Episode 47: A Dilemma of What to Do with Frozen Embryos: Nicole’s story
Episode 47 SN: A Dilemma of What to Do with Frozen Embryos: Nicole’s story
If, in your attempts to start a family, you run into trouble getting pregnant you quickly learn about a thousand elements involved in the process of getting pregnant: hCG and estrogen and the uterine lining and if you are making use of IVF technology to get pregnant, a whole other set of elements enter the equation: the quality of eggs and sperm and if you are lucky embryos, and then, again, if you are lucky, the quality of the embryo after a few days of cell division, the blastocyst…and the list goes on and on. What today’s guest contends with, which I’m guessing is a common issue for most people who use IVF, is the question of what to do with the remaining frozen embryos. The power of their potential keeps her and her husband uncertain about their appropriate fate.
You can find Nicole’s piece about this experience, Very Nice Blastocysts, here
Audio Transcript
Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m an economist and a writer and the mother of two girls.
If, in your attempts to start a family, you run into trouble getting pregnant you quickly learn about a thousand elements involved in the process of getting pregnant: hCG and estrogen and the uterine lining and if you are making use of IVF technology to get pregnant, a whole other set of elements enter the equation: the quality of eggs and sperm and if you are lucky embryos, and then, again, if you are lucky, the quality of the embryo after a few days of cell division, the blastocyst…and the list goes on and on. What today’s guest contends with, which I’m guessing is a common issue for most people who use IVF, is the question of what to do with the remaining frozen embryos. The power of their potential keeps her and her husband uncertain about their appropriate fate.
After we spoke I interviewed a reproductive endocrinologist from Yale, who also happens to have used IVF technology for her own pregnancy. Although this is a very personal decision, She has some insight into the process and the difficult question of what to do with frozen embryos.
Let’s get to this story.
P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Nicole: Yeah, I’m Nicole graves Lipson, and I live right outside of Boston in Brookline, Massachusetts.
P: Nice. Lovely. So sometimes in thinking about the families we create, it’s useful to think about the families we’ve come from. So Nicole, do you have any siblings?
N: I do I have one brother. Yeah.
P: And growing up to do you think I’m definitely having a family or I want to recreate this or
N: I always knew that I wanted to have a family and have children. I don’t think it was in a intense active way. But when I envisioned my future, family and children were always in it.
P: Okay. Let’s get to the family then. Do you have two kids?
N: I have Three,
P: three kids. Okay. Yes. So was it easy to get pregnant?
N: It was not at all easy to get pregnant. My husband and I were married for six years before we had our first child. I had assumed as I think a lot of women assume but it would once we decided to have a child that would be in a year, year and a half. or so before we would get pregnant at the most. And that did not pan out. And so we pretty quickly realized that we needed to turn to fertility treatments and assisted reproduction to help us out with our first
P: so let me ask you about that before we get into that even more. We needed help as well. And I found that kind of shocking and awkward. And you know, once you invite more people into the process of creating a baby, it’s just it’s just not what we were kind of fed growing up. Right. That’s not your image of baby making. Were you equally kind of taken aback by that or did you just you thought this is Thank God this is here.
N: I was taken aback by it. I think I think what was hard for me about it wasn’t so much that there was a stigma around it or anything like this. It was the feeling that for so many things in my life as a kind of driven, ambitious person. I’ve been able to control outcomes. If I worked hard enough, if I focused I could make a lot of the things that I wanted to happen happen. And it was hard for me to come to terms with the fact that there was nothing that my brain could do to help my husband and I create a baby.
P: Oh, totally. And we briefly talked before we started taping about uncertainty. I have the exact same mindset and I thought well, I will just work super hard to make it happen. Yeah, that’s how it works. Right? Although I have come to reflect on that idea as naive. And maybe my sense of my control over all those things was less complete than I thought it was in the moment.
N: Yeah, I think it’s really hard. To let go of that tendency.
P: Yeah,
N: I would still think about it all the time while I was going through the process, not only because there are elements of it that just make it very consuming, whether it’s yourself medications, or things like this, but I think I still had that feeling of if I put brainpower to this you know, if I think about it enough, you know, if I read enough online forums, you know if I know enough about this, if I do the process well enough meaning, you know if I give myself that injection, not at the no one at night or similar 659 But exactly at seven o’clock so I think it is really hard to give give up that control. Another that you’re doing in assisted reproduction. You are you are handing over control of this process to to medicine
P: to someone else, right. You’re giving me a flashback of our I remember myself in a room practicing the injections on an orange did you have to do that?
N: Oh, sounds actually familiar. And now that you know, you say it, I might have done that as well. A universal thing?
P: Yeah, yeah. Okay, so So you realize you need help and what does that look like and how does that go?
N: Doing some research and finding out you know, different well regarded fertility clinics here in my area that are many in the Boston area?
P: Yeah.
N: And so we were lucky in that regard, and then having a consultation with a couple people and going with the doctor who we felt comfortable with and and who we felt we would have a good shot with.
P: you Did IVF right?
N: Wasn’t that your before our first child? We did IUI. We did three rounds of uterine insemination and the third was successful. That’s it.
P: That’s what I did you and that’s pretty gentle in terms of art, right? I imagined that I’d walk in there and they’d have like a turkey baster. Which is how they’re filling you with with the materials of life.
N: Yeah. I think the hardest part of that experience for me was that on one of the inseminations there was like a good teaching hospital that I did. There were like, six residents in the room. Like one of them actually did the procedure and I was like, I’m not so sure about this. There you go again, with right like handing over control.
P: Yes and uncertainty. For sure. I’ve definitely been in the teaching hospital setting where I’ve thought I mean, I should just sell tickets. I feel like I’m getting used here. So the first one is a success and how is that pregnancy
N: that pregnancy we might end up working? We might end up going off on a tangent here at that pregnancy, with the exception of nausea. I was nauseous at the beginning of all of my pregnancies was wonderful until week. 28. I want to say when I went in for a routine ultrasound, and it was determined that my cervix was shortening which you might know means often that you’re near labor, put on immediate bedrest, so as I’m bedrest for you know, modified bed rest at home for many weeks until I got to be in my you know, 30 Something pregnant and 36 weeks pregnant or something like this and nothing had changed in my cervix and my my OB was like, this just must be your body’s physiology. And so I ended up being induced at 40 weeks after all of that. Oh, I think you’ve got you’ve talked about the rest of the show. I mean, that’s a whole other.
P: It’s useful to know it’s so widespread.
N: It’s so widespread. I mean, I wrote about this in one of my other pieces, actually, I think that the turning to that as an option. is not something that would happen if men gave birth. I was the head of the English department at my school and I, one day I was the head of the department the next day, I was on my couch and you know, like
P; crazy.
N: Yeah, there’s a lot there. Like the assumption is is that somebody else is managing the finances somebody else is able to provide if there’s other children, you know, it’s yeah, there’s a lot a lot.
P: that’s crazy. So you bed rest for a while and then how’s the delivery?
N: That was all great. I agreed.
P: Okay, good. So then how long between the first and the second? So I started to try to get pregnant again. I’m born with a second child like two years apart. That was our ideal. So I started to try to get pregnant in probably when my my first child was like 18 months or so. And, you know, I think we tried naturally for a while and but we didn’t want that to go on too long. And then we sort of marched through the different levels of intervention, right? So first, we did Clomid, and then we did IUI and eventually our fertility doctors suggested it was probably time to move on to IVF for this one. So that is what we did. Yeah.
P: and IVF is an entire project as I understand it.
N: Yeah, at the beginning, it’s quite like IUI what you went through where you are injecting yourself with a follicle stimulating hormone over a series of weeks and then so you have to go into the clinic for regular ultrasounds to measure the size of the follicles, the egg follicles and how they’re growing and get regular blood tests to measure your estradiol levels. And so it is involved in the sense that you are making regular visits to your clinic or hospital for these interventions.
And then it’s just obviously a lot of mental, a lot of mental energy. A lot is hinging during those weeks on, you know, the the call you get from the nurse at the clinic in the afternoon telling you how the follicles are growing or how many there are. I think the thing about the IVF process or or or really any intervention, fertility intervention I think is how it takes up so much space in your brain when you are going through it. I think that’s, to me that was harder than the actual injection of the shots or, or all of this it was how the sort of fixation on how things were going, how things were going to turn out sort of eclipsed the other things going on in my life at that time. That was hard.
P: Well, you are given a window into how intricate and complicated this process actually is. Because if you don’t get pregnant just by having sex one night then then that process is broken down into 45 separate steps where now you have all these other things to focus on and will the cells divide and what will they look like and you are being forced to examine and focus on all these details that you otherwise took for granted? What does not agree it seems understandable if that’s how it would go I remember waiting for the call. And when I was waiting for the call, I guess it was on like the edge of cell phones. So not everyone had a cell phone so you had to be home.
N: Right?
P: impossible to imagine. Now I can totally relate to how hard each and every step is, especially as we talked about with your interest in controlling things that you’ve previously controlled in. Your life and now it’s in someone else’s hands and I’m not sure about you, but I felt really responsible for all my numbers. Like all these numbers are being produced by my body even though I can’t do anything to change the FSH control
N: that really resonates with me what you just said and I think there’s so much about fertility and childbirth and motherhood, especially early motherhood. For me there were so many things about it that made me feel for the first time that my body’s involuntary functionings were reflection of one moral character in some way like you know whether or not you can produce a baby easily whether or not you can breastfeed, right? No woman has any choice over whether or not breastfeeding comes easily for her or not. And yet in our culture, there seems to be such like a value just to health value placed on breastfeeding your infant but almost a moral value right and so it becomes this like morally laden thing. Can my breast produce breast milk for my child can I can I create a wonderful latch you know, between my child and me, these involuntary functionings that we don’t think about otherwise suddenly carry this moral ethical weight.
P; yeah, those feelings are totally familiar, but it sounds like in this case the IVF works.
N: the IVF works. Yes. And the first the first round of IVF work so we were very lucky in that regard. Yeah.
P: And then the leash gets longer after the first trimester because now you’re freed from the fertility people.
N: Yeah, absolutely freed from the fertility people. And just regular pregnant woman at this point. Yeah.
P: how does that pregnancy go.
N: Hey, I really loved being pregnant. I loved being pregnant. All three times that I eventually ended up pregnant.
P: I’m glad that went smoothly. I read a piece that you wrote. It’s called
N: very nice blastocyst,
P: a very nice, very nice blastocyst. Is that with reference to the third pregnancy? Or where’s that in the lineup?
N: That’s reference to the second pregnancy.
P: Okay. So let’s talk about that because that was a beautiful piece that you wrote, In case and in it, you’re sort of contemplating what to do with the other embryos, right?
N: Right. So what happened in that IVF cycle?
P: To give a little background on a typical IVF cycle, I got in touch with a reproductive endocrinologist today, we are lucky enough to have Dr. Tanya Glenn a reproductive endocrinologist from Yale on you have a clinical practice and you’re an instructor at Yale as well. Is that right?
Dr. Glenn: clinical instructor The third year fellow, so I’m still in training, and we’ll be graduating in about four months.
P: Oh, exciting. Congratulations. Thank you. Thanks so much for coming on the show. Can you give us a quick walk through what the process is? Just so people who have you know exactly what’s happening
Dr. Glenn: so to IVF is when patients will take their medication determines what that means is there are natural hormones where your brain tells your ovaries each month and a patient that’s having regular monthly cycles to grow an egg, and usually our bodies when they can, okay. And in this case, we take over that brain to ovary signal by giving them hormones that they take through an injection. And this instead of just saying grow one egg, I’m telling the body girl lots of eggs. And then when they get enough large eggs, we call them follicles at that point because eggs are microscopic so I can’t see eggs themselves by say I see the home that they live in. And as the egg gets more mature, the home gets bigger. And so once that follicle gets to a certain size, we give them what we call a trigger shot. This kind of mimics our body’s natural hormone rush that causes the body to ovulate or release the egg then approximately 36 hours later, we do a procedure called an egg retrieval that includes a transvaginal ultrasound with a little needle in the end, or we actually go into the ovary and suck out the follicles or the eggs under ultrasound guidance. We would then give those eggs to the embryology lab. And let’s say someone is has a male partner or using donor sperm. And in that case, we would expose the eggs to the sperm. And then you know, watch them fertilize in the lab and then usually grow them to day five, sometimes day three if they’re lesser quality. At that point at day five, they’re called a blastocyst and a blastocyst can either be transferred back to a patient she desires to get pregnant in that cycle, or we freeze everything? And especially with patients who have let’s say a couple like they don’t just have one embryo they have five or six that say they want one place back but now with these other five, they’re going to freeze them. It’s called process called vitrification, which is Latin for making glass and they can transfer them in another cycle. And the purpose of that too, is that we know even for patients with you know less than 35 so peak fertility is actually in the mid 20s. But we can really see it go down at 35. And so even patients younger than 35, we only see about a 55% chance for live birth each time that you place an embryo back, so it’s not 100%. So it’s nice to have those I say something reserved in the bank. And so we know that the live birth rate after about three embryo transfers one each time is about 90%
N: I think I had 14 eggs that were extracted at the end of that cycle, maybe five or six fertilized normally and the doctors picked the very best two and this is interesting. I learned that embryos are graded like diamonds, it’s a similar grading system that diamonds have like clarity color. There’s a very similar grading system for embryos and so I from us process we had two beautiful sparkling high quality diamond embryos and so two of those were been implanted in my uterus and and that’s determined based on your your age and an algorithm you know, how old are you? How likely are you to have multiple babies? I would have welcomed twins if that had happened but it did not only one of the embryos implanted and that embryo turned into my son, who is now eight.
P: That’s sort of amazing and you’re talking about feeling judged based on what your body does and but you’re literally your eggs are being judged. They’re like,
N: Oh, I’m proud of my diamond embryos. Like it’s like my husband and I produce these diamonds. Absolutely. Like you’re sitting there I remember sitting on the on the hospital table with like the paper sheet over me being shown this photograph of the two embryos and Doctor explaining to me what made them so perfect. And you know, I was just I had, like my first glimmer of maternal pride in these little creatures that might become a child of mine. So, yes, and and then what they do is they they continue to let the remaining embryos that are in that petri dish, their cells continue to multiply and they watch them and the ones that continue to live on which means that they are in the strongest condition have the best hope of you know ever developing further they freeze and so after our IVF cycle, we had three frozen embryos left over should we ever want to use.
P: So that becomes a little bit of a tricky question, right? What do you do with the embryos which I feels like it’s weighty?
N: Yeah, so that’s the question that I explore in my essay, very nice blastocyst. Anyone who has had a child knows how all consuming it is to have an infant. And so you know, for for the first few months to a year of my son’s life. I’m breastfeeding I you know, I have his older sister at that point is a toddler age three. And so I’m a busy lady, with a lot going on, and not something I ever really thought about, you know, the embryos at that point. They were, you know, the IVF wasn’t that far behind us. You know, there wasn’t any question because my baby was so young that I was going to have another child anytime soon. Nor did my husband and I know if we wanted to have another child that was not something that we had planned for or discussed. We very much knew that. We wanted two children and not one we were very hopeful that we could have a second child after our first but beyond that, and never more children had never been a big factor in our thinking our planning we’d never gotten further mentally than into
P: Yeah, and I can see because I also did not get pregnant easily. I know the drive and the focus, to make the babies and have it work. And that kind of overrides everything. So you don’t necessarily think about what’s going to happen to those embryos. You know, you’re so excited that you get pregnant when you’re when you get the call and you are pregnant and it’s going to work and you’re so focused on that. And so seemed like in your essay, you were saying that issue of these frozen embryos occupied a space in the back of your mind pretty continuously and sort of what to do with them.
N: Right. So again, the saying earlier, the fixation on successful that getting a baby is so strong and so overwhelming. That I think it it pushes your brain away or pushed my brain away. I can say from thinking about other things, anything tangential and a future fallout from this experience. I wasn’t thinking about oh you know, is this going to be harmful to my ovaries in the long run to be stimulating them this way? Because I didn’t care. I just wanted this baby. You know, I didn’t care if you know there was heightened risk for ovarian cancer. I wanted this baby.
P: people who use assisted system in production are pretty focused on getting pregnant. History really do we know if there are any long term consequences?
Dr Glenn: That’s a great question. I think that overall there has been some information looking at specific or mentally responsive cancers like breast cancer and IVF and one paper I know that I reviewed recently looked at maybe if there is a slight increase it was a Danish conference study that there might be a slight increased risk of breast cancer within the short amount of follow up time. However, when you looked at the risk, it was point 9% of the population versus 1.1% of the population. If there wasn’t a difference. It was incremental. I always have a caveat as well as that this is looking at a very homogenous population. It was a Danish cohort, how much does it apply to our own patients? And so there has been a certain studies looking at that if you look at something like egg donors, you know, we limit it to six cycles and so and it was actually not for the potential for increased risk for cancer, because looking at the increase of cumulative risk of doing something like stimulating your ovaries and going for an egg retrieval. So overall, it’s a risk for any kind of complications from an egg retrieval day. infection, bleeding damage to certain structures like your bowel and bladder is like less than point 1%. However, when you look at someone doing repetitive cycles over time that increases and so we just want to make sure we protect everyone. But overall it is it is a safe procedure. They take the each individual and say what are their risks and benefits knowing their history?
N: The same way did I know that there was a likelihood that my IVF cycle would result in frozen embryos? Yes, my husband and I were given among all the many piles of paperwork you have to sign when you when you do IVF there’s a form we had to sign even before embarking on IVF about storing frozen embryos because the clinic would store those in their own facility for up to three years. But beyond that, if you didn’t want them to be destroyed at that point, they would need to transfer them to an outside cryogenic facility. So all of this required paper work in advance and the clue to the fact that I just wasn’t giving them this topic. The brainspace that I probably should have before I embarked on IVF is that those papers I found those papers unsigned and unreturned after the IVF cycles, so there was something about those papers. You know, I remember reading them and thinking this is crazy. How can I be signing papers about genetic material that doesn’t exist that might not ever exist? Decisions for possible future genetic material and where I’m going to store it and it just seemed, it’s it was daunting paperwork and there was something almost like speculative about it. It just it was I didn’t want to look at it. I didn’t want to face it. I didn’t want to think about it. And I didn’t.
P: Yeah, I mean, it almost seems overconfident to be like, where are you going to stash this haul? Like I don’t have anything yet. Right?
N: Exactly. Like are you kidding me? I just want to have a baby. I don’t want to think about this doesn’t this doesn’t relate to me. And so obviously wasn’t a deliberate omission not to sign the papers, but I did find them unsigned later in my folder of IVF records.
P: So one thing I wondered when I read your essay, because I don’t think you mentioned it to have this issue weigh on you. Do you have to think that those embryos are a life is that what is holding you up because I I’m not sure if I think of them as a life or not in the context of the abortion debate. Which is so polarizing and kind of flattens the arguments that can be made. I would say this is not a life… solely my opinion, and because I had so much trouble getting pregnant and with the pregnancies, the intricacy of all the things that have to happen. To turn that tiny ball of cells into a person gives me distance from them.
N: Yeah, but I wonder what your feelings are about all that. I mean, maybe I’ll talk about the essay to get it that what was so interesting to me about going through this process, I’ll backtrack and I’ll just explain the predicament. I found myself. So after our son, you know was when he’s around two or so, you know, my husband and I did start to discuss are we done having babies, you know, do we want to have another baby and we weren’t sure. But the fact that we had these embryos felt like a strong nudge towards having another child I felt if we were on the fence for various reasons that it was that factor that tipped me over into wanting a third child. So we actually disagree with it.
P: Let me stop you there. For a second is it that you went through this difficult procedure to get the embryos and so and so you should use them or it’s that these embryos represent a life and we should realize its potential?
N: So little bit something in the in the middle, I think,
P: Okay,
N: I think if we were just deciding whether to have a third child without factors, the embryos being involved, it would be a decision that had no if we decided not to have a third child. That decision would have no impact on anyone whatsoever. Only us right. But the fact that there were these embryos suddenly meant that that decision carried a lot more weight than it otherwise would have. We would actively have to do something not to have a third child. We would actively have to make the decision to destroy these embryos to not use them. Right and I do not think that embryos are life. Do think of them and this is where as a mother the issue became complicated for me. Our potential
P: Yeah, agreed
N: they are read intial life. And so there is something very hard about letting go of potential. And I think especially if you’re a parent trained, you know to to love potential to look for potential to want to nurture potential. And so that was the meaning that these embryos started to take on for me and since we were on the fence about having a third child, I said I’ve got that nudged us towards yes having one. But then something happened to make things complicated, which is that once they got the process, going reconnected with our clinic, made an appointment for a baseline ultrasound, which is when they look at a do an ultrasound of your uterus to just see where it stands and what would need to be on what hormones would need to I would need to take to prepare the lining of my uterus for the implantation of one of those embryos. once we’ve made all of those moves I got pregnant naturally.
P: of course you did…that’s how it works
N: which itself was a very wild experience after having worked very, very, very, very hard for my other two pregnancies to simply have a late period, have that moment of wondering, going buy the CVS and now on my way home from work, pee on the stick and be pregnant was like, writing my essay that it was as if all of a sudden somebody told me that my fingers could spin gold like that my body could do this was totally shocking and disorienting and wonderful.
P: especially when you see behind the curtain right now you understand the thing. Everything is amazing.
N: Absolutely. So that was wonderful and and that pregnancy went well and resulted in our in our daughter, but it did leave us then with this again, but the question of these embryos,
P: but I’m imagining it’s a slightly different question. Now that you have three kids right. Then you have to take into consideration the other three, right it’s
N: it was a pretty much out of the question. We were not going to have a fourth child for for many reasons. It’s just not feasible for our family. It was not something that we thought would be best for our family and so that left us with these embryos. And what my essay explores is sort of my shifting orientation to these embryos over the years because the truth is, I could not bring myself to make the call to our clinic to have them destroyed. And so their existence is something that I ignored that I I sort of willfully ignored for a long time. And you know, there would be moments when you know, I would think to myself, I can’t believe that I call myself a full grown adult when I am not taking responsibility for these embryos and making the choice to to have them destroy because I’m a writer, but it’s not hard to imagine like some of the like Apocalypse apocalyptic visions of like embryos out there in the world. And basically, I’d ceded all responsibility for our genetic material or potential, our potential but this potential that we’re responsible for to total strangers in a lab somewhere a couple miles from our house, but it’s a because it is so hidden and because these embryos are frozen in the they are unseen, right is what it is. They’re not a reality that you need to confront every day, right? You need to confront the reality of your children every day. You know, you need to prepare the meals you need to deal with whatever struggles and hardships come their way you need to attend to them but the embryos it’s very easy not to and truthfully way that I’ve since learned because I don’t know a whole lot about this at all, but the way that fertility clinics, deal with them. Also makes them sort of quite easy to ignore, because clinics are not particularly this. I shouldn’t speak for all clinics. I can speak for ours but my understanding is that this is pretty universal. They are not aggressive about getting their patients to make decisions about what to do with the embryos. I knew that that they were still at our original clinic I had never signed any papers authorizing them to be transferred anywhere. I you know, did wonder on occasion if they had been destroyed without my knowledge since they had been there longer than the three years. I did, you know, one day email our clinic because you know, and I write this and they they essay it wasn’t because I had some sort of resolve or I had come up with some sort of decision about them but I just I wanted to know if they were still actually around. Or if they had been destroyed. You know, there was a very lovely receptionist on the phone in the lab who basically was like, oh, no, they’re here if you want to transfer them. You just have to sign this paperwork.
And there was nothing urgent about it, you know, whatsoever. And so it’s one of those like decisions that indecision that ends up happening because there’s no particular moment where anyone is putting a paper in front of you saying like this has to get done or else my relationship with these embryos began to take on almost strange, magical tenor and what I mean by that is no at first I sort of thought of them as a as Life rafts. I’m going to knock wood as I say this, but like God forbid should anything ever happen to our children there. There would be despair, there would be anguish, but there would be these embryos right so we could rebuild a biological family if tragedy befell ours. And then that over the years began to dissipate a little because you know my husband and I are getting older and as we got further and further from the baby stage, my my my youngest is now six returning to the baby stage seems it almost is harder and harder. Right? Like we are
P: totally understand what you’re saying by this kind of insurance policy. At the same time, my guess is I don’t know whether you’d be able to bridge that loss.
N: Yeah. t’s magical thinking and then it became more magical because it sort of more from like, well, these are sort of like an insurance policy to almost like superstition. If I destroy these embryos, something terrible is going to happen to my family. So there’s all of this kind of magical thinking bound up in them. You know, it’s just such an interesting juxtaposition when you think about like the rigid science that actually that actually created these embryos and then the the meanings that they that they take on and you know, during the IVF process, you know, as I said, I was fixated on the process resulting in a baby but the sort of thinking that I can do about these embryos now without that kind of urgent desire mixed in is I think about generations that came before my husband and me and our families. I think about all of the history in in that DNA, right? I think about I’ve read about in the essay, you know, my ancestors who my ancestors on my father’s side who escaped pogroms in Eastern Europe and you know, went through all sorts of turmoil to make it to the United States, right, and then lived in tenements Lower East Side and, you know, thinking about my grandmother and all of the fate and escapes that needed to take place for those embryos that are frozen to exist. And so all of these sort of meanings started to accrue and attach themselves to these embryos over the years. In a way that I never ever could have seen.
P: Once you start thinking about it as a family line, then there’s no way to extricate yourself from those from those embryos, right? You really only have like four choices, have them yourself, which you’re not going to do destroy them. Give them the science for experimentation, or give them to someone else to have that baby giving the embryos to someone else as a form of adoption. I interviewed a woman I think in episode five or six, who did just that she and her husband went through IVF had twins and decided they didn’t want to have more children. And they found families who wanted kids but for whom IVF was prohibitively expensive, and they donated them.
N: I mean, I think that that is incredible. I admire this woman.
P: Yeah, totally.
N: I understand. I see the beauty in that. Gesture. I myself personally could not do that. It would feel and this is where that word line the web in life and non life comes in. it would feel to me like giving away my living children in a way to be raised by total strangers. Obviously not quite so extreme. I have a relationship with my living children, but not so far from the same.
P: Yeah,
N: I don’t know what kind of parents these people would be. I don’t know what kind of circumstances you know, they would would put my child and so that didn’t feel comfortable to me. The science research part didn’t feel comfortable because you know, I think I read in my case like science for whose purpose you know, you don’t have any say in what we’re what purpose is, are. Are these embryos being used. And so that vagueness was a discomfort to me. And so I can’t say that I was or am proud of my feelings about these things.
P: Well, they, they just are right, they just
N: they just are. I often wish you know that I could think of these embryos. As you know, like biopsy tissue or something right, like disposable, you know, useful for scientific purposes. And I think there are people who who can who do think of them way
P: this is obviously a really fraught issue and that I brought to Dr. Glenn so Nicole and her partner can’t be alone in this quandary about what to do with frozen embryos. Does your clinic offer counseling or what do we tell people?
Dr. Glenn: You know, I don’t think specific kills like that for our clinics for this topic, but it’s something that I talk to patients about during their IVF and then before they sign it is like, you know, these are the different parts you need me to discuss or you know, you alone, you determine that. And so they have questions, of course, as part of the conversation about like, next step. So when you do it, to be honest, we have less patients that kind of go forward on this part. And I think, kind of like you said, the initial part is I just want to know what to do next, and I just need to keep going. I think that most patients don’t think about that until later on
And unfortunately, I think that this is a personal struggle that they sometimes don’t reach out for, they don’t look at as your decision is such a personal decision. So they talk to their friends, family. Or they talk to other people who have gone through IVF
I went through IVF twice and so that’s also something that you know, you look at it you’re like cheese Wow, this is intense, because not only putting something that you feel is yours and special in this kind of box of three check box do and destroy. Do you want to donate to another person? Or do you want to donate research? And it’s weird to like go from something is very personal just to these three checkbox. And it’s also very finite on your life. It’s like what if something happens to you? What if something happens to your partner, if you have a partner, it’s a struggle for some of our patients to that they decide not to freeze embryos, they actually freeze eggs and sperm separately and then only inseminate one or two at a time. And so in other countries, it’s also illegal to freeze embryos. So in Italy can’t do embryo freezing you can only do egg and sperm.
N: Potential, you know, that always trips me up the potential that is bound up in them. So I you know, I’ve been thinking a lot and I tried to explore this in the essay about what it means to mother, right? What does it mean to when you think of mothering a child, as I mentioned before, it’s so much of what we love, right? Or what you think about is like nurturing potential growing potential. But what I started to think about as well is how much of mothering how much of parenthood is also about letting go and about seeing your children’s limits? At times and coming to accept you know, what isn’t going to be right like a child is born and it seems like they’re this blank slate and the sky’s the limit and they can be anything and do anything and they think anyone who you know has children in any you know, element for a preschool or elementary school age seems like, you know, there are things that that you need to let go of as a parent and things that your child will not ever be and maybe that’s not disappointing to you, but it’s disappointing to them or maybe in some way it is disappointing to you, but letting go and accepting what isn’t going to be or what shouldn’t be, I think is also a big part of parenting of mothering. So that is ultimately you know, what is what has helped me move forward in my embryo journey.
P: So would you say you’re at the end of the embryo journey are we’re still they’re still in limbo.
N: It’s still in limbo. I’m still in limbo. But I know the answer. I do know that. The answer is that I have to destroy these embryos, but I haven’t done it.
P: I mean, I don’t know if it gives you any comfort to imagine that no matter what you do, there’ll be regret. Because there’s no perfect answer here. Right. But while you’re talking, I’m thinking, why would I would probably donate them to science and then I can literally feel the regret of making that choice. And I don’t have any eggs and I haven’t made that choice. But there’s nothing here except having all the children which is not going to happen right for for almost everyone who goes through IVF that is not what the goal is to have all these have all these children and it’s a little bit of a mismatch between what interventional fertility can do and what our lives look like.
And so maybe there’s some point in the future where they can better estimate which eggs will survive and which eggs will produce and they’ll take fewer and they’ll make fewer embryos and then we won’t have this dilemma because you won’t, I mean, you’re not going to be sad about an egg because you’re shedding eggs every month, right? So that’s a thing. Right? But right now we’re in this mismatch where we can’t I mean, it’s a little bit like everyone who goes through IVF The doctor has to choose how many embryos to put in there within your uterus, which is a wild decision that nature doesn’t force you to make in that way, right? You don’t have access to five embryos.
N: Right. Yeah. It is. I think it is a really interesting question because, you know, that I thought about while writing this pieces, would it have made a difference if my fertility doctor had said to me right now is the point in the journey when we’re going to talk about planning for frozen embryos? And yeah, you know, and thinking about that and I want you to be fully aware, you know, that this is a quandary that many parents face afterwards. And I don’t know maybe that would have led me to ask more questions about how many follicles that we’re trying to harvest. I’m not sure, but I don’t know, things might have changed, and maybe those conversations are part of the process now, but they weren’t when I was going through IVF. So it was sort of an unspoken aspect of the of the process.
P: I mean, I think IVF sheds some light on how little we know about many of the intricacies of this process. Even if you do IVF as you know, you don’t get pregnant every time.
N: Right. Oh, and totally and also you’re not so at the mercy of the knowledge of these doctors, right? Like, are you say that I expect if I have, you know, 13 follicles great like, let’s do it, like, produce 13 follicles.
P: I asked Dr. Glenn. She can imagine a future in which we can grade egg and sperm so well that we know exactly what we need to use to get an embryo that will successfully lead to pregnancy.
Dr. Glenn: The problem is the attrition rate. I talked to this when patients are freezing eggs for future use. Is like well, how many eggs do I need and someone that triggered over 80% live birth rate of less than 35 year old would need to freeze 16 eggs? Not every egg survives a freeze thaw process not every egg gets fertilized. Not every fertilized egg makes it to day five. So freezing embryos is a better guarantee that you get embryos out of it.
P: Do you think there’s a time in the future where we will be able to identify markers on the egg to know which ones will freeze and which ones won’t? Or which ones will fertilize
Dr. Glenn: future? Who knows right? I’m always impressed about what when I’m an embryology Lab. I’m always impressed but they can do. They also can look at a little bit if they’re doing a procedure called ICSI which is intracytoplasmic sperm injection. If there’s a problem with male factor or problem with the sperm, then they actually can take us in each individual sperm and injected into the egg. When they do that. They have to kind of clean up the egg a little bit. When they clean up the egg. They do get an idea of how good the egg looks and so they kind of grade them that way in our lab, but I’m sure in the future they’ll be able to look at the egg and kind of determine better about potential for how many fertilized and quality and those are our struggles right now is that we have a very limited view of quality you know, we can kind of determine quantity of how many is called ovarian reserve or how many eggs a woman has left that we have very limited achievement of is quality. likely they are to get pregnant with a successful healthy baby. And so there’s so much unknown out there. But it’s also hard because this is an ethical quandary about working with someone’s eggs, sperm or embryo
P: and there’s no way before you make that decision to know whether it would have been viable like thought and let it grow a couple more days and see
Dr. Glenn: so a couple more days wouldn’t help or even Nestle work because the lab can only grow embryos to certain points of time and you don’t know until you put an embryo back whether or not it’s going to be good or not personal experience when I did my IVF cycle a few years ago after embryos get to day five, the embryologist looks under the microscope and grades them on how good they look very specific criteria about what’s called Hope Spanner they are embryos actually have a little protein shell kind of like an egg and they hatch out. So they look at that how thin it is how it doesn’t look like it’s going to hatch out and attach to a uterus. Then they look at two things that trophectoderm in the inner cell mass the trophectoderm comes the placenta and the inner cell mass becomes the embryo. They grade them and how good they look. And again there’s very strict criteria.
I had almost perfect looking at embryo with fabulous. I had a negative pregnancy test
P: wow so that just means it didn’t attach or do you know what that means? There’s like they
Dr. Glenn: just did not attach or if it it tells you it was not good of quality. And there’s other things besides the embryo there’s a signals between the embryo and the uterus. Is a uterus being receptive at that time. Did it not you know get to that point. The and the uterus called Pina bogs and attached appropriately with the cytokines and the protein than amino acids just a little bit imbalanced that day. There’s so much we don’t know about implantation, but the embryo is not the only thing that’s important.
N: You know, I don’t know if I would have had the perspective to ask the questions that might have prevented this quandary that I’m now in.
P: I dont know this for sure but I can well imagine that there’s some evolutionary pressure they’re forcing you to focus on reproduction as you know, up to the absence of anything else right because that’s kind of what you’re
N: I like that idea. take some pressure off. Yeah, I really like what you said earlier, though, about I don’t remember exactly how you put it but how, no matter what decision, you know, make or I make in this like there’s going to be regret. And I think that that’s also something it’s just a process of coming to terms with right that oh, there’s going to be some answer that makes everything okay.
P: Who is hashing out these ethical issues is there there are medical ethicists who are working on it or? Well, there’s
Dr. Glenn: a lot of people that are not only just PhDs, but also there’s like an ethical committee on the American Society of Reproductive Medicine. We have ethical committee guidelines that discuss all these things. And usually you don’t want to just doctors on this panel. You want a lot of other great minds in there too. So there is definitely a lot of research people that you know, do their PhD in ethics. And so I would actually kind of go back to those ASRM community opinions and guidelines for ethics just as we continue to struggle with different topics as we learn more as we’re able to do more you know, when you look at the beginning part of IVF and the you know, late 80s, the chances of success disciple was like 2% and they couldn’t freeze extra extra embryos. They had no capability of doing it yet. And so as we get better at doing things, more ethics come up
N: there’s going to be something that happens in the future. That just makes it really, really clear that now is the time when I need to say goodbye to the embryos and I’m still sort of magically waiting for that. I know that I wanted to let go of these embryos but why today on Wednesday at 156 day now, and you know, and perhaps there will be some moments when crystal clear to me in some way that this is the moment when it just poetically makes sense, you know? So that’s I think, just part of trying to tamp down the regret.
P: Yes, yeah. Who wouldn’t search for clarity. That’s totally makes sense. I so appreciate you coming and talking about this because there’s not that many conversations about this and everyone who goes through IVF must have some version of this quandary…especially if you go through IVF and it is successful, then the potential of those embryos feels exceedingly real.
N: That’s exactly right. Yeah. Yeah. I think watching my son grow also was part of this difficulty in letting go of the embryos. These embryos were formed, you know, at the same time that he was formed, is so tangible to me. He is a particular person is a boy who loves breakdancing and Brawl, parsley, basketball, and his dog, you know, and he has his very particular room and his likes and dislikes and so not so hard to extrapolate from there right these other these other embryos but I I do want to be very clear also just because the abortion debate right now is so front center in our country that I think that our choices my husband’s and my choice, but he’s very much prefer to me my feelings are much bigger than his around this. And so it’s our choice, but it really it really is my choice just because of how his feelings lie. But my choice about what to do with these embryos feels very important to me the fact that I have the freedom to decide what to do with these embryos and that I know, given our family circumstances, given my husband’s and my age, whats right for them, and that to me feels like a part of mothering that feels like nobody terminates life. Nobody destroys frozen embryos because it’s easy, but because that is what they know to be to be right for them and for their life and, and for the life of the embryo or unborn fetus. So that’s just I don’t know if we want to go into all that but I do think since we’re talking about like this sort of like middle place where embryo scan between life and non life, you know, that’s sort of my my thinking on that and all there is right to deal with this like, as you say like coming to terms with the unsettlement of things such a big decision, but I’d still think that it’s a decision women should be able to make
P: I totally regret that the abortion debate is so political and so polarized, because it’s kind of a nuanced question, and it is, I think, if really want to talk about the science or what’s at stake. No, that gets into the conversation. It’s treated as is very black and white thing, which clearly it’s not, you’re in this middle space where it’s not in your body, and so even a little bit more leverage over it. But
N: I like to offer myself up as an example of someone who does not see an embryo as being as disposable as biopsy tissue, and does see the sort of weight of an embryos potential and yet I absolutely believe with my whole heart that a woman should have the choice of what to do with that embryo.
P: I totally agree. I just think like the abortion debate, debate forces women to say not life period at the end, while it is not a life it is something it is potential it is it is something that is important and valued, it is tricky. So maybe there will be more discussion around this topic if the abortion debate wasn’t hanging over it.
N: Totally. Well, I do think so many of our like public conversations force us into black and white thinking sort of like that polarized one side or or the other, but embryos really do occupy this very mental state, which is which makes them really interesting to think about. Yeah,
P: I totally agree. Well, Nicole, thanks so much for coming on and sharing your story. And I will definitely attach her essay to the show notes because it is beautifully as a writer totally blown away. And probably you do this too. When you read other people’s writings. There’s certain phrases where I think oh, so beautiful and Nicola has thought of it and now I can’t use it.
N: That is such a compliment. Thank you so much for your kind words and for reading the essay and for having me on your show.
P: thanks again to Nicole for sharing her story and her struggle about what to do with her frozen embryos…as Dr. Glenn suggested, ethics is working hard to keep pace with science, and until they are fully aligned it seems we each have to figure out how to manage this situation. To be clear I completely support a woman’s right to manage her own fertility, whether that involves a pregnancy or an embryo–but having that right doesn’t make the actual decision easier. I wish NIcole and her family luck and comfort in the decisions that she will make on her own horizon…and thanks to Dr. Glenn for sharing a little bit of her experience and her expertise about the complicated and fascinating process of IVF.
I will put a link to Nicole’s writing in the show notes, which can be found on war stories from the womb. Com…
Thank you for listening…if you liked the show, feel free to subscribe and share it with friends.
We’ll be back soon with another inspiring story
Episode 5 SN: Dreams Come True X2: Danielle
Teenage girls are repeatedly told that pregnancy could fall on them at any moment. Caution is the watchword. But often when those young women grow up, pregnancy is nowhere to be found. That was the experience of today’s guest. When she and her partner set out to start a family, month after month, the pregnancy tests were negative. After some fertility testing the doctors believed that they had nailed down the issue, and almost as soon as it was discovered, my guest got pregnant, and her son was born 9 months later. When her newborn was 6 months old they set out to have another child, only to be stymied again. They undertook the challenging and expensive processes of IVF–which did not end in a pregnancy. Once she had emotionally accepted that she would not have another child, she got pregnant again. She and her partner then went on to help another couple realize their dream of starting a family in a way that could only be written by the fates. Listen to her inspiring story.
Sperm count
Brief description of IVF
https://www.pennmedicine.org/updates/blogs/fertility-blog/2020/april/how-does-the-ivf-process-work
Cost of IVF
Gentamicin and deafness in children
https://advances.sciencemag.org/content/5/7/eaaw1836
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938424/
Connexix 26 and hearing loss
https://www.californiaearinstitute.com/ear-disorders-connexin-26-bay-area.php
https://www.cdc.gov/ncbddd/hearingloss/freematerials/parentsguide508.pdf
How common is IVF/embryo adoption
https://www.cdc.gov/art/artdata/index.html
https://www.cdc.gov/art/state-specific-surveillance/index.html
https://opa.hhs.gov/sites/default/files/2020-10/opa-embryo-adoption-awareness-program-50th-2020.pdf
Dr. Michelle Hu, Facebook page
https://www.facebook.com/mamahuhears
Audio Transcipt:
P: Hi welcome to war stories from the womb. I’m your host Paulette Kamenecka. Teenage girls are repeatedly told that pregnancy can fall on them at any moment. Caution is the watchword but often when those young women grow up, pregnancy is nowhere to be found
This was the experience of today’s guest. When she and her partner set out to start a family month after month, the pregnancy tests were negative. More than a year went by without success
They did what many people in this circumstance do: they looked for medical help with infertility. But this is where their story strays from expectation. Their path to pregnancy was a in no way typical, highlighting the limits of our knowledge about fertility and it ultimately gave them a new perspective on what it means to be a family
After our conversation, I went back into the interview and included information about some of the medical issues we discussed. I also interviewed an audiologist to learn about hearing loss and the latest Technologies in that field.
Let’s get to the interview
Hi welcome to the show. Can you tell us your name and where you’re from?
D: Yup, my name is Danielle and I am from Kalamazoo Michigan
P: Nice, and Danielle, how many kids do you have?
D: I have two kids, book boys ages, 6 and 3.
P: so young….before you got pregnant what did you think pregnancy would be like?
D: I thought it’d be really easy to get pregnant my older sister got pregnant very easily, very young, as did my mother.
So I assumed that as soon as my husband and I were ready to get pregnant it would happen basically overnight when we wanted it to happen and so I just assumed when we already it would happen.
P: Did you think pregnancy would be easy? Did you have an idea of what that process will be like?
D: Yeah, I’ve heard stories about being really easy for some people, being really hard for others I pictured that maybe I would kind of fall somewhere in between. I felt like I was in pretty decent shape; that if I kept working out that it would be fine for me but you know my mom had some twins that were born very early so I knew that there was a likelihood that I might have some issues but I didn’t really know what to expect to be honest.
P: Yeah, was it easy to get pregnant that first time?
D: It wasn’t. It wasn’t easy at all. It took us quite a while to get pregnant.
P: How long did you…like how long was the process and did you end up turning to doctor’s to be involved? Or, how did that go?
D: Yeah, so we got married in May of 2011 and we started trying almost immediately and basically determined pretty quickly that it wasn’t going to happen overnight. We started determining that we were going to have to have somebody help us you know obviously fertility clinic. We reached out to…almost… I think it was like in the fall that year. We always assume that you wait 6 months you try if that doesn’t work and there might be something else going on so we went to an open house that they had one evening and sat down kind of learned, you know, what are some of the causes you know what it could be and we got a free consultation with them and really go into what could be causing it and really found out what our next steps would be which included a lot of testing.
P: Yeah, the testing is not…not as fun as you might think it would be.
D: No yeah I mean it wasn’t just myself that went through it, it was my husband. So lots of pokes and prodded and lots of tests and x-rays blood work you know a lot of uncomfortable tests, very non discrete tests, you know, invasive
P: totally
D: But a lot of necessary tests to really dive into the nitty-gritty about what’s going on. My husband is 8 years older, so they thought maybe something to do with age. I was younger so there really wasn’t a lot of concern as to what was causing issues and it took them quite a while to figure it out. They thought it could be related to a hernia my husband had so he ended up having hernia surgery. It didn’t really help anything. They put us on medications. They did, you know, different procedures. I mean there were so many trial and error that they tried before they really determine what the cause was.
P: So it sounds like they figured out what the cause was.
D: It was yeah they determined that my spouse had a very low sperm count and basically was disappearing before their eyes and they didn’t really know why. They said it could have been caused from injury from when he was younger he was really active in sports so it could have been one, you know, injury to the groin that maybe he didn’t even know could have had the impact they had on him today… but a normal person has a 20,000 every time they ejaculate and he was like 1400 so very very low.
P: Oh wow
it sounds like Danielle’s partner had a semen analysis and his sperm count came back low. To give some context to the numbers according to the Mayo Clinic normal sperm densities range from 15 million to greater than 200 million sperm per millimeter of semen. You are considered to have a low sperm count if you have less than 15 million sperm per milliliter, or less than 39 million sperm per total ejaculate.
D: and so basically their course of action was to freeze some right away to try to retain as much as they could before they were gone.
P: Yeah, yeah that’s a little scary.
D: Yeah
P: How did he take that? Was he ok or it was upsetting or…
D: No he was devastated because they called me to tell the news because I was basically the contact I had to deliver the news with him over the phone and it… I mean it… I could hear the wind just kind of leave his body and it was like a punch to the gut…and I remember him telling me you know you can leave me if you want I know that you really want kids cuz he knew that was me really hard for us to have kids and I told him like I made this commitment like we’ll figure it out but he felt that he was going to hold us back from having a family that we wanted and it was just devastating because I couldn’t be there…I couldn’t tell him in person..I had sent him a message and just said, hey, we got the results, we can talk about it later. And he was like, no, I want them now… so he was the one who wanted the news…it was just a really crappy way of delivering it to him
P: yeah it’s super hard. So we had trouble getting pregnant too and the issue was in my body…you always imagined that you’d be able to have kids and so it is kind of a shocking blow to find that, oh, there’s this thing that’s been wrong that I had no idea was going on and sort of, here we are so I’m very sympathetic
D: He just felt like he’s a failure…you know, he thinks it’s so easy to to be a parent. You know he saw all his friends and family have no problems and then for him to feel like he was holding us back—it was just devastating for him
P: Yeah, that’s super hard…although, spoiler alert, it does work out
D: Yeah, it does
P: okay so so how did you guys get pregnant?
D: So in a non non way that we thought was going to happen. So we underwent a couple rounds of fertility treatment starting with, um, basically we went through the to have IVF done, did IVF
P: Okay, Danielle talks about IVF without much detail it is a physically demanding process and can be an expensive one, too. First you’ll get fertility drugs that contain FSH follicle-stimulating hormone which tell your body to produce more than just one egg per month. During this step doctors use ultrasound and bloodwork to check on your ovaries and hormone levels. The next step is egg retrieval which is likely harder than it sounds. You get an injection the day before the retrieval to make the eggs mature more quickly and the actual retrieval occurs in an outpatient surgery in which a thin needle is put into the ovaries to suction out the eggs. Your partner provides a sperm sample and then the two meet; either egg and sperm enjoy some privacy in a petri dish or the doctor can inject sperm into the egg. In the next 3 to 5 days after fertilization the resulting embryos are graded. Doctors look at the development of the embryo and consider both the cells that will form the fetus and the cells that will form the placenta. Next the woman has to take another medication to prepare the lining of the uterus to receive an embryo and finally the embryos with the highest grades are implanted in the woman’s uterus through another in-office procedure and lastly if fingers crossed all goes well a pregnancy test returns a positive result. One full cycle takes 3 weeks and according to the New York Times the average cost in the US in 2019 was between 12000 and $17,000 not including medication. To someone who has never been through it it sounds like a full-on campaign.
D: Did the procedure; didn’t work; couple months later we did FET. in November of the same year.
P: what’s what’s FET?
D: So it’s frozen embryo transfer so it’s basically IVF but we don’t have to go through all the shots all over the basically growing the embryo, basically the really uncomfortable things we have to go through which is basically transferring everything which was so much easier
P: yeah
D: So we went through that in November we did get pregnant and then it ended in a miscarriage, um, right before Christmas so devastated again, but, and I’m fast forwarding because that all led up to our second pregnancy. Our first pregnancy I fast-forwarded. Our first pregnancy we were getting ready to do IUI, which is not even to the next step of IVF, basically a very minimal form of basically fertility treatment.
P: As Danielle suggests, an IUI or intrauterine insemination is a cakewalk compared to IVF. Basically your partner provides a semen sample and the doctor takes the sperm and puts it in her uterus when you’re ovulating it’s a 10-minute procedure it happens in the office it’s completely painless
D: and was getting, I went in the day before I got a call to do blood work you have to go through all the proper steps make sure you’re not pregnant and make sure everything looks good and so we were ready to do IUI the following week and I got a call on Friday morning from the fertility clinic and I was expecting them to say “hey, bloodwork looks good, this is your appointment for this day, this time”. And she was like, “hey, we got your blood results back and you’re pregnant” and I was like, excuse me? Because we had tried for 2 years at this point, naturally, not trying to prevent anything….
P: Yeah
D: And I was like, “excuse me” and she said “you’re pregnant” and I was like, “Danielle Jones is a very common name. Are you sure you have the right one? Do you want to verify birthday or address, or anything?
P: Yeah,
D: And she was like, “no, you’re…this is the right one.” and I was like oh how can that be? We don’t know. And I remember hurrying home I just got into work that day and I hurried home and told my husband he was asleep at the time he was working second shift so of course he had just been asleep for a couple hours and told him so we end up getting pregnant in between treatment the first time with our oldest and the second time which had already kind of alluded to we went through a couple rounds of fertility treatment which ended in a miscarriage and then that was mid-November that the miscarriage went through then we naturally got pregnant in December so spent thousands of dollars for fertility treatment only to end up getting pregnant naturally twice
P: Wow…I mean that’s sort of the tricky thing with…when you are in the fertility gauntlet is there’s a limit to how much they understand so once you know right they think it’s this sperm issue, but obviously that’s not it since you got pregnant that way, so it’s hard to know really what to pinpoint and ah, ah, amazing. So…and what was the pregnancy like?
D: The first one with my oldest was horrible. They say, you know that there’s such a thing as morning sickness– mine was an all-day sickness and I was sick non-stop for 18 weeks and by the time I found out I was pregnant I was 7 weeks and it was just awful but after the 18 weeks it was smooth sailing. The pregnancy was completely normal. He came…he was 2 weeks early but he was still full term he was still 8 lb. My husband was a 10 lb baby so I’m really glad I wasn’t late.
P: No kidding!
D: yeah my second pregnancy I didn’t have any morning sickness that was really weird so completely opposite they say he was born kind of right on time but we had some complications right away he was born pretty sick he had pneumonia when he was born so he was thrust right into NICU almost immediately for over 2 weeks
P: wait, what does that mean? That means right when he was born he had pneumonia?
D: They said he had pneumonia, yeah he was born with pneumonia. I was actually really sick leading up to giving birth to him and so they said somehow it was transferred to him right when he was born and so he got pneumonia within hours of being born and they weren’t sure what it was right away they actually tested them for meningitis; they did a spinal tap on him within a couple hours of being born and you know they didn’t they weren’t sure he was on oxygen he had a feeding tube it was an awful experience
P: A little bit of context here, pneumonia is one of the leading causes of neonatal respiratory distress and is most commonly acquired at birth respiratory distress effects up to 7% of term newborns and represents one of the most common reasons for admission to the neonatal Intensive Care Unit, the NICU
D: It was one of those things where you know the first one was born healthy you don’t think anything’s wrong and then your second child basically ripped out of your arms not breathing by himself and they don’t know what’s wrong with him and you know fortunately he ended up being okay but it was a very scary situation completely opposite, I mean we were able to take my first son home within a day, and here my second one is in NICU for over 2 weeks then splitting time between being home with my three-and-a-half-year-old and being at the hospital with my newborn was really difficult
P: yeah that sounds difficult and totally scary, God It’s such a…it must have been so unexpected since when he was born he probably passed the Apgar and they thought he was fine…
D: Yeah…
P: And I’m sure waiting to figure out that it was pneumonia is a is a scary…meningitis is a terrifying thing to hear, right?
D: Yeah, and he passed one hearing screen on one side and not the other and so they just basically constituted that its fluid in the ears but obviously later down we find out there is something completely wrong with his hearing later on so it was just a very life-altering experience overall and really changed our lives for…. forever but really in a good way I’ll say
P: Tell us the story of him getting out of the NICU, like how does that happen? You are going to visit and they are taking care of him, they figure out it’s pneumonia…
D: Yup. So they figure out it’s pneumonia and they basically have to stabilize him and so it’s just a waiting game. We had to make sure his oxygen levels were going to be at a certain spot where they had to be without the breathing tube. so he was in basically the I don’t even know what they call it, the breathing apparatus where he know he’s in there he has a breathing tube, but his oxygen just kept slipping so he wasn’t breathing by himself he had fluid in his lungs and so basically was just trying to monitor that…because we couldn’t hold him for several days after he was born…so that was really hard..
P: can they give him…that’s super hard. Can they give him antibiotics, or anything? Like, what do you do for pneumonia?
D: They did end up giving him antibiotics. They gave him Gentamicin which is a very common antibiotic do they give children that has any kind of respiratory distress pneumonia stuff like that and so at first it wasn’t working so they weren’t sure again if this was a pneumonia, I mean cuz he had another unknown infection and never identified what the other infection was like he…it got really scary at one point we didn’t know if we were to bring him home because he was so weak so frail he wasn’t eating and you know I I just remember looking at him and he was just hooked up to all these monitors and machines and every time they would take him off the breathing tube and the food tube, everything will just drop and nurses would rush in and so it was really stressful I mean my husband I basically lived apart for 2 and 1/2 weeks but eventually he got better, the gentamicin cleared everything up he did Pat he did fail his hearing screen before he left again but they just kept assuring us you know it’s just fluid in his ears, it’ll be fine and you know we didn’t end up being fine we did find out there’s another issue altogether but he did end up coming home and he was healthy from there on out
P: So what’s the other issue altogether?
D: He was born deaf.
P: oh wow
D: Yup. So at first he had passed one one side of his hearing screen and so at first we’re being told that the gentamicin actually caused him to go deaf. Because if gentamicin isn’t monitored correctly it can cause deafness in children
You might wonder…why would they use antibiotics that can potentially cause deafness? This class of antibiotics is used because they are effective on a broad range of bacteria, unlike most modern antibiotics, which is great in a case like Danielle’s where they can’t pin down the source of the infection. This is particularly useful in newborns who can die from infection in one to two days, before tests could reveal the identity of the illness.
But drugs in this class can induce hearing loss. New research on mice suggests this is because inflammation in the body allows the sensory hairs of the inner ear, to take in more of the drug, making them more susceptible to the toxic elements of antibiotics
D: But we found out later that after he failed the newborn screen, we went to another hearing facility and he actually failed that one altogether, and then got a referral to Motts Children’s Hospital in Ann Arbor, where it was determined that he was born deaf and we had other genetic testing done and found out that he had connexin 26 which is the most common gene that causes deafness in children
P: to give some context for this discussion. According to the CDC, about one in 500 infants is born with or develops hearing loss. 50 to 60% of hearing loss of babies is due to genetic causes one specific genetic mutation has caused deafness and Danielle’s son in his case is a mutation in the gene known as GJB2 which contains instructions for a protein called Connexin 26, which plays an important role in the functioning of the tiny hairs or cilia, it helps to communicate sound to the brain, the mutation affects the production of this vital protein.
D: So he was actually born deaf underwent cochlear implant surgery, at a year and he’s thriving you wouldn’t even know he’s deaf, he’s three and a half years old and he’s amazing.
P: Wow. That is a lot of a lot to take in and the beginning. Did you guys sign with him before the implants or like how did you communicate?
D: Yep. So, because in the state of Michigan, they don’t do any kind of surgery until a year old– insurance companies won’t cover it. We did start signing with him he does know basic sign language, it is something that we want to continue doing with him because he is part of the deaf community without his cochlear implants, of course, he is completely deaf. He can’t even hear if he was next to a jet engine. He can’t even hear that I mean that’s how deaf he is. But we do sign with him he knows a lot of the basic signs, but he’s actually had speech therapy since he was six months old. He has been very entwined with the hearing community. He did have hearing aids. From when he was two months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they were supposed to be hearing so basically we got all of his hearing mechanisms, ready for that sound that was eventually going to be transmitted once he had that surgery. So we did have hearing aids. up until his surgery.
P: I checked in with a pediatric audiologist to learn about how hearing loss is treated and how cochlear implants work. Hi, thanks so much for coming on the show. Can you introduce yourself for us.
Dr. Hu: Thank you so much. My name is Dr. Michelle Hu I’m a pediatric audiologist in Southern California. And I also happen to be hard of hearing or deaf myself and I utilize bilateral cochlear implants.
P: Oh wow. Let’s talk for a second about Danielle’s son, what are the hearing aids doing.
Dr. Hu: So, in order to get a cochlear implant we have a very in depth evaluation process. It’s an invasive surgery, we’re not going to do that just on anybody. We want to evaluate the hearing, see what kind of hearing loss, it is the nature of it. Sometimes we take a look at the etiology of it, or where that hearing loss came from, because if the anatomy is not conducive for putting that electrode in there. We don’t want to put them through that. So, we’re doing MRIs we’re doing evaluations of the hearing. We’re also seeing do hearing aids help. Sometimes they do sometimes they don’t. You can give a person sound, but it might not be clear, kind of like when we used to go to movie theaters if the volume was louder. You would think that that would be better but sometimes it would get distorted.
P: Yeah…
Dr. Hu: we also were taking a look, do they benefit from acoustical amplification, as well as if it’s a young child. Are they are doing their diligence and teaching their child, this device is part of it, we’re gonna utilize this device for you. If that kid is just ripping it off every day and they’re not, you know, placing boundaries around that, and teaching them know, like this, these are shoes you need to wear shoes when you go outside. These are hearing aids you’re gonna wear hearing aids, so that we can see if there’s any benefit from them. If he’s not doing that. Why put your son through surgery, if he’s not going to be set up in a good environment to utilize the processes on there. That makes them very expensive surgery and a very expensive processor. And I’ve seen some of them go down the toilet. I’ve seen them fly out the car window, I’ve seen them being dropped I grew up in the Midwest. In, heating vents. So you don’t want to lose those devices, you know, so, all of these different practices are in place for a reason. But typically hearing aids are to see do they benefit from any kind of acoustical information.
P: I don’t know that much about deafness, does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or how does that work?
D: yeah so basically he didn’t have the cilia and the ears that we have that helps transmit the sound.
P: the cilia are the little hairs?
D: Yeah. Yep, so he wasn’t born with that. And so there’s not a way to correct that obviously.
P: Yeah
D: so the cochlear implants basically manipulates that system and transmit the sounds. Externally, through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain, that helps manipulate the sound for him.
P: So let’s talk about cochlear implants…
Dr. Hu: what it is basically is an electrode is placed inside the cochlea. That’s the snail shell portion of your ear, and that electrode. So let’s see– if you unravel the cochlea you roll it all out. It’s kind of like keys on a piano, it goes from low pitches to high pitches, we’re placing that electrode in there, and with a new technology, I actually am a cochlear implant specialist. I program, how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear. The electrode is stimulating the hearing nerve directly, bypassing that your lobe that outer ear is bypassing the middle ear bones and going straight to the nerve.
P: Wow, that’s amazing.
Dr. Hu: It’s pretty cool technology.
P: It’s super cool is there, a surgery to affix the outside portion? How does that work?
Dr. Hu: No, the surgery is strictly the electrode, as well as the internal processor. Basically a computer chip, if you say, I have an external processor that collects the sound like a microphone and the device takes that sound information acoustic to electrical transfers it to the inside and then play that out in there.
D: It’s just amazing. I mean he had that surgery, he had just turned one it was a day after his first birthday he went through a four and a half hour surgery. And then it was implanted or the sound was actually turned on at 13 months, and he he’s talking like any other three and a half year old and he’s only been hearing for two years.
P: That’s amazing. What was it like when they turned the sound on?
D: he was terrified. So it’s funny because you always see those videos of kids that are like smiling and laughing and our audiologist told us so like Danielle, just be aware. A lot of times, kids are terrified because they haven’t heard sound and 13, or 12 months or whatever they’re actually you know when they’re young on. And so our son was scared he cried and you know he’s in a world he has never known before.
P: Yeah
D: and he was completely silent before them. So, he was terrified at first and then it was amazing because as soon as he started hearing, he was like, looking every which way and it was just amazing to be able to finally say I love you because you think for the nine months you’re carrying your child every time you’re singing reading or saying I love you, they’re hearing that and just as a mom know that entire time they were never hearing and it was heart wrenching to actually hear that.
But now he doesn’t stop talking. It’s amazing how that works right totally amazing. So, so we think like cochlear implants. I mean one thing
P: that’s kind of amazing about that I imagine is that his hearing probably, I imagine won’t change, like other people like as you age, lose their hearing, but he’ll keep that defined hearing which is cool.
D: Yep. Yep.
P: And it doesn’t have any effect on balance or anything like that.
D: Nope. So they say that some kids can develop like headaches and stuff down the road. And some people experience vertigo but we haven’t seen anything with him he hasn’t, you know, hasn’t expressed any headaches i mean he’s three and a half so you know maybe he doesn’t know what those things are yet but we haven’t noticed any of those things with him.
Because the connexin 26 gene, it’s the most common thing it’s, it’s the easiest form of deafness to treat. There’s other forms of deafness that can cause other issues down the road like blindness or other things he tested negative for those things. So we were very fortunate that that was this, but basically this gene it’s weird because we don’t have any family deafness history in our family. So my husband actually has one part of this gene and I had the other one they were paired they caused it. And we never knew we had these genes. Yeah. So it’s just this perfect mix of, you know, opposites attract and here we go. But my oldest our oldest doesn’t have any of the genes, which is very rare. Yeah, you should have one or the other, he didn’t have any of them. Oh, very weird situation but it’s been a blessing because it brought everybody really close my mom moved home to be part of the experience and we all learned sign language and we’re trying to be involved with the deaf community as much as we can so it’s just been a very rewarding, albeit scary at first.
P: Yeah
D: you think, when your child is born deaf you think there’s, you never been to the community I grew up not knowing any deaf people so I was like oh my god my child is not going to be able to hear me. But the technology that we have today is amazing, Absolutely amazing.
P: In your time being an audiologist I bet you’ve seen like changes in technology.
Dr. Hu: Absolutely. Oh my gosh.
P: Can you tell us a little bit about that.
Dr. Hu: The hearing aids that I grew up with were analog hearing aids they were not digital at all. To adjust them you would take a little screwdriver in the back door of a hearing aid and turn up the AGC or turn up the volume here and turn up the bass and treble. Now the hearing aids are digital. They have a lot of channels, much like an equalizer on like a stereo system. We can adjust the bass we can adjust this pitch that pitch, all along the gamma, or the range of found. We have different bells and whistles on devices. My, for example, my processor now I can link up to my iPhone, and I can hear it directly in my ears with just, I get a direct auditory input from my phone and I’m listening to that person in two years. I have the advantage over someone with normal hearing, who’s holding a device, electrical sound coming out acoustical sound going into their ear and there might be environmental sounds going on everywhere. And the technology has definitely improved and think about it, we’ve got so many people in labs and doing research and engineering is doing this and that. It’s, whenever something is lacking, that creativity comes the ideas come so we want to take a quote unquote problem, and see what they can do to help.
P: That’s amazing…it is really lucky when you have an issue to have a common one, right? that’s already.
D: Absolutely
P: since like the fertility one was not common and they couldn’t figure it out like that, if you that’s like the perfect trade right that’s
Exactly how you’d want it to work out.
D: yup, absolutely
P: So one of the kids into.
D: so my six year old is really big into he’s just getting into the video games Minecraft, he got a Nintendo Switch for Christmas. So he loves those things. My youngest one is still really big into trucks fire trucks police cars, stuff like that. But they, they love being outdoors, they are outdoor kids if they could spend the whole day outside they would, but they just got a new puppy a couple months ago and they’re obsessed with their puppy. I wish they’d get along better, but they’re boys and so they fight and battle it out every day, but they’re typical boys, they love the dirt they love to get dirty. They love messes. So,
P: that sounds fun.
D: Yeah.
P: So if you could give advice to your younger self about this process of creating a family, what do you think you’d tell her.
D: Show yourself some grace. I think one of the things that my husband and I could have been better at, is you know he he tried to own a lot of the blame I tried to own a lot of the blame. And so for a long time we both tried to just show like shelter each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some grace because you have no idea what you’re what you’re going to go through in the future. But work as a team is there’s going to be things that you might not know you’re going to experience and my husband and I have been through a lot in the, you know, 10 years we’ve been married and they brought us together but that’s because we’ve had to work really hard to be a team, but we always said, we didn’t always do that. We had to work for it.
P: Yeah, that’s, that’s a that’s a useful lesson for younger you. And last time we spoke you mentioned something about what you did with the rest of your IVF embryos.
D: Yeah.
P: Why don’t you tell us about that.
D: Yeah, so, after my husband and I decided we’re done having children. We still had six embryos leftover that our fertility clinic would have just destroyed because of the fact that we carry this stuff gene. They basically consider them damaged, and so we knew that we didn’t want them destroyed because they were years of tears and, you know, all these hopes that we had for children. So we decided we..
P: sorry sorry pause for one second here. That’s kind of a crazy decision. It was to suggest like these are not like I’m surprised that they would do that and I would imagine there are many couples who would love to have those
D: absolutely we’ll find that out. Yeah. Because there’s a lot of humans that had the same kind of troubles we did. Yeah. And so we decided to, there was somebody that I knew that went through a private embryo adoption and I reached out to her and I said hey, how did you go about this. And she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption,
P: wait can you talk a little bit about that I’ve never heard the term embryo adoption.
D: Yeah, so it’s basically basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not. They’re not born right so you still have to go through the same process, there’s still other attorney involved there’s still paperwork that has to be filled out. We still had to sign over legal rights to these embryos as if there were children. We had to go through medical backgrounds family history backgrounds, we had to disclose a lot of personal information to whatever family we ended up going through as to the family that we chose. So, there’s still a lot of legality around it. It’s just not the same thing that people would picture as far as going into a facility looking to adopt children that are already born, that are in a system under foster care. These are tissues or embryos that are sitting frozen in a fertility clinic waiting to go through a procedure or not. So very different than what most people think is embryo, or an adoption process if you will.
P: Yeah. It’s hard to get accurate numbers on how common this practice is. According to the CDC, in 2018, approximately 1.9% of all infant births in the US, were conceived using assisted reproductive technology where the main technology is IVF. There’s a lot of variation across place and time, the numbers of IVF births vary a lot by states in part likely driven by the availability of fertility clinics. So for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people, but Pennsylvania has 15 fertility clinics and Illinois has 25. As of 2017, Wyoming and New Hampshire had no clinics. And according to a New York Times article for 2019 of the 2 million transfers of embryos to a woman’s uterus recorded by the CDC. Between the years 2000 and 2016 only 16,000 were donor embryos. but this number is growing too.
D: So what we did is we got in touch with this lady on his Facebook group and she was like okay we’ll put together a profile of what you’re looking for, give a little bit of history on yourselves. And so that’s exactly what we did is a Friday afternoon, it was like 12 o’clock in the afternoon. And we obviously the biggest thing for us is we wanted to be as open and honest as possible so we said hey you know, we do carry this gene, it does cause 25% deafness and these genes so six of them so the likelihood that one’s going to be deaf is very high, obviously.
So we knew that it was going to be hard some people because you know taking on the responsibility of having a deaf child it’s costly right it’s expensive it’s emotionally draining, it’s all of those things but it’s also very rewarding to have to find the right person. And we knew that we didn’t want somebody to have one of our children and then say, oh I This isn’t what I signed up for this is now a burden. Right. And so we want to be very careful on our selection,
P: Since this is a drawn out process it’s interesting to me that you decided to do all this work transfer the embryos what was that conversation like between you and your husband,
D: my husband and I? yeah. So we decided on doing this when our youngest was one. It was actually right after his first birthday, but we felt that we weren’t we were definitely don’t want to have more children, and those embryos had sat there for upwards of five years at that point. And so we wanted to give them the opportunity opportunity at life, if you will. And we knew that there were so many other families that were struggling like us and so we really wanted to bless somebody like that we have a very strong faith and so we wanted to give back if we could, but we did ask our family’s blessing for that, because it’s a big thing. I mean, my parents technically have grandchildren in different state.
P: Yeah.
D: Oh, it was a big responsibility to ask blessings for people and understand that if this worked for somebody that we were going to have biological children in somebody else’s care in different state. Yeah, we went through a counseling for it. We did go through an interview process with the family that we ended up choosing. And you know we did know exactly what we’re getting ourselves into, so it wasn’t. I know it sounds, it was a pretty quick process. And it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it. And I think it’s been so rewarding since because once we actually put this profile up within two hours we had 10 families that were interested.
P: That’s amazing.
D: In all of them knew that there was a possibility of them being deaf. Right. And the amazing thing about it so I always say that there’s a God wink right and so for us our God wink was the family that we chose the mother has a deaf education background.
P: Oh wow
D: and the husband’s a pastor. So, if anybody could handle
P: yeah
D: what was meant to be thrown at them, if any of these children were gonna be born. It was going to be this couple. They’re originally from the same area as us, they’re around the same age as us. And after we got off this interview, if you will, it was a two hour interview. And it felt like we were long lost friends.
P: I literally have goosebumps. that is so amazing. You couldn’t have picked a more perfect pair.
D: Yeah. And they ended up it ended up working, they ended up having twin daughters. When I have a twin sister so it’s really cool. I mean, we get updates we’re friends on Facebook. They send us they sent us a beautiful Christmas gift this year with their two Christmas ornament with their fingerprints on it as well and we send them birthday gifts and Christmas gifts and so some great relationship to open adoptions so if we ever want to meet in the future we can, if our boys want to meet their sisters in the future they can. That’s something we both agreed we wanted we didn’t want to close this with my kids didn’t know their sisters and vice versa. And so it’s been a really great blessing. It really has.
P: That is amazing. How old are the girls?
D: They turned a year in May, so they’re a little over a year and a half, and they share a birthday with my brother in law too so it’s kind of crazy,
P: oh my god that’s so connected Wow. And are you guys like physically far apart or can you get together easily or…
D: No they’re in Iowa, so I’m in Michigan they’re in Iowa, so they’re not very far apart, and they have a lot of family in the state of Michigan so I feel like they’re super close.
P: That’s amazing. Have you met them in person?
D: I have not. No. I feel like we have because I see him on Facebook all the time and it pictures all the time and it’s just crazy.
P: That’s amazing. It’s such a beautiful ending for this story because it you literally have given family to this to these other people which is just an amazing thing
D: and then the cool update on that is, she got naturally pregnant again. And so now we have four embryos left. And so it part of our agreement, we get those back my husband and I, and so we get to bless another family with
P: Wow,
D: and we, my husband and I decided that we want the other couple. The twins mother and father to be part of that process because now. Not only are my boys involved but now they have sisters so we’re gonna select another family and potentially a boss another family with kids.
P: That is amazing and the and the people who are going for embryo adoptions I’m assuming either can’t afford IVF and are having trouble getting pregnant and so this is kind of what they can do.
D: Yeah,
P: and embryo adoption is less it’s less expensive than IVF?
D: embryo adoption is typically a gift, they don’t typically pay for anything other than just the process of the implantation which is around $2,000 Plus it’s very inexpensive compared to IVF IVF is 10 to 12, 15 upwards dependent upon what you go through so this has been a gift and it’s just been a really great process great experience.
P: Oh my god, amazing. Thank you so much for telling us the story Danielle I’m gonna I’m gonna look out for that now because that’s such a cool thing to do. And thanks for thanks for sharing everything about the story
D: I really thank you for having me and letting me share it.
P: Thanks again to Dr. Michelle who for her insights about hearing aids and cochlear implants, and for giving me advice about how to get transcripts for the audio you’re hearing today. Doctor Hu has a Facebook group, where she regularly shares information about what she calls “conquering life with hearing loss”, called mama Hu hears, and I’ll put a link to that in the extended show notes, along with the audio transcript, all of which can be found at war stories from the Womb.com. Thanks to Danielle for sharing this incredible story, links to resources about many of the issues we discussed, can also be found in the war stories website. And thank you for listening. If you liked this episode, feel free to like and subscribe and leave a review. If you’d like to contribute your story to the podcast, go to the war stories website and sign up. We’ll be back soon with another amazing story about making the journey from person to parent.
Transcribed by https://otter.ai
this class of antibiotics is used because they’re effective on a broad range of bacteria which is unlike most modern antibiotics this is great in case like Danielle’s were they can’t pin down the source of the infection
score test to reveal the identity of the illness but we found out later that after he failed the newborn screen we went to another hearing facility and he actually failed together and I got a referral to Mott’s Children’s Hospital in Ann Arbor where it was determined that he was on ‚Äì and we had other genetic testing Don and find out that he had Connexus 26 is the most common Gene that causes deafness in children do you some context for this discussion according to the CDC about 1 and 500 infants are born with or develops hearing loss 50 to 60%
specific genetic mutation has caused deafness in Danielson
jb2
which plays an important role in the functioning of the tiny hairs that help the communicate sounds of the brain the mutation affects the production of this vital protein so you was actually born. Underwent cochlear implant surgery a year and he’s thriving you wouldn’t even know he is. He’s three and a half years old and he’s amazing wow that is a lot of a lot to take in at the beginning
because in the state of Michigan I don’t do any kind of surgery until the year old insurance companies won’t cover it we did start signing with him he does know basic sign language it is something that we want to continue doing with him because he has for the deaf Community without his ocular implants of course I’m here to is completely. He can’t even hear if he was next to a jet engine he can’t even hear that I mean that’s how is the music signs but he’s actually had speech therapy since he was 6 months old
Community I’m he did have hearing aids from when he was 2 months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they’re supposed to be here and so basically got all of his hearing mechanisms ready for that sound that was eventually going to be transmitted once he had that surgery so we did have hearing I’m up until his surgery
pediatric audiologist to learn about how is hearing loss A treated and how Cochlear implants work
thank you so much my name is dr. Michelle who I’m a pediatric audiologist in Southern California and I also happen to be hard of hearing or just myself and I utilize bilateral
what are the hearing aids doing in order to get a cochlear implant we have a very in-depth evaluation process if an invasive surgery we’re not going to do that just on anybody we want to evaluate the hearing see what kind of hearing loss that is the nature of it sometimes we take a look at the etiology aware that hearing loss came from because if he and Anatomy is not conducive for putting that electrode in there we don’t want to
elevations of the hearing we’re also seeing do hearing aids help sometimes they do sometimes you can give a person sound but it might not be clear kind of like when it’s a good movie theater if a volume was loud are you would think that that would be better but sometimes it would get distorted yeah we also thought we were picking what do they benefit from acoustical amplification as well as if it is a young child are they doing their diligence and teaching their child this device is we’re going to utilize this device for you if I can just ripping it off every day and they’re not you know placing boundaries around that and teaching them know I’ll be there shoes you need to wear shoes when you go outside either hearing is going to be here so that we can see if there’s any benefit from them if he’s not doing that why put your son through a surgery not going to be set up in a good environment to utilize the processor down there
and I’ve seen some of them go down the toilet by out the car window I’ve seen them being dropped in the Midwest
you don’t want to do those devices no different practices are in place for a reason but typically hearing aids are to see do they have benefit from any kind of information
does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or
do you have that helps transmit the sound so he wasn’t a real hair that’s a lawyer so he wasn’t born with that it was not a way to correct that obviously has basically manipulates that system and transmit The Sounds externally through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain that helps manipulate the song for hims
what it is basically is an electrode is placed inside the cochlea that’s the snail shell portion of your ear and that electrode so let’s see if you unravel the cochlea evil out is kind of like he’s on a piano it goes low pitches to high pitches replacing that electrode in there and with the new technology I actually am I program how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear the electrical stimulating the hearing nerve directly bypassing that your load the outer ear is bypassing the middle ear bones and going straight to the nerve amazing
is there a surgery to fix the outside portion like has that the surgery is the electrode as well as the internal processor basically a computer check my view say I have an external processor that collects the sound make a microphone and the device take that sound from acoustic to electrical transfer that to the inside and then plays it out in there so it’s just amazing I mean you had that surgery he had just turned one it was a day after his first birthday he went through a four and a half hour surgery and then it was implanted or the sun was actually turned on at 13 months and he’s talking like any other three and a half year olds and he’s only been here for 2 years that’s amazing you’re terrified so you it’s funny cuz you always see those videos of kids that are like smiling and laughing and are on audiologist told us so I didn’t yell just be aware a lot of times kids are terrified because they haven’t heard sound in 13 12 months or whatever they’re actually gone and so are some was scared he cried and you know he’s in a world has never known before yeah and he was completely silent before then so he was terrified at first and then it was amazing as as soon as you start hearing sounds he was like looking Every Which Way and it was just amazing to be able to finally say I love you because you think for the nine months you’re killing your child every time you’re singing her reading or saying I love you they’re sharing that and just as I know that entire time they were actually hear that but now he doesn’t start talking and it’s amazing how that works right. Totally amazing so so we think are Cochlear implants
he’s gearing probably imagined won’t change like other people as you age
it’ll have any effect on balance or anything like that
and some people experience vertigo but we haven’t seen anything with him he hasn’t do you know it hasn’t expressed any headaches and he’s two and a half so be done maybe he doesn’t know what those things are but we haven’t noticed any of those things with him because the connexin 26 Gene and it’s the most common thing is it’s the easiest form of deafness to treat about this other forms of Darkness that can cause other issues on the road like blindness or other things he tested negative for those things I’m so we were very fortunate that that was this but basically it’s weird because we don’t have any family definition history in our family so my husband actually has one part of the scene I had the other one they were. They caused it and we never knew we had those jeans yeah so it’s just as perfect mix of you know Opposites Attract in here we go by my oldest are all this doesn’t have any of the genes which is very rare the other he didn’t have any of them wow very weird situation but it’s been a blessing because I brought everybody really close my mom moved home to this to be part of the experience and we all learn sign language and we’re trying to be involved with the desk Community as much as we can so just going to be very rewarding I’ll be at scary at first
you never going to have the community I grew up not knowing that people so I was like my God my child be able to hear me but the technology that we have today is amazing actually amazing
audiologist I bet you’ve seen like changes in technology absolutely
the hearing aid that I grew up with were analog hearing and they were not digital at all to adjust them you would take a little screwdriver in the back door of a hearing aid and turn up turn up the volume here turn up the bass and treble now the hearing aids are digital they have a lot of channels much like an equalizer on like a stereo system we can adjust the bass we can adjust this pitch that pitch all along the Gamma or the range of sound we have different bells and whistles on devices my freaking for my processors now I can link up to my iPhone and I can hear it directly in my ears with just I get a direct auditory input from my phone and I’m listening to that person into ears but I have the advantage over someone with normal hearing who’s holding a device electrical sound coming out acoustical sound going into the ear and there might be environmental sounds
definitely improved. So many people in my eye
whenever something is lacking that creativity comes the ideas come so people want to take a problem and see what they can do to
is really lucky when you have an issue to have a comment on right
figure it out
Gerald really big into he’s just getting into the video games Minecraft he got a Nintendo switch for Christmas so he loves those things my youngest one is still really big in the trucks fire trucks police car sound like that but they did love being outdoors they are outdoor kids if they could spend the whole day outside they would but they just got a new puppy a couple months ago and they’re obsessed with her I was taking a long better but they’re boys and so they fight and battle it out everyday but they’re typical boys they love the dirt they love to get their asses so yeah so if you could give advice to younger self about this process of creating a family what do you think you could tell her show yourself some Grace I think one of the things that my husband and I could have been better off is you know he he tried to own a lot of the blame I try to own a lot of the blame and so for a long time and we will try to destroy each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some Grace cuz you have no idea what your future but work as a team if there’s going to be things that you might not know your inexperience and my husband I have been through a lot and that the 10 years we’ve been married and they brought us together but that’s because it had to work really hard to be a team but we always and we didn’t always do that we had to work for it yeah that’s that’s useful lesson for younger you and what time we spoke you mentioned something about what you did with the rest of your IVF
yeah so after my husband and I decided we’re done having children we still had 6 embryos left over that are fertility clinic would have destroyed because of the fact that we carry this stuff Jean they basically consider them damaged and so we knew that we’d let them destroy cuz they were years of tears and you know it is all these hopes that we had four children so we decided to you
these are not act like I’m surprised that they would do that and I would imagine they’re many couples who would love to have those absolutely will find that out ya had the same kind of troubles we did and so we decided to there was somebody there any other ones through private embryo adoption and it was up to her and I said hey how did you go about this and she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption
adoption yeah so it’s basically it’s basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not they’re not boring right so go to that the same process is still an attorney involved or so paperwork that has to be filled by we still had to sign over legal rights to these embryos as if they were children we headed to school to Medical I’m backgrounds Give me history backgrounds we had to disclose a lot of personal information to whatever family ended up going through a stir the family that we chose so it’s still a lot of legality around it it’s just not the same thing that people have picture as far as going into a facility looking to adopt her that already born that are in the system under foster care either tissues or embryos are sitting Frozen and fertility clinic waiting to go through procedure or not so very different than what most people think or an induction process it’s hard to get that route numbers on how common is practices according to the CDC in 2018 approximately 1.9% of all infant births in the US were conceived using assisted reproductive technology where the main technology is IVF there’s a lot of variation across place and time the numbers of IVF for it’s very loud by States and part likely driven by the availability of fertility clinics so for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people but Pennsylvania has 55 as of 2017 Wyoming in New Hampshire has no class and cream to a New York Times article of the two million transfers of embryos to a woman’s uterus recorded by the CDC between the years 2000 and 2016 only $16,000 donor embryos that this number is growing to so what we did is we got in touch with this lady on his Facebook group and she was like okay well put together a profile of what you’re looking for yourselves and so that’s exactly what we did is a Friday afternoon and we obviously the biggest thing for us as we want to be as open as possible so we said hey you know we do carry this team it does cost 25% deafness and these jeans so sick of the way clear that one’s going to be very high obviously so we knew that was going to do to her some people because you know taking on the responsibility
emotionally draining it’s all those things was also very rewarding to have to find the right person and we knew that we didn’t want somebody to have one of our children and then say
we want to be very careful on our selection
this is a drawn-out process it just seems to me that you decided to do all this work to transfer the embryos what what what was that conversation like
so we decide on doing this when our youngest was it was actually right after his first birthday but we felt that we were we were definitely don’t have any children and those emeralds had sat there for upwards of five years and so we wanted to give them the opportunity opportunity at life if you will and we knew that they were so many other families that we’re struggling in life we really wanted to blast somebody like that we have a very strong face and so we wanted to get back if we could but we did ask her family’s blessing for that because the big thing I mean my parents are we have grandchildren in different state though it was a big responsibility to ask blessings for people and understand that at this work for somebody that we were going to have biological children in somebody else’s care in different state yeah we went to a counseling for it we did go through an interview process for the family that we in choosing and you know we did know exactly what we’re getting ourselves into you so it wasn’t I don’t want to go there pretty quick process and it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it and I think it’s been so rewarding sense because once we actually put this profile up with in 2 hours at ten families that were interested that’s amazing and all of them knew that there’s a possibility of them being. And the amazing thing about it
has a death education background so that anybody could handle yeah
it was going to be there originally from the same areas us there around the same age as on us and after we got off this interview with UL is a 2-hour interview and if a long-lost friends I really have Goosebumps that is so amazing, more perfect pear and they end up in the end up working they end up having twin daughters are so it’s really cool I mean we get updates were friends on Facebook they sent us they sent us a beautiful Christmas gift this year with their to Christmas ornament with your fingerprints on it
Christmas gifts centers in great relationship is an open adoption so if we ever want to meet in the future we can if our boys when they meet their sisters in the future they can that’s something we both agree baby wanted we don’t want to close it so that my kids and no other sisters and vice versa and so it’s been a really great blessing it really has amazing how old are the girls they turned a year in May so they’re a little over a year now and I share a birthday with my brother-in-law she was kind of crazy oh my god wow
no there in Iowa so I’m in Michigan there in Iowa so they’re not very far apart and they have a lot of family in the state of Michigan so I feel like they’re super close that’s amazing I am not know I feel like we have cuz I seen on Facebook all the time and all the time and it’s just crazy that’s amazing
it didn’t you literally have given family to this other people which is an amazing thing and so now we have for embryos left and so it part of our agreement we get those back my husband and I and so we get to bless another family with me and we decided that we want the other couple the twins mother and father to be part of that process because now not only are my boys involved but now they have sisters or going to start another family and potentially it was another family with kids that is amazing people who are going for embryo adoption assuming either can’t afford IVF and are having trouble getting pregnant and so this is what they can do
biggest they don’t do anything other than just the process of the implantation which is around $2,000 cuz it’s very inexpensive compared to eyevea 10 to 12 15 uppers depend on the phone to go through so this is been a guest and it it’s just been a really great process great experience oh my God amazing thank you so much I want to look out for that now cuz that’s such a cool thing to do
it’s against dr. Michelle who for her insights about hearing aids and Cochlear implants for giving me advice about how to get transcripts for the art of your hearing today
what she calls
can be found at War stores in the room. Com thanks to Danielle forshee
Yahoo website and thank you for listening if you like this episode
you’re sweeter podcast
Hi welcome to the show. Can you tell us your name and where you’re from?
D: Yup, my name is Danielle and I am from Kalamazoo Michigan
P: Nice, and Danielle, how many kids do you have?
D: I have two kids, book boys ages, 6 and 3.
P: so young….before you got pregnant what did you think pregnancy would be like?
D: I thought it’d be really easy to get pregnant my older sister got pregnant very easily, very young, as did my mother.
So I assumed that as soon as my husband and I were ready to get pregnant it would happen basically overnight when we wanted it to happen and so I just assumed when we already it would happen.
P: Did you think pregnancy would be easy? Did you have an idea of what that process will be like?
D: Yeah, I’ve heard stories about being really easy for some people, being really hard for others I pictured that maybe I would kind of fall somewhere in between. I felt like I was in pretty decent shape; that if I kept working out that it would be fine for me but you know my mom had some twins that were born very early so I knew that there was a likelihood that I might have some issues but I didn’t really know what to expect to be honest.
P: Yeah, was it easy to get pregnant that first time?
D: It wasn’t. It wasn’t easy at all. It took us quite a while to get pregnant.
P: How long did you…like how long was the process and did you end up turning to doctor’s to be involved? Or, how did that go?
D: Yeah, so we got married in May of 2011 and we started trying almost immediately and basically determined pretty quickly that it wasn’t going to happen overnight. We started determining that we were going to have to have somebody help us you know obviously fertility clinic. We reached out to…almost… I think it was like in the fall that year. We always assume that you wait 6 months you try if that doesn’t work and there might be something else going on so we went to an open house that they had one evening and sat down kind of learned, you know, what are some of the causes you know what it could be and we got a free consultation with them and really go into what could be causing it and really found out what our next steps would be which included a lot of testing.
P: Yeah, the testing is not…not as fun as you might think it would be.
D: No yeah I mean it wasn’t just myself that went through it, it was my husband. So lots of pokes and prodded and lots of tests and x-rays blood work you know a lot of uncomfortable tests, very non discrete tests, you know, invasive
P: totally
D: But a lot of necessary tests to really dive into the nitty-gritty about what’s going on. My husband is 8 years older, so they thought maybe something to do with age. I was younger so there really wasn’t a lot of concern as to what was causing issues and it took them quite a while to figure it out. They thought it could be related to a hernia my husband had so he ended up having hernia surgery. It didn’t really help anything. They put us on medications. They did, you know, different procedures. I mean there were so many trial and error that they tried before they really determine what the cause was.
P: So it sounds like they figured out what the cause was.
D: It was yeah they determined that my spouse had a very low sperm count and basically was disappearing before their eyes and they didn’t really know why. They said it could have been caused from injury from when he was younger he was really active in sports so it could have been one, you know, injury to the groin that maybe he didn’t even know could have had the impact they had on him today… but a normal person has a 20,000 every time they ejaculate and he was like 1400 so very very low.
P: Oh wow
it sounds like Danielle’s partner had a semen analysis and his sperm count came back low. To give some context to the numbers according to the Mayo Clinic normal sperm densities range from 15 million to greater than 200 million sperm per millimeter of semen. You are considered to have a low sperm count if you have less than 15 million sperm per milliliter, or less than 39 million sperm per total ejaculate.
D: and so basically their course of action was to freeze some right away to try to retain as much as they could before they were gone.
P: Yeah, yeah that’s a little scary.
D: Yeah
P: How did he take that? Was he ok or it was upsetting or…
D: No he was devastated because they called me to tell the news because I was basically the contact I had to deliver the news with him over the phone and it… I mean it… I could hear the wind just kind of leave his body and it was like a punch to the gut…and I remember him telling me you know you can leave me if you want I know that you really want kids cuz he knew that was me really hard for us to have kids and I told him like I made this commitment like we’ll figure it out but he felt that he was going to hold us back from having a family that we wanted and it was just devastating because I couldn’t be there…I couldn’t tell him in person..I had sent him a message and just said, hey, we got the results, we can talk about it later. And he was like, no, I want them now… so he was the one who wanted the news…it was just a really crappy way of delivering it to him
P: yeah it’s super hard. So we had trouble getting pregnant too and the issue was in my body…you always imagined that you’d be able to have kids and so it is kind of a shocking blow to find that, oh, there’s this thing that’s been wrong that I had no idea was going on and sort of, here we are so I’m very sympathetic
D: He just felt like he’s a failure…you know, he thinks it’s so easy to to be a parent. You know he saw all his friends and family have no problems and then for him to feel like he was holding us back—it was just devastating for him
P: Yeah, that’s super hard…although, spoiler alert, it does work out
D: Yeah, it does
P: okay so so how did you guys get pregnant?
D: So in a non non way that we thought was going to happen. So we underwent a couple rounds of fertility treatment starting with, um, basically we went through the to have IVF done, did IVF
P: Okay, Danielle talks about IVF without much detail it is a physically demanding process and can be an expensive one, too. First you’ll get fertility drugs that contain FSH follicle-stimulating hormone which tell your body to produce more than just one egg per month. During this step doctors use ultrasound and bloodwork to check on your ovaries and hormone levels. The next step is egg retrieval which is likely harder than it sounds. You get an injection the day before the retrieval to make the eggs mature more quickly and the actual retrieval occurs in an outpatient surgery in which a thin needle is put into the ovaries to suction out the eggs. Your partner provides a sperm sample and then the two meet; either egg and sperm enjoy some privacy in a petri dish or the doctor can inject sperm into the egg. In the next 3 to 5 days after fertilization the resulting embryos are graded. Doctors look at the development of the embryo and consider both the cells that will form the fetus and the cells that will form the placenta. Next the woman has to take another medication to prepare the lining of the uterus to receive an embryo and finally the embryos with the highest grades are implanted in the woman’s uterus through another in-office procedure and lastly if fingers crossed all goes well a pregnancy test returns a positive result. One full cycle takes 3 weeks and according to the New York Times the average cost in the US in 2019 was between 12000 and $17,000 not including medication. To someone who has never been through it it sounds like a full-on campaign.
D: Did the procedure; didn’t work; couple months later we did FET. in November of the same year.
P: what’s what’s FET?
D: So it’s frozen embryo transfer so it’s basically IVF but we don’t have to go through all the shots all over the basically growing the embryo, basically the really uncomfortable things we have to go through which is basically transferring everything which was so much easier
P: yeah
D: So we went through that in November we did get pregnant and then it ended in a miscarriage, um, right before Christmas so devastated again, but, and I’m fast forwarding because that all led up to our second pregnancy. Our first pregnancy I fast-forwarded. Our first pregnancy we were getting ready to do IUI, which is not even to the next step of IVF, basically a very minimal form of basically fertility treatment.
P: As Danielle suggests, an IUI or intrauterine insemination is a cakewalk compared to IVF. Basically your partner provides a semen sample and the doctor takes the sperm and puts it in her uterus when you’re ovulating it’s a 10-minute procedure it happens in the office it’s completely painless
D: and was getting, I went in the day before I got a call to do blood work you have to go through all the proper steps make sure you’re not pregnant and make sure everything looks good and so we were ready to do IUI the following week and I got a call on Friday morning from the fertility clinic and I was expecting them to say “hey, bloodwork looks good, this is your appointment for this day, this time”. And she was like, “hey, we got your blood results back and you’re pregnant” and I was like, excuse me? Because we had tried for 2 years at this point, naturally, not trying to prevent anything….
P: Yeah
D: And I was like, “excuse me” and she said “you’re pregnant” and I was like, “Danielle Jones is a very common name. Are you sure you have the right one? Do you want to verify birthday or address, or anything?
P: Yeah,
D: And she was like, “no, you’re…this is the right one.” and I was like oh how can that be? We don’t know. And I remember hurrying home I just got into work that day and I hurried home and told my husband he was asleep at the time he was working second shift so of course he had just been asleep for a couple hours and told him so we end up getting pregnant in between treatment the first time with our oldest and the second time which had already kind of alluded to we went through a couple rounds of fertility treatment which ended in a miscarriage and then that was mid-November that the miscarriage went through then we naturally got pregnant in December so spent thousands of dollars for fertility treatment only to end up getting pregnant naturally twice
P: Wow…I mean that’s sort of the tricky thing with…when you are in the fertility gauntlet is there’s a limit to how much they understand so once you know right they think it’s this sperm issue, but obviously that’s not it since you got pregnant that way, so it’s hard to know really what to pinpoint and ah, ah, amazing. So…and what was the pregnancy like?
D: The first one with my oldest was horrible. They say, you know that there’s such a thing as morning sickness– mine was an all-day sickness and I was sick non-stop for 18 weeks and by the time I found out I was pregnant I was 7 weeks and it was just awful but after the 18 weeks it was smooth sailing. The pregnancy was completely normal. He came…he was 2 weeks early but he was still full term he was still 8 lb. My husband was a 10 lb baby so I’m really glad I wasn’t late.
P: No kidding!
D: yeah my second pregnancy I didn’t have any morning sickness that was really weird so completely opposite they say he was born kind of right on time but we had some complications right away he was born pretty sick he had pneumonia when he was born so he was thrust right into NICU almost immediately for over 2 weeks
P: wait, what does that mean? That means right when he was born he had pneumonia?
D: They said he had pneumonia, yeah he was born with pneumonia. I was actually really sick leading up to giving birth to him and so they said somehow it was transferred to him right when he was born and so he got pneumonia within hours of being born and they weren’t sure what it was right away they actually tested them for meningitis; they did a spinal tap on him within a couple hours of being born and you know they didn’t they weren’t sure he was on oxygen he had a feeding tube it was an awful experience
P: A little bit of context here, pneumonia is one of the leading causes of neonatal respiratory distress and is most commonly acquired at birth respiratory distress effects up to 7% of term newborns and represents one of the most common reasons for admission to the neonatal Intensive Care Unit, the NICU
D: It was one of those things where you know the first one was born healthy you don’t think anything’s wrong and then your second child basically ripped out of your arms not breathing by himself and they don’t know what’s wrong with him and you know fortunately he ended up being okay but it was a very scary situation completely opposite, I mean we were able to take my first son home within a day, and here my second one is in NICU for over 2 weeks then splitting time between being home with my three-and-a-half-year-old and being at the hospital with my newborn was really difficult
P: yeah that sounds difficult and totally scary, God It’s such a…it must have been so unexpected since when he was born he probably passed the Apgar and they thought he was fine…
D: Yeah…
P: And I’m sure waiting to figure out that it was pneumonia is a is a scary…meningitis is a terrifying thing to hear, right?
D: Yeah, and he passed one hearing screen on one side and not the other and so they just basically constituted that its fluid in the ears but obviously later down we find out there is something completely wrong with his hearing later on so it was just a very life-altering experience overall and really changed our lives for…. forever but really in a good way I’ll say
P: Tell us the story of him getting out of the NICU, like how does that happen? You are going to visit and they are taking care of him, they figure out it’s pneumonia…
D: Yup. So they figure out it’s pneumonia and they basically have to stabilize him and so it’s just a waiting game. We had to make sure his oxygen levels were going to be at a certain spot where they had to be without the breathing tube. so he was in basically the I don’t even know what they call it, the breathing apparatus where he know he’s in there he has a breathing tube, but his oxygen just kept slipping so he wasn’t breathing by himself he had fluid in his lungs and so basically was just trying to monitor that…because we couldn’t hold him for several days after he was born…so that was really hard..
P: can they give him…that’s super hard. Can they give him antibiotics, or anything? Like, what do you do for pneumonia?
D: They did end up giving him antibiotics. They gave him Gentamicin which is a very common antibiotic do they give children that has any kind of respiratory distress pneumonia stuff like that and so at first it wasn’t working so they weren’t sure again if this was a pneumonia, I mean cuz he had another unknown infection and never identified what the other infection was like he…it got really scary at one point we didn’t know if we were to bring him home because he was so weak so frail he wasn’t eating and you know I I just remember looking at him and he was just hooked up to all these monitors and machines and every time they would take him off the breathing tube and the food tube, everything will just drop and nurses would rush in and so it was really stressful I mean my husband I basically lived apart for 2 and 1/2 weeks but eventually he got better, the gentamicin cleared everything up he did Pat he did fail his hearing screen before he left again but they just kept assuring us you know it’s just fluid in his ears, it’ll be fine and you know we didn’t end up being fine we did find out there’s another issue altogether but he did end up coming home and he was healthy from there on out
P: So what’s the other issue altogether?
D: He was born deaf.
P: oh wow
D: Yup. So at first he had passed one one side of his hearing screen and so at first we’re being told that the gentamicin actually caused him to go deaf. Because if gentamicin isn’t monitored correctly it can cause deafness in children
You might wonder…why would they use antibiotics that can potentially cause deafness? This class of antibiotics is used because they are effective on a broad range of bacteria, unlike most modern antibiotics, which is great in a case like Danielle’s where they can’t pin down the source of the infection. This is particularly useful in newborns who can die from infection in one to two days, before tests could reveal the identity of the illness.
But drugs in this class can induce hearing loss. New research on mice suggests this is because inflammation in the body allows the sensory hairs of the inner ear, to take in more of the drug, making them more susceptible to the toxic elements of antibiotics
D: But we found out later that after he failed the newborn screen, we went to another hearing facility and he actually failed that one altogether, and then got a referral to Motts Children’s Hospital in Ann Arbor, where it was determined that he was born deaf and we had other genetic testing done and found out that he had connexin 26 which is the most common gene that causes deafness in children
P: to give some context for this discussion. According to the CDC, about one in 500 infants is born with or develops hearing loss. 50 to 60% of hearing loss of babies is due to genetic causes one specific genetic mutation has caused deafness and Danielle’s son in his case is a mutation in the gene known as GJB2 which contains instructions for a protein called Connexin 26, which plays an important role in the functioning of the tiny hairs or cilia, it helps to communicate sound to the brain, the mutation affects the production of this vital protein.
D: So he was actually born deaf underwent cochlear implant surgery, at a year and he’s thriving you wouldn’t even know he’s deaf, he’s three and a half years old and he’s amazing.
P: Wow. That is a lot of a lot to take in and the beginning. Did you guys sign with him before the implants or like how did you communicate?
D: Yep. So, because in the state of Michigan, they don’t do any kind of surgery until a year old– insurance companies won’t cover it. We did start signing with him he does know basic sign language, it is something that we want to continue doing with him because he is part of the deaf community without his cochlear implants, of course, he is completely deaf. He can’t even hear if he was next to a jet engine. He can’t even hear that I mean that’s how deaf he is. But we do sign with him he knows a lot of the basic signs, but he’s actually had speech therapy since he was six months old. He has been very entwined with the hearing community. He did have hearing aids. From when he was two months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they were supposed to be hearing so basically we got all of his hearing mechanisms, ready for that sound that was eventually going to be transmitted once he had that surgery. So we did have hearing aids. up until his surgery.
P: I checked in with a pediatric audiologist to learn about how hearing loss is treated and how cochlear implants work. Hi, thanks so much for coming on the show. Can you introduce yourself for us.
Dr. Hu: Thank you so much. My name is Dr. Michelle Hu I’m a pediatric audiologist in Southern California. And I also happen to be hard of hearing or deaf myself and I utilize bilateral cochlear implants.
P: Oh wow. Let’s talk for a second about Danielle’s son, what are the hearing aids doing.
Dr. Hu: So, in order to get a cochlear implant we have a very in depth evaluation process. It’s an invasive surgery, we’re not going to do that just on anybody. We want to evaluate the hearing, see what kind of hearing loss, it is the nature of it. Sometimes we take a look at the etiology of it, or where that hearing loss came from, because if the anatomy is not conducive for putting that electrode in there. We don’t want to put them through that. So, we’re doing MRIs we’re doing evaluations of the hearing. We’re also seeing do hearing aids help. Sometimes they do sometimes they don’t. You can give a person sound, but it might not be clear, kind of like when we used to go to movie theaters if the volume was louder. You would think that that would be better but sometimes it would get distorted.
P: Yeah…
Dr. Hu: we also were taking a look, do they benefit from acoustical amplification, as well as if it’s a young child. Are they are doing their diligence and teaching their child, this device is part of it, we’re gonna utilize this device for you. If that kid is just ripping it off every day and they’re not, you know, placing boundaries around that, and teaching them know, like this, these are shoes you need to wear shoes when you go outside. These are hearing aids you’re gonna wear hearing aids, so that we can see if there’s any benefit from them. If he’s not doing that. Why put your son through surgery, if he’s not going to be set up in a good environment to utilize the processes on there. That makes them very expensive surgery and a very expensive processor. And I’ve seen some of them go down the toilet. I’ve seen them fly out the car window, I’ve seen them being dropped I grew up in the Midwest. In, heating vents. So you don’t want to lose those devices, you know, so, all of these different practices are in place for a reason. But typically hearing aids are to see do they benefit from any kind of acoustical information.
P: I don’t know that much about deafness, does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or how does that work?
D: yeah so basically he didn’t have the cilia and the ears that we have that helps transmit the sound.
P: the cilia are the little hairs?
D: Yeah. Yep, so he wasn’t born with that. And so there’s not a way to correct that obviously.
P: Yeah
D: so the cochlear implants basically manipulates that system and transmit the sounds. Externally, through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain, that helps manipulate the sound for him.
P: So let’s talk about cochlear implants…
Dr. Hu: what it is basically is an electrode is placed inside the cochlea. That’s the snail shell portion of your ear, and that electrode. So let’s see– if you unravel the cochlea you roll it all out. It’s kind of like keys on a piano, it goes from low pitches to high pitches, we’re placing that electrode in there, and with a new technology, I actually am a cochlear implant specialist. I program, how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear. The electrode is stimulating the hearing nerve directly, bypassing that your lobe that outer ear is bypassing the middle ear bones and going straight to the nerve.
P: Wow, that’s amazing.
Dr. Hu: It’s pretty cool technology.
P: It’s super cool is there, a surgery to affix the outside portion? How does that work?
Dr. Hu: No, the surgery is strictly the electrode, as well as the internal processor. Basically a computer chip, if you say, I have an external processor that collects the sound like a microphone and the device takes that sound information acoustic to electrical transfers it to the inside and then play that out in there.
D: It’s just amazing. I mean he had that surgery, he had just turned one it was a day after his first birthday he went through a four and a half hour surgery. And then it was implanted or the sound was actually turned on at 13 months, and he he’s talking like any other three and a half year old and he’s only been hearing for two years.
P: That’s amazing. What was it like when they turned the sound on?
D: he was terrified. So it’s funny because you always see those videos of kids that are like smiling and laughing and our audiologist told us so like Danielle, just be aware. A lot of times, kids are terrified because they haven’t heard sound and 13, or 12 months or whatever they’re actually you know when they’re young on. And so our son was scared he cried and you know he’s in a world he has never known before.
P: Yeah
D: and he was completely silent before them. So, he was terrified at first and then it was amazing because as soon as he started hearing, he was like, looking every which way and it was just amazing to be able to finally say I love you because you think for the nine months you’re carrying your child every time you’re singing reading or saying I love you, they’re hearing that and just as a mom know that entire time they were never hearing and it was heart wrenching to actually hear that.
But now he doesn’t stop talking. It’s amazing how that works right totally amazing. So, so we think like cochlear implants. I mean one thing
P: that’s kind of amazing about that I imagine is that his hearing probably, I imagine won’t change, like other people like as you age, lose their hearing, but he’ll keep that defined hearing which is cool.
D: Yep. Yep.
P: And it doesn’t have any effect on balance or anything like that.
D: Nope. So they say that some kids can develop like headaches and stuff down the road. And some people experience vertigo but we haven’t seen anything with him he hasn’t, you know, hasn’t expressed any headaches i mean he’s three and a half so you know maybe he doesn’t know what those things are yet but we haven’t noticed any of those things with him.
Because the connexin 26 gene, it’s the most common thing it’s, it’s the easiest form of deafness to treat. There’s other forms of deafness that can cause other issues down the road like blindness or other things he tested negative for those things. So we were very fortunate that that was this, but basically this gene it’s weird because we don’t have any family deafness history in our family. So my husband actually has one part of this gene and I had the other one they were paired they caused it. And we never knew we had these genes. Yeah. So it’s just this perfect mix of, you know, opposites attract and here we go. But my oldest our oldest doesn’t have any of the genes, which is very rare. Yeah, you should have one or the other, he didn’t have any of them. Oh, very weird situation but it’s been a blessing because it brought everybody really close my mom moved home to be part of the experience and we all learned sign language and we’re trying to be involved with the deaf community as much as we can so it’s just been a very rewarding, albeit scary at first.
P: Yeah
D: you think, when your child is born deaf you think there’s, you never been to the community I grew up not knowing any deaf people so I was like oh my god my child is not going to be able to hear me. But the technology that we have today is amazing, Absolutely amazing.
P: In your time being an audiologist I bet you’ve seen like changes in technology.
Dr. Hu: Absolutely. Oh my gosh.
P: Can you tell us a little bit about that.
Dr. Hu: The hearing aids that I grew up with were analog hearing aids they were not digital at all. To adjust them you would take a little screwdriver in the back door of a hearing aid and turn up the AGC or turn up the volume here and turn up the bass and treble. Now the hearing aids are digital. They have a lot of channels, much like an equalizer on like a stereo system. We can adjust the bass we can adjust this pitch that pitch, all along the gamma, or the range of found. We have different bells and whistles on devices. My, for example, my processor now I can link up to my iPhone, and I can hear it directly in my ears with just, I get a direct auditory input from my phone and I’m listening to that person in two years. I have the advantage over someone with normal hearing, who’s holding a device, electrical sound coming out acoustical sound going into their ear and there might be environmental sounds going on everywhere. And the technology has definitely improved and think about it, we’ve got so many people in labs and doing research and engineering is doing this and that. It’s, whenever something is lacking, that creativity comes the ideas come so we want to take a quote unquote problem, and see what they can do to help.
P: That’s amazing…it is really lucky when you have an issue to have a common one, right? that’s already.
D: Absolutely
P: since like the fertility one was not common and they couldn’t figure it out like that, if you that’s like the perfect trade right that’s
Exactly how you’d want it to work out.
D: yup, absolutely
P: So one of the kids into.
D: so my six year old is really big into he’s just getting into the video games Minecraft, he got a Nintendo Switch for Christmas. So he loves those things. My youngest one is still really big into trucks fire trucks police cars, stuff like that. But they, they love being outdoors, they are outdoor kids if they could spend the whole day outside they would, but they just got a new puppy a couple months ago and they’re obsessed with their puppy. I wish they’d get along better, but they’re boys and so they fight and battle it out every day, but they’re typical boys, they love the dirt they love to get dirty. They love messes. So,
P: that sounds fun.
D: Yeah.
P: So if you could give advice to your younger self about this process of creating a family, what do you think you’d tell her.
D: Show yourself some grace. I think one of the things that my husband and I could have been better at, is you know he he tried to own a lot of the blame I tried to own a lot of the blame. And so for a long time we both tried to just show like shelter each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some grace because you have no idea what you’re what you’re going to go through in the future. But work as a team is there’s going to be things that you might not know you’re going to experience and my husband and I have been through a lot in the, you know, 10 years we’ve been married and they brought us together but that’s because we’ve had to work really hard to be a team, but we always said, we didn’t always do that. We had to work for it.
P: Yeah, that’s, that’s a that’s a useful lesson for younger you. And last time we spoke you mentioned something about what you did with the rest of your IVF embryos.
D: Yeah.
P: Why don’t you tell us about that.
D: Yeah, so, after my husband and I decided we’re done having children. We still had six embryos leftover that our fertility clinic would have just destroyed because of the fact that we carry this stuff gene. They basically consider them damaged, and so we knew that we didn’t want them destroyed because they were years of tears and, you know, all these hopes that we had for children. So we decided we..
P: sorry sorry pause for one second here. That’s kind of a crazy decision. It was to suggest like these are not like I’m surprised that they would do that and I would imagine there are many couples who would love to have those
D: absolutely we’ll find that out. Yeah. Because there’s a lot of humans that had the same kind of troubles we did. Yeah. And so we decided to, there was somebody that I knew that went through a private embryo adoption and I reached out to her and I said hey, how did you go about this. And she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption,
P: wait can you talk a little bit about that I’ve never heard the term embryo adoption.
D: Yeah, so it’s basically basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not. They’re not born right so you still have to go through the same process, there’s still other attorney involved there’s still paperwork that has to be filled out. We still had to sign over legal rights to these embryos as if there were children. We had to go through medical backgrounds family history backgrounds, we had to disclose a lot of personal information to whatever family we ended up going through as to the family that we chose. So, there’s still a lot of legality around it. It’s just not the same thing that people would picture as far as going into a facility looking to adopt children that are already born, that are in a system under foster care. These are tissues or embryos that are sitting frozen in a fertility clinic waiting to go through a procedure or not. So very different than what most people think is embryo, or an adoption process if you will.
P: Yeah. It’s hard to get accurate numbers on how common this practice is. According to the CDC, in 2018, approximately 1.9% of all infant births in the US, were conceived using assisted reproductive technology where the main technology is IVF. There’s a lot of variation across place and time, the numbers of IVF births vary a lot by states in part likely driven by the availability of fertility clinics. So for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people, but Pennsylvania has 15 fertility clinics and Illinois has 25. As of 2017, Wyoming and New Hampshire had no clinics. And according to a New York Times article for 2019 of the 2 million transfers of embryos to a woman’s uterus recorded by the CDC. Between the years 2000 and 2016 only 16,000 were donor embryos. but this number is growing too.
D: So what we did is we got in touch with this lady on his Facebook group and she was like okay we’ll put together a profile of what you’re looking for, give a little bit of history on yourselves. And so that’s exactly what we did is a Friday afternoon, it was like 12 o’clock in the afternoon. And we obviously the biggest thing for us is we wanted to be as open and honest as possible so we said hey you know, we do carry this gene, it does cause 25% deafness and these genes so six of them so the likelihood that one’s going to be deaf is very high, obviously.
So we knew that it was going to be hard some people because you know taking on the responsibility of having a deaf child it’s costly right it’s expensive it’s emotionally draining, it’s all of those things but it’s also very rewarding to have to find the right person. And we knew that we didn’t want somebody to have one of our children and then say, oh I This isn’t what I signed up for this is now a burden. Right. And so we want to be very careful on our selection,
P: Since this is a drawn out process it’s interesting to me that you decided to do all this work transfer the embryos what was that conversation like between you and your husband,
D: my husband and I? yeah. So we decided on doing this when our youngest was one. It was actually right after his first birthday, but we felt that we weren’t we were definitely don’t want to have more children, and those embryos had sat there for upwards of five years at that point. And so we wanted to give them the opportunity opportunity at life, if you will. And we knew that there were so many other families that were struggling like us and so we really wanted to bless somebody like that we have a very strong faith and so we wanted to give back if we could, but we did ask our family’s blessing for that, because it’s a big thing. I mean, my parents technically have grandchildren in different state.
P: Yeah.
D: Oh, it was a big responsibility to ask blessings for people and understand that if this worked for somebody that we were going to have biological children in somebody else’s care in different state. Yeah, we went through a counseling for it. We did go through an interview process with the family that we ended up choosing. And you know we did know exactly what we’re getting ourselves into, so it wasn’t. I know it sounds, it was a pretty quick process. And it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it. And I think it’s been so rewarding since because once we actually put this profile up within two hours we had 10 families that were interested.
P: That’s amazing.
D: In all of them knew that there was a possibility of them being deaf. Right. And the amazing thing about it so I always say that there’s a God wink right and so for us our God wink was the family that we chose the mother has a deaf education background.
P: Oh wow
D: and the husband’s a pastor. So, if anybody could handle
P: yeah
D: what was meant to be thrown at them, if any of these children were gonna be born. It was going to be this couple. They’re originally from the same area as us, they’re around the same age as us. And after we got off this interview, if you will, it was a two hour interview. And it felt like we were long lost friends.
P: I literally have goosebumps. that is so amazing. You couldn’t have picked a more perfect pair.
D: Yeah. And they ended up it ended up working, they ended up having twin daughters. When I have a twin sister so it’s really cool. I mean, we get updates we’re friends on Facebook. They send us they sent us a beautiful Christmas gift this year with their two Christmas ornament with their fingerprints on it as well and we send them birthday gifts and Christmas gifts and so some great relationship to open adoptions so if we ever want to meet in the future we can, if our boys want to meet their sisters in the future they can. That’s something we both agreed we wanted we didn’t want to close this with my kids didn’t know their sisters and vice versa. And so it’s been a really great blessing. It really has.
P: That is amazing. How old are the girls?
D: They turned a year in May, so they’re a little over a year and a half, and they share a birthday with my brother in law too so it’s kind of crazy,
P: oh my god that’s so connected Wow. And are you guys like physically far apart or can you get together easily or…
D: No they’re in Iowa, so I’m in Michigan they’re in Iowa, so they’re not very far apart, and they have a lot of family in the state of Michigan so I feel like they’re super close.
P: That’s amazing. Have you met them in person?
D: I have not. No. I feel like we have because I see him on Facebook all the time and it pictures all the time and it’s just crazy.
P: That’s amazing. It’s such a beautiful ending for this story because it you literally have given family to this to these other people which is just an amazing thing
D: and then the cool update on that is, she got naturally pregnant again. And so now we have four embryos left. And so it part of our agreement, we get those back my husband and I, and so we get to bless another family with
P: Wow,
D: and we, my husband and I decided that we want the other couple. The twins mother and father to be part of that process because now. Not only are my boys involved but now they have sisters so we’re gonna select another family and potentially a boss another family with kids.
P: That is amazing and the and the people who are going for embryo adoptions I’m assuming either can’t afford IVF and are having trouble getting pregnant and so this is kind of what they can do.
D: Yeah,
P: and embryo adoption is less it’s less expensive than IVF?
D: embryo adoption is typically a gift, they don’t typically pay for anything other than just the process of the implantation which is around $2,000 Plus it’s very inexpensive compared to IVF IVF is 10 to 12, 15 upwards dependent upon what you go through so this has been a gift and it’s just been a really great process great experience.
P: Oh my god, amazing. Thank you so much for telling us the story Danielle I’m gonna I’m gonna look out for that now because that’s such a cool thing to do. And thanks for thanks for sharing everything about the story
D: I really thank you for having me and letting me share it.
P: Thanks again to Dr. Michelle who for her insights about hearing aids and cochlear implants, and for giving me advice about how to get transcripts for the audio you’re hearing today. Doctor Hu has a Facebook group, where she regularly shares information about what she calls “conquering life with hearing loss”, called mama Hu hears, and I’ll put a link to that in the extended show notes, along with the audio transcript, all of which can be found at war stories from the Womb.com. Thanks to Danielle for sharing this incredible story, links to resources about many of the issues we discussed, can also be found in the war stories website. And thank you for listening. If you liked this episode, feel free to like and subscribe and leave a review. If you’d like to contribute your story to the podcast, go to the war stories website and sign up. We’ll be back soon with another amazing story about making the journey from person to parent.
Transcribed by https://otter.ai
this class of antibiotics is used because they’re effective on a broad range of bacteria which is unlike most modern antibiotics this is great in case like Danielle’s were they can’t pin down the source of the infection
score test to reveal the identity of the illness but we found out later that after he failed the newborn screen we went to another hearing facility and he actually failed together and I got a referral to Mott’s Children’s Hospital in Ann Arbor where it was determined that he was on ‚Äì and we had other genetic testing Don and find out that he had Connexus 26 is the most common Gene that causes deafness in children do you some context for this discussion according to the CDC about 1 and 500 infants are born with or develops hearing loss 50 to 60%
specific genetic mutation has caused deafness in Danielson
jb2
which plays an important role in the functioning of the tiny hairs that help the communicate sounds of the brain the mutation affects the production of this vital protein so you was actually born. Underwent cochlear implant surgery a year and he’s thriving you wouldn’t even know he is. He’s three and a half years old and he’s amazing wow that is a lot of a lot to take in at the beginning
because in the state of Michigan I don’t do any kind of surgery until the year old insurance companies won’t cover it we did start signing with him he does know basic sign language it is something that we want to continue doing with him because he has for the deaf Community without his ocular implants of course I’m here to is completely. He can’t even hear if he was next to a jet engine he can’t even hear that I mean that’s how is the music signs but he’s actually had speech therapy since he was 6 months old
Community I’m he did have hearing aids from when he was 2 months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they’re supposed to be here and so basically got all of his hearing mechanisms ready for that sound that was eventually going to be transmitted once he had that surgery so we did have hearing I’m up until his surgery
pediatric audiologist to learn about how is hearing loss A treated and how Cochlear implants work
thank you so much my name is dr. Michelle who I’m a pediatric audiologist in Southern California and I also happen to be hard of hearing or just myself and I utilize bilateral
what are the hearing aids doing in order to get a cochlear implant we have a very in-depth evaluation process if an invasive surgery we’re not going to do that just on anybody we want to evaluate the hearing see what kind of hearing loss that is the nature of it sometimes we take a look at the etiology aware that hearing loss came from because if he and Anatomy is not conducive for putting that electrode in there we don’t want to
elevations of the hearing we’re also seeing do hearing aids help sometimes they do sometimes you can give a person sound but it might not be clear kind of like when it’s a good movie theater if a volume was loud are you would think that that would be better but sometimes it would get distorted yeah we also thought we were picking what do they benefit from acoustical amplification as well as if it is a young child are they doing their diligence and teaching their child this device is we’re going to utilize this device for you if I can just ripping it off every day and they’re not you know placing boundaries around that and teaching them know I’ll be there shoes you need to wear shoes when you go outside either hearing is going to be here so that we can see if there’s any benefit from them if he’s not doing that why put your son through a surgery not going to be set up in a good environment to utilize the processor down there
and I’ve seen some of them go down the toilet by out the car window I’ve seen them being dropped in the Midwest
you don’t want to do those devices no different practices are in place for a reason but typically hearing aids are to see do they have benefit from any kind of information
does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or
do you have that helps transmit the sound so he wasn’t a real hair that’s a lawyer so he wasn’t born with that it was not a way to correct that obviously has basically manipulates that system and transmit The Sounds externally through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain that helps manipulate the song for hims
what it is basically is an electrode is placed inside the cochlea that’s the snail shell portion of your ear and that electrode so let’s see if you unravel the cochlea evil out is kind of like he’s on a piano it goes low pitches to high pitches replacing that electrode in there and with the new technology I actually am I program how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear the electrical stimulating the hearing nerve directly bypassing that your load the outer ear is bypassing the middle ear bones and going straight to the nerve amazing
is there a surgery to fix the outside portion like has that the surgery is the electrode as well as the internal processor basically a computer check my view say I have an external processor that collects the sound make a microphone and the device take that sound from acoustic to electrical transfer that to the inside and then plays it out in there so it’s just amazing I mean you had that surgery he had just turned one it was a day after his first birthday he went through a four and a half hour surgery and then it was implanted or the sun was actually turned on at 13 months and he’s talking like any other three and a half year olds and he’s only been here for 2 years that’s amazing you’re terrified so you it’s funny cuz you always see those videos of kids that are like smiling and laughing and are on audiologist told us so I didn’t yell just be aware a lot of times kids are terrified because they haven’t heard sound in 13 12 months or whatever they’re actually gone and so are some was scared he cried and you know he’s in a world has never known before yeah and he was completely silent before then so he was terrified at first and then it was amazing as as soon as you start hearing sounds he was like looking Every Which Way and it was just amazing to be able to finally say I love you because you think for the nine months you’re killing your child every time you’re singing her reading or saying I love you they’re sharing that and just as I know that entire time they were actually hear that but now he doesn’t start talking and it’s amazing how that works right. Totally amazing so so we think are Cochlear implants
he’s gearing probably imagined won’t change like other people as you age
it’ll have any effect on balance or anything like that
and some people experience vertigo but we haven’t seen anything with him he hasn’t do you know it hasn’t expressed any headaches and he’s two and a half so be done maybe he doesn’t know what those things are but we haven’t noticed any of those things with him because the connexin 26 Gene and it’s the most common thing is it’s the easiest form of deafness to treat about this other forms of Darkness that can cause other issues on the road like blindness or other things he tested negative for those things I’m so we were very fortunate that that was this but basically it’s weird because we don’t have any family definition history in our family so my husband actually has one part of the scene I had the other one they were. They caused it and we never knew we had those jeans yeah so it’s just as perfect mix of you know Opposites Attract in here we go by my oldest are all this doesn’t have any of the genes which is very rare the other he didn’t have any of them wow very weird situation but it’s been a blessing because I brought everybody really close my mom moved home to this to be part of the experience and we all learn sign language and we’re trying to be involved with the desk Community as much as we can so just going to be very rewarding I’ll be at scary at first
you never going to have the community I grew up not knowing that people so I was like my God my child be able to hear me but the technology that we have today is amazing actually amazing
audiologist I bet you’ve seen like changes in technology absolutely
the hearing aid that I grew up with were analog hearing and they were not digital at all to adjust them you would take a little screwdriver in the back door of a hearing aid and turn up turn up the volume here turn up the bass and treble now the hearing aids are digital they have a lot of channels much like an equalizer on like a stereo system we can adjust the bass we can adjust this pitch that pitch all along the Gamma or the range of sound we have different bells and whistles on devices my freaking for my processors now I can link up to my iPhone and I can hear it directly in my ears with just I get a direct auditory input from my phone and I’m listening to that person into ears but I have the advantage over someone with normal hearing who’s holding a device electrical sound coming out acoustical sound going into the ear and there might be environmental sounds
definitely improved. So many people in my eye
whenever something is lacking that creativity comes the ideas come so people want to take a problem and see what they can do to
is really lucky when you have an issue to have a comment on right
figure it out
Gerald really big into he’s just getting into the video games Minecraft he got a Nintendo switch for Christmas so he loves those things my youngest one is still really big in the trucks fire trucks police car sound like that but they did love being outdoors they are outdoor kids if they could spend the whole day outside they would but they just got a new puppy a couple months ago and they’re obsessed with her I was taking a long better but they’re boys and so they fight and battle it out everyday but they’re typical boys they love the dirt they love to get their asses so yeah so if you could give advice to younger self about this process of creating a family what do you think you could tell her show yourself some Grace I think one of the things that my husband and I could have been better off is you know he he tried to own a lot of the blame I try to own a lot of the blame and so for a long time and we will try to destroy each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some Grace cuz you have no idea what your future but work as a team if there’s going to be things that you might not know your inexperience and my husband I have been through a lot and that the 10 years we’ve been married and they brought us together but that’s because it had to work really hard to be a team but we always and we didn’t always do that we had to work for it yeah that’s that’s useful lesson for younger you and what time we spoke you mentioned something about what you did with the rest of your IVF
yeah so after my husband and I decided we’re done having children we still had 6 embryos left over that are fertility clinic would have destroyed because of the fact that we carry this stuff Jean they basically consider them damaged and so we knew that we’d let them destroy cuz they were years of tears and you know it is all these hopes that we had four children so we decided to you
these are not act like I’m surprised that they would do that and I would imagine they’re many couples who would love to have those absolutely will find that out ya had the same kind of troubles we did and so we decided to there was somebody there any other ones through private embryo adoption and it was up to her and I said hey how did you go about this and she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption
adoption yeah so it’s basically it’s basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not they’re not boring right so go to that the same process is still an attorney involved or so paperwork that has to be filled by we still had to sign over legal rights to these embryos as if they were children we headed to school to Medical I’m backgrounds Give me history backgrounds we had to disclose a lot of personal information to whatever family ended up going through a stir the family that we chose so it’s still a lot of legality around it it’s just not the same thing that people have picture as far as going into a facility looking to adopt her that already born that are in the system under foster care either tissues or embryos are sitting Frozen and fertility clinic waiting to go through procedure or not so very different than what most people think or an induction process it’s hard to get that route numbers on how common is practices according to the CDC in 2018 approximately 1.9% of all infant births in the US were conceived using assisted reproductive technology where the main technology is IVF there’s a lot of variation across place and time the numbers of IVF for it’s very loud by States and part likely driven by the availability of fertility clinics so for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people but Pennsylvania has 55 as of 2017 Wyoming in New Hampshire has no class and cream to a New York Times article of the two million transfers of embryos to a woman’s uterus recorded by the CDC between the years 2000 and 2016 only $16,000 donor embryos that this number is growing to so what we did is we got in touch with this lady on his Facebook group and she was like okay well put together a profile of what you’re looking for yourselves and so that’s exactly what we did is a Friday afternoon and we obviously the biggest thing for us as we want to be as open as possible so we said hey you know we do carry this team it does cost 25% deafness and these jeans so sick of the way clear that one’s going to be very high obviously so we knew that was going to do to her some people because you know taking on the responsibility
emotionally draining it’s all those things was also very rewarding to have to find the right person and we knew that we didn’t want somebody to have one of our children and then say
we want to be very careful on our selection
this is a drawn-out process it just seems to me that you decided to do all this work to transfer the embryos what what what was that conversation like
so we decide on doing this when our youngest was it was actually right after his first birthday but we felt that we were we were definitely don’t have any children and those emeralds had sat there for upwards of five years and so we wanted to give them the opportunity opportunity at life if you will and we knew that they were so many other families that we’re struggling in life we really wanted to blast somebody like that we have a very strong face and so we wanted to get back if we could but we did ask her family’s blessing for that because the big thing I mean my parents are we have grandchildren in different state though it was a big responsibility to ask blessings for people and understand that at this work for somebody that we were going to have biological children in somebody else’s care in different state yeah we went to a counseling for it we did go through an interview process for the family that we in choosing and you know we did know exactly what we’re getting ourselves into you so it wasn’t I don’t want to go there pretty quick process and it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it and I think it’s been so rewarding sense because once we actually put this profile up with in 2 hours at ten families that were interested that’s amazing and all of them knew that there’s a possibility of them being. And the amazing thing about it
has a death education background so that anybody could handle yeah
it was going to be there originally from the same areas us there around the same age as on us and after we got off this interview with UL is a 2-hour interview and if a long-lost friends I really have Goosebumps that is so amazing, more perfect pear and they end up in the end up working they end up having twin daughters are so it’s really cool I mean we get updates were friends on Facebook they sent us they sent us a beautiful Christmas gift this year with their to Christmas ornament with your fingerprints on it
Christmas gifts centers in great relationship is an open adoption so if we ever want to meet in the future we can if our boys when they meet their sisters in the future they can that’s something we both agree baby wanted we don’t want to close it so that my kids and no other sisters and vice versa and so it’s been a really great blessing it really has amazing how old are the girls they turned a year in May so they’re a little over a year now and I share a birthday with my brother-in-law she was kind of crazy oh my god wow
no there in Iowa so I’m in Michigan there in Iowa so they’re not very far apart and they have a lot of family in the state of Michigan so I feel like they’re super close that’s amazing I am not know I feel like we have cuz I seen on Facebook all the time and all the time and it’s just crazy that’s amazing
it didn’t you literally have given family to this other people which is an amazing thing and so now we have for embryos left and so it part of our agreement we get those back my husband and I and so we get to bless another family with me and we decided that we want the other couple the twins mother and father to be part of that process because now not only are my boys involved but now they have sisters or going to start another family and potentially it was another family with kids that is amazing people who are going for embryo adoption assuming either can’t afford IVF and are having trouble getting pregnant and so this is what they can do
biggest they don’t do anything other than just the process of the implantation which is around $2,000 cuz it’s very inexpensive compared to eyevea 10 to 12 15 uppers depend on the phone to go through so this is been a guest and it it’s just been a really great process great experience oh my God amazing thank you so much I want to look out for that now cuz that’s such a cool thing to do
it’s against dr. Michelle who for her insights about hearing aids and Cochlear implants for giving me advice about how to get transcripts for the art of your hearing today
what she calls
can be found at War stores in the room. Com thanks to Danielle forshee
Yahoo website and thank you for listening if you like this episode
you’re sweeter podcast
Hi welcome to the show. Can you tell us your name and where you’re from?
D: Yup, my name is Danielle and I am from Kalamazoo Michigan
P: Nice, and Danielle, how many kids do you have?
D: I have two kids, book boys ages, 6 and 3.
P: so young….before you got pregnant what did you think pregnancy would be like?
D: I thought it’d be really easy to get pregnant my older sister got pregnant very easily, very young, as did my mother.
So I assumed that as soon as my husband and I were ready to get pregnant it would happen basically overnight when we wanted it to happen and so I just assumed when we already it would happen.
P: Did you think pregnancy would be easy? Did you have an idea of what that process will be like?
D: Yeah, I’ve heard stories about being really easy for some people, being really hard for others I pictured that maybe I would kind of fall somewhere in between. I felt like I was in pretty decent shape; that if I kept working out that it would be fine for me but you know my mom had some twins that were born very early so I knew that there was a likelihood that I might have some issues but I didn’t really know what to expect to be honest.
P: Yeah, was it easy to get pregnant that first time?
D: It wasn’t. It wasn’t easy at all. It took us quite a while to get pregnant.
P: How long did you…like how long was the process and did you end up turning to doctor’s to be involved? Or, how did that go?
D: Yeah, so we got married in May of 2011 and we started trying almost immediately and basically determined pretty quickly that it wasn’t going to happen overnight. We started determining that we were going to have to have somebody help us you know obviously fertility clinic. We reached out to…almost… I think it was like in the fall that year. We always assume that you wait 6 months you try if that doesn’t work and there might be something else going on so we went to an open house that they had one evening and sat down kind of learned, you know, what are some of the causes you know what it could be and we got a free consultation with them and really go into what could be causing it and really found out what our next steps would be which included a lot of testing.
P: Yeah, the testing is not…not as fun as you might think it would be.
D: No yeah I mean it wasn’t just myself that went through it, it was my husband. So lots of pokes and prodded and lots of tests and x-rays blood work you know a lot of uncomfortable tests, very non discrete tests, you know, invasive
P: totally
D: But a lot of necessary tests to really dive into the nitty-gritty about what’s going on. My husband is 8 years older, so they thought maybe something to do with age. I was younger so there really wasn’t a lot of concern as to what was causing issues and it took them quite a while to figure it out. They thought it could be related to a hernia my husband had so he ended up having hernia surgery. It didn’t really help anything. They put us on medications. They did, you know, different procedures. I mean there were so many trial and error that they tried before they really determine what the cause was.
P: So it sounds like they figured out what the cause was.
D: It was yeah they determined that my spouse had a very low sperm count and basically was disappearing before their eyes and they didn’t really know why. They said it could have been caused from injury from when he was younger he was really active in sports so it could have been one, you know, injury to the groin that maybe he didn’t even know could have had the impact they had on him today… but a normal person has a 20,000 every time they ejaculate and he was like 1400 so very very low.
P: Oh wow
it sounds like Danielle’s partner had a semen analysis and his sperm count came back low. To give some context to the numbers according to the Mayo Clinic normal sperm densities range from 15 million to greater than 200 million sperm per millimeter of semen. You are considered to have a low sperm count if you have less than 15 million sperm per milliliter, or less than 39 million sperm per total ejaculate.
D: and so basically their course of action was to freeze some right away to try to retain as much as they could before they were gone.
P: Yeah, yeah that’s a little scary.
D: Yeah
P: How did he take that? Was he ok or it was upsetting or…
D: No he was devastated because they called me to tell the news because I was basically the contact I had to deliver the news with him over the phone and it… I mean it… I could hear the wind just kind of leave his body and it was like a punch to the gut…and I remember him telling me you know you can leave me if you want I know that you really want kids cuz he knew that was me really hard for us to have kids and I told him like I made this commitment like we’ll figure it out but he felt that he was going to hold us back from having a family that we wanted and it was just devastating because I couldn’t be there…I couldn’t tell him in person..I had sent him a message and just said, hey, we got the results, we can talk about it later. And he was like, no, I want them now… so he was the one who wanted the news…it was just a really crappy way of delivering it to him
P: yeah it’s super hard. So we had trouble getting pregnant too and the issue was in my body…you always imagined that you’d be able to have kids and so it is kind of a shocking blow to find that, oh, there’s this thing that’s been wrong that I had no idea was going on and sort of, here we are so I’m very sympathetic
D: He just felt like he’s a failure…you know, he thinks it’s so easy to to be a parent. You know he saw all his friends and family have no problems and then for him to feel like he was holding us back—it was just devastating for him
P: Yeah, that’s super hard…although, spoiler alert, it does work out
D: Yeah, it does
P: okay so so how did you guys get pregnant?
D: So in a non non way that we thought was going to happen. So we underwent a couple rounds of fertility treatment starting with, um, basically we went through the to have IVF done, did IVF
P: Okay, Danielle talks about IVF without much detail it is a physically demanding process and can be an expensive one, too. First you’ll get fertility drugs that contain FSH follicle-stimulating hormone which tell your body to produce more than just one egg per month. During this step doctors use ultrasound and bloodwork to check on your ovaries and hormone levels. The next step is egg retrieval which is likely harder than it sounds. You get an injection the day before the retrieval to make the eggs mature more quickly and the actual retrieval occurs in an outpatient surgery in which a thin needle is put into the ovaries to suction out the eggs. Your partner provides a sperm sample and then the two meet; either egg and sperm enjoy some privacy in a petri dish or the doctor can inject sperm into the egg. In the next 3 to 5 days after fertilization the resulting embryos are graded. Doctors look at the development of the embryo and consider both the cells that will form the fetus and the cells that will form the placenta. Next the woman has to take another medication to prepare the lining of the uterus to receive an embryo and finally the embryos with the highest grades are implanted in the woman’s uterus through another in-office procedure and lastly if fingers crossed all goes well a pregnancy test returns a positive result. One full cycle takes 3 weeks and according to the New York Times the average cost in the US in 2019 was between 12000 and $17,000 not including medication. To someone who has never been through it it sounds like a full-on campaign.
D: Did the procedure; didn’t work; couple months later we did FET. in November of the same year.
P: what’s what’s FET?
D: So it’s frozen embryo transfer so it’s basically IVF but we don’t have to go through all the shots all over the basically growing the embryo, basically the really uncomfortable things we have to go through which is basically transferring everything which was so much easier
P: yeah
D: So we went through that in November we did get pregnant and then it ended in a miscarriage, um, right before Christmas so devastated again, but, and I’m fast forwarding because that all led up to our second pregnancy. Our first pregnancy I fast-forwarded. Our first pregnancy we were getting ready to do IUI, which is not even to the next step of IVF, basically a very minimal form of basically fertility treatment.
P: As Danielle suggests, an IUI or intrauterine insemination is a cakewalk compared to IVF. Basically your partner provides a semen sample and the doctor takes the sperm and puts it in her uterus when you’re ovulating it’s a 10-minute procedure it happens in the office it’s completely painless
D: and was getting, I went in the day before I got a call to do blood work you have to go through all the proper steps make sure you’re not pregnant and make sure everything looks good and so we were ready to do IUI the following week and I got a call on Friday morning from the fertility clinic and I was expecting them to say “hey, bloodwork looks good, this is your appointment for this day, this time”. And she was like, “hey, we got your blood results back and you’re pregnant” and I was like, excuse me? Because we had tried for 2 years at this point, naturally, not trying to prevent anything….
P: Yeah
D: And I was like, “excuse me” and she said “you’re pregnant” and I was like, “Danielle Jones is a very common name. Are you sure you have the right one? Do you want to verify birthday or address, or anything?
P: Yeah,
D: And she was like, “no, you’re…this is the right one.” and I was like oh how can that be? We don’t know. And I remember hurrying home I just got into work that day and I hurried home and told my husband he was asleep at the time he was working second shift so of course he had just been asleep for a couple hours and told him so we end up getting pregnant in between treatment the first time with our oldest and the second time which had already kind of alluded to we went through a couple rounds of fertility treatment which ended in a miscarriage and then that was mid-November that the miscarriage went through then we naturally got pregnant in December so spent thousands of dollars for fertility treatment only to end up getting pregnant naturally twice
P: Wow…I mean that’s sort of the tricky thing with…when you are in the fertility gauntlet is there’s a limit to how much they understand so once you know right they think it’s this sperm issue, but obviously that’s not it since you got pregnant that way, so it’s hard to know really what to pinpoint and ah, ah, amazing. So…and what was the pregnancy like?
D: The first one with my oldest was horrible. They say, you know that there’s such a thing as morning sickness– mine was an all-day sickness and I was sick non-stop for 18 weeks and by the time I found out I was pregnant I was 7 weeks and it was just awful but after the 18 weeks it was smooth sailing. The pregnancy was completely normal. He came…he was 2 weeks early but he was still full term he was still 8 lb. My husband was a 10 lb baby so I’m really glad I wasn’t late.
P: No kidding!
D: yeah my second pregnancy I didn’t have any morning sickness that was really weird so completely opposite they say he was born kind of right on time but we had some complications right away he was born pretty sick he had pneumonia when he was born so he was thrust right into NICU almost immediately for over 2 weeks
P: wait, what does that mean? That means right when he was born he had pneumonia?
D: They said he had pneumonia, yeah he was born with pneumonia. I was actually really sick leading up to giving birth to him and so they said somehow it was transferred to him right when he was born and so he got pneumonia within hours of being born and they weren’t sure what it was right away they actually tested them for meningitis; they did a spinal tap on him within a couple hours of being born and you know they didn’t they weren’t sure he was on oxygen he had a feeding tube it was an awful experience
P: A little bit of context here, pneumonia is one of the leading causes of neonatal respiratory distress and is most commonly acquired at birth respiratory distress effects up to 7% of term newborns and represents one of the most common reasons for admission to the neonatal Intensive Care Unit, the NICU
D: It was one of those things where you know the first one was born healthy you don’t think anything’s wrong and then your second child basically ripped out of your arms not breathing by himself and they don’t know what’s wrong with him and you know fortunately he ended up being okay but it was a very scary situation completely opposite, I mean we were able to take my first son home within a day, and here my second one is in NICU for over 2 weeks then splitting time between being home with my three-and-a-half-year-old and being at the hospital with my newborn was really difficult
P: yeah that sounds difficult and totally scary, God It’s such a…it must have been so unexpected since when he was born he probably passed the Apgar and they thought he was fine…
D: Yeah…
P: And I’m sure waiting to figure out that it was pneumonia is a is a scary…meningitis is a terrifying thing to hear, right?
D: Yeah, and he passed one hearing screen on one side and not the other and so they just basically constituted that its fluid in the ears but obviously later down we find out there is something completely wrong with his hearing later on so it was just a very life-altering experience overall and really changed our lives for…. forever but really in a good way I’ll say
P: Tell us the story of him getting out of the NICU, like how does that happen? You are going to visit and they are taking care of him, they figure out it’s pneumonia…
D: Yup. So they figure out it’s pneumonia and they basically have to stabilize him and so it’s just a waiting game. We had to make sure his oxygen levels were going to be at a certain spot where they had to be without the breathing tube. so he was in basically the I don’t even know what they call it, the breathing apparatus where he know he’s in there he has a breathing tube, but his oxygen just kept slipping so he wasn’t breathing by himself he had fluid in his lungs and so basically was just trying to monitor that…because we couldn’t hold him for several days after he was born…so that was really hard..
P: can they give him…that’s super hard. Can they give him antibiotics, or anything? Like, what do you do for pneumonia?
D: They did end up giving him antibiotics. They gave him Gentamicin which is a very common antibiotic do they give children that has any kind of respiratory distress pneumonia stuff like that and so at first it wasn’t working so they weren’t sure again if this was a pneumonia, I mean cuz he had another unknown infection and never identified what the other infection was like he…it got really scary at one point we didn’t know if we were to bring him home because he was so weak so frail he wasn’t eating and you know I I just remember looking at him and he was just hooked up to all these monitors and machines and every time they would take him off the breathing tube and the food tube, everything will just drop and nurses would rush in and so it was really stressful I mean my husband I basically lived apart for 2 and 1/2 weeks but eventually he got better, the gentamicin cleared everything up he did Pat he did fail his hearing screen before he left again but they just kept assuring us you know it’s just fluid in his ears, it’ll be fine and you know we didn’t end up being fine we did find out there’s another issue altogether but he did end up coming home and he was healthy from there on out
P: So what’s the other issue altogether?
D: He was born deaf.
P: oh wow
D: Yup. So at first he had passed one one side of his hearing screen and so at first we’re being told that the gentamicin actually caused him to go deaf. Because if gentamicin isn’t monitored correctly it can cause deafness in children
You might wonder…why would they use antibiotics that can potentially cause deafness? This class of antibiotics is used because they are effective on a broad range of bacteria, unlike most modern antibiotics, which is great in a case like Danielle’s where they can’t pin down the source of the infection. This is particularly useful in newborns who can die from infection in one to two days, before tests could reveal the identity of the illness.
But drugs in this class can induce hearing loss. New research on mice suggests this is because inflammation in the body allows the sensory hairs of the inner ear, to take in more of the drug, making them more susceptible to the toxic elements of antibiotics
D: But we found out later that after he failed the newborn screen, we went to another hearing facility and he actually failed that one altogether, and then got a referral to Motts Children’s Hospital in Ann Arbor, where it was determined that he was born deaf and we had other genetic testing done and found out that he had connexin 26 which is the most common gene that causes deafness in children
P: to give some context for this discussion. According to the CDC, about one in 500 infants is born with or develops hearing loss. 50 to 60% of hearing loss of babies is due to genetic causes one specific genetic mutation has caused deafness and Danielle’s son in his case is a mutation in the gene known as GJB2 which contains instructions for a protein called Connexin 26, which plays an important role in the functioning of the tiny hairs or cilia, it helps to communicate sound to the brain, the mutation affects the production of this vital protein.
D: So he was actually born deaf underwent cochlear implant surgery, at a year and he’s thriving you wouldn’t even know he’s deaf, he’s three and a half years old and he’s amazing.
P: Wow. That is a lot of a lot to take in and the beginning. Did you guys sign with him before the implants or like how did you communicate?
D: Yep. So, because in the state of Michigan, they don’t do any kind of surgery until a year old– insurance companies won’t cover it. We did start signing with him he does know basic sign language, it is something that we want to continue doing with him because he is part of the deaf community without his cochlear implants, of course, he is completely deaf. He can’t even hear if he was next to a jet engine. He can’t even hear that I mean that’s how deaf he is. But we do sign with him he knows a lot of the basic signs, but he’s actually had speech therapy since he was six months old. He has been very entwined with the hearing community. He did have hearing aids. From when he was two months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they were supposed to be hearing so basically we got all of his hearing mechanisms, ready for that sound that was eventually going to be transmitted once he had that surgery. So we did have hearing aids. up until his surgery.
P: I checked in with a pediatric audiologist to learn about how hearing loss is treated and how cochlear implants work. Hi, thanks so much for coming on the show. Can you introduce yourself for us.
Dr. Hu: Thank you so much. My name is Dr. Michelle Hu I’m a pediatric audiologist in Southern California. And I also happen to be hard of hearing or deaf myself and I utilize bilateral cochlear implants.
P: Oh wow. Let’s talk for a second about Danielle’s son, what are the hearing aids doing.
Dr. Hu: So, in order to get a cochlear implant we have a very in depth evaluation process. It’s an invasive surgery, we’re not going to do that just on anybody. We want to evaluate the hearing, see what kind of hearing loss, it is the nature of it. Sometimes we take a look at the etiology of it, or where that hearing loss came from, because if the anatomy is not conducive for putting that electrode in there. We don’t want to put them through that. So, we’re doing MRIs we’re doing evaluations of the hearing. We’re also seeing do hearing aids help. Sometimes they do sometimes they don’t. You can give a person sound, but it might not be clear, kind of like when we used to go to movie theaters if the volume was louder. You would think that that would be better but sometimes it would get distorted.
P: Yeah…
Dr. Hu: we also were taking a look, do they benefit from acoustical amplification, as well as if it’s a young child. Are they are doing their diligence and teaching their child, this device is part of it, we’re gonna utilize this device for you. If that kid is just ripping it off every day and they’re not, you know, placing boundaries around that, and teaching them know, like this, these are shoes you need to wear shoes when you go outside. These are hearing aids you’re gonna wear hearing aids, so that we can see if there’s any benefit from them. If he’s not doing that. Why put your son through surgery, if he’s not going to be set up in a good environment to utilize the processes on there. That makes them very expensive surgery and a very expensive processor. And I’ve seen some of them go down the toilet. I’ve seen them fly out the car window, I’ve seen them being dropped I grew up in the Midwest. In, heating vents. So you don’t want to lose those devices, you know, so, all of these different practices are in place for a reason. But typically hearing aids are to see do they benefit from any kind of acoustical information.
P: I don’t know that much about deafness, does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or how does that work?
D: yeah so basically he didn’t have the cilia and the ears that we have that helps transmit the sound.
P: the cilia are the little hairs?
D: Yeah. Yep, so he wasn’t born with that. And so there’s not a way to correct that obviously.
P: Yeah
D: so the cochlear implants basically manipulates that system and transmit the sounds. Externally, through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain, that helps manipulate the sound for him.
P: So let’s talk about cochlear implants…
Dr. Hu: what it is basically is an electrode is placed inside the cochlea. That’s the snail shell portion of your ear, and that electrode. So let’s see– if you unravel the cochlea you roll it all out. It’s kind of like keys on a piano, it goes from low pitches to high pitches, we’re placing that electrode in there, and with a new technology, I actually am a cochlear implant specialist. I program, how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear. The electrode is stimulating the hearing nerve directly, bypassing that your lobe that outer ear is bypassing the middle ear bones and going straight to the nerve.
P: Wow, that’s amazing.
Dr. Hu: It’s pretty cool technology.
P: It’s super cool is there, a surgery to affix the outside portion? How does that work?
Dr. Hu: No, the surgery is strictly the electrode, as well as the internal processor. Basically a computer chip, if you say, I have an external processor that collects the sound like a microphone and the device takes that sound information acoustic to electrical transfers it to the inside and then play that out in there.
D: It’s just amazing. I mean he had that surgery, he had just turned one it was a day after his first birthday he went through a four and a half hour surgery. And then it was implanted or the sound was actually turned on at 13 months, and he he’s talking like any other three and a half year old and he’s only been hearing for two years.
P: That’s amazing. What was it like when they turned the sound on?
D: he was terrified. So it’s funny because you always see those videos of kids that are like smiling and laughing and our audiologist told us so like Danielle, just be aware. A lot of times, kids are terrified because they haven’t heard sound and 13, or 12 months or whatever they’re actually you know when they’re young on. And so our son was scared he cried and you know he’s in a world he has never known before.
P: Yeah
D: and he was completely silent before them. So, he was terrified at first and then it was amazing because as soon as he started hearing, he was like, looking every which way and it was just amazing to be able to finally say I love you because you think for the nine months you’re carrying your child every time you’re singing reading or saying I love you, they’re hearing that and just as a mom know that entire time they were never hearing and it was heart wrenching to actually hear that.
But now he doesn’t stop talking. It’s amazing how that works right totally amazing. So, so we think like cochlear implants. I mean one thing
P: that’s kind of amazing about that I imagine is that his hearing probably, I imagine won’t change, like other people like as you age, lose their hearing, but he’ll keep that defined hearing which is cool.
D: Yep. Yep.
P: And it doesn’t have any effect on balance or anything like that.
D: Nope. So they say that some kids can develop like headaches and stuff down the road. And some people experience vertigo but we haven’t seen anything with him he hasn’t, you know, hasn’t expressed any headaches i mean he’s three and a half so you know maybe he doesn’t know what those things are yet but we haven’t noticed any of those things with him.
Because the connexin 26 gene, it’s the most common thing it’s, it’s the easiest form of deafness to treat. There’s other forms of deafness that can cause other issues down the road like blindness or other things he tested negative for those things. So we were very fortunate that that was this, but basically this gene it’s weird because we don’t have any family deafness history in our family. So my husband actually has one part of this gene and I had the other one they were paired they caused it. And we never knew we had these genes. Yeah. So it’s just this perfect mix of, you know, opposites attract and here we go. But my oldest our oldest doesn’t have any of the genes, which is very rare. Yeah, you should have one or the other, he didn’t have any of them. Oh, very weird situation but it’s been a blessing because it brought everybody really close my mom moved home to be part of the experience and we all learned sign language and we’re trying to be involved with the deaf community as much as we can so it’s just been a very rewarding, albeit scary at first.
P: Yeah
D: you think, when your child is born deaf you think there’s, you never been to the community I grew up not knowing any deaf people so I was like oh my god my child is not going to be able to hear me. But the technology that we have today is amazing, Absolutely amazing.
P: In your time being an audiologist I bet you’ve seen like changes in technology.
Dr. Hu: Absolutely. Oh my gosh.
P: Can you tell us a little bit about that.
Dr. Hu: The hearing aids that I grew up with were analog hearing aids they were not digital at all. To adjust them you would take a little screwdriver in the back door of a hearing aid and turn up the AGC or turn up the volume here and turn up the bass and treble. Now the hearing aids are digital. They have a lot of channels, much like an equalizer on like a stereo system. We can adjust the bass we can adjust this pitch that pitch, all along the gamma, or the range of found. We have different bells and whistles on devices. My, for example, my processor now I can link up to my iPhone, and I can hear it directly in my ears with just, I get a direct auditory input from my phone and I’m listening to that person in two years. I have the advantage over someone with normal hearing, who’s holding a device, electrical sound coming out acoustical sound going into their ear and there might be environmental sounds going on everywhere. And the technology has definitely improved and think about it, we’ve got so many people in labs and doing research and engineering is doing this and that. It’s, whenever something is lacking, that creativity comes the ideas come so we want to take a quote unquote problem, and see what they can do to help.
P: That’s amazing…it is really lucky when you have an issue to have a common one, right? that’s already.
D: Absolutely
P: since like the fertility one was not common and they couldn’t figure it out like that, if you that’s like the perfect trade right that’s
Exactly how you’d want it to work out.
D: yup, absolutely
P: So one of the kids into.
D: so my six year old is really big into he’s just getting into the video games Minecraft, he got a Nintendo Switch for Christmas. So he loves those things. My youngest one is still really big into trucks fire trucks police cars, stuff like that. But they, they love being outdoors, they are outdoor kids if they could spend the whole day outside they would, but they just got a new puppy a couple months ago and they’re obsessed with their puppy. I wish they’d get along better, but they’re boys and so they fight and battle it out every day, but they’re typical boys, they love the dirt they love to get dirty. They love messes. So,
P: that sounds fun.
D: Yeah.
P: So if you could give advice to your younger self about this process of creating a family, what do you think you’d tell her.
D: Show yourself some grace. I think one of the things that my husband and I could have been better at, is you know he he tried to own a lot of the blame I tried to own a lot of the blame. And so for a long time we both tried to just show like shelter each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some grace because you have no idea what you’re what you’re going to go through in the future. But work as a team is there’s going to be things that you might not know you’re going to experience and my husband and I have been through a lot in the, you know, 10 years we’ve been married and they brought us together but that’s because we’ve had to work really hard to be a team, but we always said, we didn’t always do that. We had to work for it.
P: Yeah, that’s, that’s a that’s a useful lesson for younger you. And last time we spoke you mentioned something about what you did with the rest of your IVF embryos.
D: Yeah.
P: Why don’t you tell us about that.
D: Yeah, so, after my husband and I decided we’re done having children. We still had six embryos leftover that our fertility clinic would have just destroyed because of the fact that we carry this stuff gene. They basically consider them damaged, and so we knew that we didn’t want them destroyed because they were years of tears and, you know, all these hopes that we had for children. So we decided we..
P: sorry sorry pause for one second here. That’s kind of a crazy decision. It was to suggest like these are not like I’m surprised that they would do that and I would imagine there are many couples who would love to have those
D: absolutely we’ll find that out. Yeah. Because there’s a lot of humans that had the same kind of troubles we did. Yeah. And so we decided to, there was somebody that I knew that went through a private embryo adoption and I reached out to her and I said hey, how did you go about this. And she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption,
P: wait can you talk a little bit about that I’ve never heard the term embryo adoption.
D: Yeah, so it’s basically basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not. They’re not born right so you still have to go through the same process, there’s still other attorney involved there’s still paperwork that has to be filled out. We still had to sign over legal rights to these embryos as if there were children. We had to go through medical backgrounds family history backgrounds, we had to disclose a lot of personal information to whatever family we ended up going through as to the family that we chose. So, there’s still a lot of legality around it. It’s just not the same thing that people would picture as far as going into a facility looking to adopt children that are already born, that are in a system under foster care. These are tissues or embryos that are sitting frozen in a fertility clinic waiting to go through a procedure or not. So very different than what most people think is embryo, or an adoption process if you will.
P: Yeah. It’s hard to get accurate numbers on how common this practice is. According to the CDC, in 2018, approximately 1.9% of all infant births in the US, were conceived using assisted reproductive technology where the main technology is IVF. There’s a lot of variation across place and time, the numbers of IVF births vary a lot by states in part likely driven by the availability of fertility clinics. So for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people, but Pennsylvania has 15 fertility clinics and Illinois has 25. As of 2017, Wyoming and New Hampshire had no clinics. And according to a New York Times article for 2019 of the 2 million transfers of embryos to a woman’s uterus recorded by the CDC. Between the years 2000 and 2016 only 16,000 were donor embryos. but this number is growing too.
D: So what we did is we got in touch with this lady on his Facebook group and she was like okay we’ll put together a profile of what you’re looking for, give a little bit of history on yourselves. And so that’s exactly what we did is a Friday afternoon, it was like 12 o’clock in the afternoon. And we obviously the biggest thing for us is we wanted to be as open and honest as possible so we said hey you know, we do carry this gene, it does cause 25% deafness and these genes so six of them so the likelihood that one’s going to be deaf is very high, obviously.
So we knew that it was going to be hard some people because you know taking on the responsibility of having a deaf child it’s costly right it’s expensive it’s emotionally draining, it’s all of those things but it’s also very rewarding to have to find the right person. And we knew that we didn’t want somebody to have one of our children and then say, oh I This isn’t what I signed up for this is now a burden. Right. And so we want to be very careful on our selection,
P: Since this is a drawn out process it’s interesting to me that you decided to do all this work transfer the embryos what was that conversation like between you and your husband,
D: my husband and I? yeah. So we decided on doing this when our youngest was one. It was actually right after his first birthday, but we felt that we weren’t we were definitely don’t want to have more children, and those embryos had sat there for upwards of five years at that point. And so we wanted to give them the opportunity opportunity at life, if you will. And we knew that there were so many other families that were struggling like us and so we really wanted to bless somebody like that we have a very strong faith and so we wanted to give back if we could, but we did ask our family’s blessing for that, because it’s a big thing. I mean, my parents technically have grandchildren in different state.
P: Yeah.
D: Oh, it was a big responsibility to ask blessings for people and understand that if this worked for somebody that we were going to have biological children in somebody else’s care in different state. Yeah, we went through a counseling for it. We did go through an interview process with the family that we ended up choosing. And you know we did know exactly what we’re getting ourselves into, so it wasn’t. I know it sounds, it was a pretty quick process. And it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it. And I think it’s been so rewarding since because once we actually put this profile up within two hours we had 10 families that were interested.
P: That’s amazing.
D: In all of them knew that there was a possibility of them being deaf. Right. And the amazing thing about it so I always say that there’s a God wink right and so for us our God wink was the family that we chose the mother has a deaf education background.
P: Oh wow
D: and the husband’s a pastor. So, if anybody could handle
P: yeah
D: what was meant to be thrown at them, if any of these children were gonna be born. It was going to be this couple. They’re originally from the same area as us, they’re around the same age as us. And after we got off this interview, if you will, it was a two hour interview. And it felt like we were long lost friends.
P: I literally have goosebumps. that is so amazing. You couldn’t have picked a more perfect pair.
D: Yeah. And they ended up it ended up working, they ended up having twin daughters. When I have a twin sister so it’s really cool. I mean, we get updates we’re friends on Facebook. They send us they sent us a beautiful Christmas gift this year with their two Christmas ornament with their fingerprints on it as well and we send them birthday gifts and Christmas gifts and so some great relationship to open adoptions so if we ever want to meet in the future we can, if our boys want to meet their sisters in the future they can. That’s something we both agreed we wanted we didn’t want to close this with my kids didn’t know their sisters and vice versa. And so it’s been a really great blessing. It really has.
P: That is amazing. How old are the girls?
D: They turned a year in May, so they’re a little over a year and a half, and they share a birthday with my brother in law too so it’s kind of crazy,
P: oh my god that’s so connected Wow. And are you guys like physically far apart or can you get together easily or…
D: No they’re in Iowa, so I’m in Michigan they’re in Iowa, so they’re not very far apart, and they have a lot of family in the state of Michigan so I feel like they’re super close.
P: That’s amazing. Have you met them in person?
D: I have not. No. I feel like we have because I see him on Facebook all the time and it pictures all the time and it’s just crazy.
P: That’s amazing. It’s such a beautiful ending for this story because it you literally have given family to this to these other people which is just an amazing thing
D: and then the cool update on that is, she got naturally pregnant again. And so now we have four embryos left. And so it part of our agreement, we get those back my husband and I, and so we get to bless another family with
P: Wow,
D: and we, my husband and I decided that we want the other couple. The twins mother and father to be part of that process because now. Not only are my boys involved but now they have sisters so we’re gonna select another family and potentially a boss another family with kids.
P: That is amazing and the and the people who are going for embryo adoptions I’m assuming either can’t afford IVF and are having trouble getting pregnant and so this is kind of what they can do.
D: Yeah,
P: and embryo adoption is less it’s less expensive than IVF?
D: embryo adoption is typically a gift, they don’t typically pay for anything other than just the process of the implantation which is around $2,000 Plus it’s very inexpensive compared to IVF IVF is 10 to 12, 15 upwards dependent upon what you go through so this has been a gift and it’s just been a really great process great experience.
P: Oh my god, amazing. Thank you so much for telling us the story Danielle I’m gonna I’m gonna look out for that now because that’s such a cool thing to do. And thanks for thanks for sharing everything about the story
D: I really thank you for having me and letting me share it.
P: Thanks again to Dr. Michelle who for her insights about hearing aids and cochlear implants, and for giving me advice about how to get transcripts for the audio you’re hearing today. Doctor Hu has a Facebook group, where she regularly shares information about what she calls “conquering life with hearing loss”, called mama Hu hears, and I’ll put a link to that in the extended show notes, along with the audio transcript, all of which can be found at war stories from the Womb.com. Thanks to Danielle for sharing this incredible story, links to resources about many of the issues we discussed, can also be found in the war stories website. And thank you for listening. If you liked this episode, feel free to like and subscribe and leave a review. If you’d like to contribute your story to the podcast, go to the war stories website and sign up. We’ll be back soon with another amazing story about making the journey from person to parent.
Transcribed by https://otter.ai
this class of antibiotics is used because they’re effective on a broad range of bacteria which is unlike most modern antibiotics this is great in case like Danielle’s were they can’t pin down the source of the infection
score test to reveal the identity of the illness but we found out later that after he failed the newborn screen we went to another hearing facility and he actually failed together and I got a referral to Mott’s Children’s Hospital in Ann Arbor where it was determined that he was on ‚Äì and we had other genetic testing Don and find out that he had Connexus 26 is the most common Gene that causes deafness in children do you some context for this discussion according to the CDC about 1 and 500 infants are born with or develops hearing loss 50 to 60%
specific genetic mutation has caused deafness in Danielson
jb2
which plays an important role in the functioning of the tiny hairs that help the communicate sounds of the brain the mutation affects the production of this vital protein so you was actually born. Underwent cochlear implant surgery a year and he’s thriving you wouldn’t even know he is. He’s three and a half years old and he’s amazing wow that is a lot of a lot to take in at the beginning
because in the state of Michigan I don’t do any kind of surgery until the year old insurance companies won’t cover it we did start signing with him he does know basic sign language it is something that we want to continue doing with him because he has for the deaf Community without his ocular implants of course I’m here to is completely. He can’t even hear if he was next to a jet engine he can’t even hear that I mean that’s how is the music signs but he’s actually had speech therapy since he was 6 months old
Community I’m he did have hearing aids from when he was 2 months old and on and even though there’s not much that they probably did for them they still basically told his hearing that they’re supposed to be here and so basically got all of his hearing mechanisms ready for that sound that was eventually going to be transmitted once he had that surgery so we did have hearing I’m up until his surgery
pediatric audiologist to learn about how is hearing loss A treated and how Cochlear implants work
thank you so much my name is dr. Michelle who I’m a pediatric audiologist in Southern California and I also happen to be hard of hearing or just myself and I utilize bilateral
what are the hearing aids doing in order to get a cochlear implant we have a very in-depth evaluation process if an invasive surgery we’re not going to do that just on anybody we want to evaluate the hearing see what kind of hearing loss that is the nature of it sometimes we take a look at the etiology aware that hearing loss came from because if he and Anatomy is not conducive for putting that electrode in there we don’t want to
elevations of the hearing we’re also seeing do hearing aids help sometimes they do sometimes you can give a person sound but it might not be clear kind of like when it’s a good movie theater if a volume was loud are you would think that that would be better but sometimes it would get distorted yeah we also thought we were picking what do they benefit from acoustical amplification as well as if it is a young child are they doing their diligence and teaching their child this device is we’re going to utilize this device for you if I can just ripping it off every day and they’re not you know placing boundaries around that and teaching them know I’ll be there shoes you need to wear shoes when you go outside either hearing is going to be here so that we can see if there’s any benefit from them if he’s not doing that why put your son through a surgery not going to be set up in a good environment to utilize the processor down there
and I’ve seen some of them go down the toilet by out the car window I’ve seen them being dropped in the Midwest
you don’t want to do those devices no different practices are in place for a reason but typically hearing aids are to see do they have benefit from any kind of information
does it have to do with formation of certain tubes in the ear or is it like a connection to the brain or
do you have that helps transmit the sound so he wasn’t a real hair that’s a lawyer so he wasn’t born with that it was not a way to correct that obviously has basically manipulates that system and transmit The Sounds externally through a magnet on the external part that’s connected to a part underneath the skin that goes into his brain that helps manipulate the song for hims
what it is basically is an electrode is placed inside the cochlea that’s the snail shell portion of your ear and that electrode so let’s see if you unravel the cochlea evil out is kind of like he’s on a piano it goes low pitches to high pitches replacing that electrode in there and with the new technology I actually am I program how much energy goes to different areas of that electrode stimulating those sounds so that the recipient can hear the electrical stimulating the hearing nerve directly bypassing that your load the outer ear is bypassing the middle ear bones and going straight to the nerve amazing
is there a surgery to fix the outside portion like has that the surgery is the electrode as well as the internal processor basically a computer check my view say I have an external processor that collects the sound make a microphone and the device take that sound from acoustic to electrical transfer that to the inside and then plays it out in there so it’s just amazing I mean you had that surgery he had just turned one it was a day after his first birthday he went through a four and a half hour surgery and then it was implanted or the sun was actually turned on at 13 months and he’s talking like any other three and a half year olds and he’s only been here for 2 years that’s amazing you’re terrified so you it’s funny cuz you always see those videos of kids that are like smiling and laughing and are on audiologist told us so I didn’t yell just be aware a lot of times kids are terrified because they haven’t heard sound in 13 12 months or whatever they’re actually gone and so are some was scared he cried and you know he’s in a world has never known before yeah and he was completely silent before then so he was terrified at first and then it was amazing as as soon as you start hearing sounds he was like looking Every Which Way and it was just amazing to be able to finally say I love you because you think for the nine months you’re killing your child every time you’re singing her reading or saying I love you they’re sharing that and just as I know that entire time they were actually hear that but now he doesn’t start talking and it’s amazing how that works right. Totally amazing so so we think are Cochlear implants
he’s gearing probably imagined won’t change like other people as you age
it’ll have any effect on balance or anything like that
and some people experience vertigo but we haven’t seen anything with him he hasn’t do you know it hasn’t expressed any headaches and he’s two and a half so be done maybe he doesn’t know what those things are but we haven’t noticed any of those things with him because the connexin 26 Gene and it’s the most common thing is it’s the easiest form of deafness to treat about this other forms of Darkness that can cause other issues on the road like blindness or other things he tested negative for those things I’m so we were very fortunate that that was this but basically it’s weird because we don’t have any family definition history in our family so my husband actually has one part of the scene I had the other one they were. They caused it and we never knew we had those jeans yeah so it’s just as perfect mix of you know Opposites Attract in here we go by my oldest are all this doesn’t have any of the genes which is very rare the other he didn’t have any of them wow very weird situation but it’s been a blessing because I brought everybody really close my mom moved home to this to be part of the experience and we all learn sign language and we’re trying to be involved with the desk Community as much as we can so just going to be very rewarding I’ll be at scary at first
you never going to have the community I grew up not knowing that people so I was like my God my child be able to hear me but the technology that we have today is amazing actually amazing
audiologist I bet you’ve seen like changes in technology absolutely
the hearing aid that I grew up with were analog hearing and they were not digital at all to adjust them you would take a little screwdriver in the back door of a hearing aid and turn up turn up the volume here turn up the bass and treble now the hearing aids are digital they have a lot of channels much like an equalizer on like a stereo system we can adjust the bass we can adjust this pitch that pitch all along the Gamma or the range of sound we have different bells and whistles on devices my freaking for my processors now I can link up to my iPhone and I can hear it directly in my ears with just I get a direct auditory input from my phone and I’m listening to that person into ears but I have the advantage over someone with normal hearing who’s holding a device electrical sound coming out acoustical sound going into the ear and there might be environmental sounds
definitely improved. So many people in my eye
whenever something is lacking that creativity comes the ideas come so people want to take a problem and see what they can do to
is really lucky when you have an issue to have a comment on right
figure it out
Gerald really big into he’s just getting into the video games Minecraft he got a Nintendo switch for Christmas so he loves those things my youngest one is still really big in the trucks fire trucks police car sound like that but they did love being outdoors they are outdoor kids if they could spend the whole day outside they would but they just got a new puppy a couple months ago and they’re obsessed with her I was taking a long better but they’re boys and so they fight and battle it out everyday but they’re typical boys they love the dirt they love to get their asses so yeah so if you could give advice to younger self about this process of creating a family what do you think you could tell her show yourself some Grace I think one of the things that my husband and I could have been better off is you know he he tried to own a lot of the blame I try to own a lot of the blame and so for a long time and we will try to destroy each other from it and instead of working as a team we tried to bottle it up and not talk about it I think it’s just show yourself some Grace cuz you have no idea what your future but work as a team if there’s going to be things that you might not know your inexperience and my husband I have been through a lot and that the 10 years we’ve been married and they brought us together but that’s because it had to work really hard to be a team but we always and we didn’t always do that we had to work for it yeah that’s that’s useful lesson for younger you and what time we spoke you mentioned something about what you did with the rest of your IVF
yeah so after my husband and I decided we’re done having children we still had 6 embryos left over that are fertility clinic would have destroyed because of the fact that we carry this stuff Jean they basically consider them damaged and so we knew that we’d let them destroy cuz they were years of tears and you know it is all these hopes that we had four children so we decided to you
these are not act like I’m surprised that they would do that and I would imagine they’re many couples who would love to have those absolutely will find that out ya had the same kind of troubles we did and so we decided to there was somebody there any other ones through private embryo adoption and it was up to her and I said hey how did you go about this and she put me in touch with somebody who ran a private Facebook group for families looking for embryo adoption
adoption yeah so it’s basically it’s basically an open adoption but it’s basically tissue is what they say in Michigan because they’re not they’re not boring right so go to that the same process is still an attorney involved or so paperwork that has to be filled by we still had to sign over legal rights to these embryos as if they were children we headed to school to Medical I’m backgrounds Give me history backgrounds we had to disclose a lot of personal information to whatever family ended up going through a stir the family that we chose so it’s still a lot of legality around it it’s just not the same thing that people have picture as far as going into a facility looking to adopt her that already born that are in the system under foster care either tissues or embryos are sitting Frozen and fertility clinic waiting to go through procedure or not so very different than what most people think or an induction process it’s hard to get that route numbers on how common is practices according to the CDC in 2018 approximately 1.9% of all infant births in the US were conceived using assisted reproductive technology where the main technology is IVF there’s a lot of variation across place and time the numbers of IVF for it’s very loud by States and part likely driven by the availability of fertility clinics so for example the states of Pennsylvania and Illinois have roughly the same population about 12 and a half million people but Pennsylvania has 55 as of 2017 Wyoming in New Hampshire has no class and cream to a New York Times article of the two million transfers of embryos to a woman’s uterus recorded by the CDC between the years 2000 and 2016 only $16,000 donor embryos that this number is growing to so what we did is we got in touch with this lady on his Facebook group and she was like okay well put together a profile of what you’re looking for yourselves and so that’s exactly what we did is a Friday afternoon and we obviously the biggest thing for us as we want to be as open as possible so we said hey you know we do carry this team it does cost 25% deafness and these jeans so sick of the way clear that one’s going to be very high obviously so we knew that was going to do to her some people because you know taking on the responsibility
emotionally draining it’s all those things was also very rewarding to have to find the right person and we knew that we didn’t want somebody to have one of our children and then say
we want to be very careful on our selection
this is a drawn-out process it just seems to me that you decided to do all this work to transfer the embryos what what what was that conversation like
so we decide on doing this when our youngest was it was actually right after his first birthday but we felt that we were we were definitely don’t have any children and those emeralds had sat there for upwards of five years and so we wanted to give them the opportunity opportunity at life if you will and we knew that they were so many other families that we’re struggling in life we really wanted to blast somebody like that we have a very strong face and so we wanted to get back if we could but we did ask her family’s blessing for that because the big thing I mean my parents are we have grandchildren in different state though it was a big responsibility to ask blessings for people and understand that at this work for somebody that we were going to have biological children in somebody else’s care in different state yeah we went to a counseling for it we did go through an interview process for the family that we in choosing and you know we did know exactly what we’re getting ourselves into you so it wasn’t I don’t want to go there pretty quick process and it wasn’t it wasn’t but it’s something that we thought long and hard about before we did it and I think it’s been so rewarding sense because once we actually put this profile up with in 2 hours at ten families that were interested that’s amazing and all of them knew that there’s a possibility of them being. And the amazing thing about it
has a death education background so that anybody could handle yeah
it was going to be there originally from the same areas us there around the same age as on us and after we got off this interview with UL is a 2-hour interview and if a long-lost friends I really have Goosebumps that is so amazing, more perfect pear and they end up in the end up working they end up having twin daughters are so it’s really cool I mean we get updates were friends on Facebook they sent us they sent us a beautiful Christmas gift this year with their to Christmas ornament with your fingerprints on it
Christmas gifts centers in great relationship is an open adoption so if we ever want to meet in the future we can if our boys when they meet their sisters in the future they can that’s something we both agree baby wanted we don’t want to close it so that my kids and no other sisters and vice versa and so it’s been a really great blessing it really has amazing how old are the girls they turned a year in May so they’re a little over a year now and I share a birthday with my brother-in-law she was kind of crazy oh my god wow
no there in Iowa so I’m in Michigan there in Iowa so they’re not very far apart and they have a lot of family in the state of Michigan so I feel like they’re super close that’s amazing I am not know I feel like we have cuz I seen on Facebook all the time and all the time and it’s just crazy that’s amazing
it didn’t you literally have given family to this other people which is an amazing thing and so now we have for embryos left and so it part of our agreement we get those back my husband and I and so we get to bless another family with me and we decided that we want the other couple the twins mother and father to be part of that process because now not only are my boys involved but now they have sisters or going to start another family and potentially it was another family with kids that is amazing people who are going for embryo adoption assuming either can’t afford IVF and are having trouble getting pregnant and so this is what they can do
biggest they don’t do anything other than just the process of the implantation which is around $2,000 cuz it’s very inexpensive compared to eyevea 10 to 12 15 uppers depend on the phone to go through so this is been a guest and it it’s just been a really great process great experience oh my God amazing thank you so much I want to look out for that now cuz that’s such a cool thing to do
it’s against dr. Michelle who for her insights about hearing aids and Cochlear implants for giving me advice about how to get transcripts for the art of your hearing today
what she calls
can be found at War stores in the room. Com thanks to Danielle forshee
Yahoo website and thank you for listening if you like this episode
you’re sweeter podcast
Episode 4 SN: An Ectopic Pregnancy that Jumped the Shark
In this episode we feature the story of a young woman who pursued pregnancy in a country different from her own, where language barriers and a different approach to care contributed to what became her life threatening condition. Originally told that she was not pregnant, she learns, many weeks later she has an ectopic pregnancy–but not your garden variety ectopic pregnancy. Thanks to her organized effort and perseverance, she saved her own life. In a second pregnancy, she goes on to deliver a beautiful daughter, who is a mirror of her mother’s driven spirit.
IUI
https://www.plannedparenthood.org/learn/pregnancy/fertility-treatments/what-iui
Role of folic acid in fetal development
https://academic.oup.com/ajcn/article/85/2/598S/4649831
Methotrexate
https://uihc.org/health-topics/methotrexate-ectopic-pregnancy
Ectopic pregnancy
https://www.acog.org/womens-health/faqs/ectopic-pregnancy
https://my.clevelandclinic.org/health/diseases/9687-ectopic-pregnancy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4643163/
Thanks for listening. Feel free to like and subscribe to the podcast at Apple Podcasts, Spotify, Google Podcasts and Stitcher…and leave a review!
In the next episode: we hear the story of a woman who managed a reproductive life defined by uncertainty, and is now on the brink of mothering three pre-teens…