Episode 6: All Kinds of Weather: Charlotte
Episode 6 SN: All Kinds of Weather: Charlotte
The project of starting a family involves some elements that are totally under your control (when you start trying to get pregnant, the doctors or midwives or doulas you choose) and other elements that you expect to be uncertain: what the pregnancy is like or when the baby comes. But for today’s guest, almost every element of the process carried uncertainty: when she was pregnant, if the pregnancy would take, and if her other organs would behave during the pregnancy, to name a few. She weathered all these life changing events, some stressful, some lovely…and now has layered on top of them the blissful experiences of her three young children.
Surfactant and steroids
https://www.verywellfamily.com/what-is-pulmonary-surfactant-2748539
https://www.verywellfamily.com/steroids-for-lung-development-in-premature-babies-2748476
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6464568/
http://www.embryology.ch/anglais/rrespiratory/phasen06.html
Rate of miscarriage
https://www.marchofdimes.org/complications/miscarriage.aspx#
Precipitous labor
https://www.healthline.com/health/pregnancy/precipitous-labor-when-labor-is-fast-and-furious
Audio Transcript:
P: Welcome to war stories from the Womb.
I’m your host Paulette Kamenecka.
The theme of today’s story is overcoming. My guest wrangles with miscarriage, organs that misbehave during pregnancy, preterm birth and placenta problems over the course of all of her pregnancies. In each challenging situation, she prevails. And on her list of upcoming adventures, she will include parenting adolescents. After we taped our conversation. I went back into the interview to include some medical information, and also have the commentary of a fantastic OB who can answer some questions and give us medical context.
Let’s get to the interview.
C: Hi, my name is Charlotte Hornsby, and I’m living currently in Madrid in Spain,
P: and how many kids do you have.
C: We have three children. I’ve got a daughter who is 13 and little boy, two little boys. One who is six, and another one who is seven turning eight in October.
P: before you were on this journey to create a family. I’m sure you’ve had some idea about what pregnancy would be like, how would you imagine it would go?
C: So, I was never somebody that really thought too much about you know the marriage and having babies and having family. I’d always known exactly what I wanted to do as a career. Also, so when I was around 16, I started my period when I was about 14 to an A 13. I had a lot of issues with with periods. I was having you know very long periods, short periods, two in a month, sometimes not one for a while, and I was told that the likelihood was, I would have issues getting pregnant, if I was able to get pregnant. And that was when I was around 16,16 and a half, something like that. So, I think in the back of my head. If it hadn’t happened. You know, it wasn’t something that I dreamed of just in case…. you know? and then, as you know, as often happens, you meet somebody, and it just clicks. You want to have children with these, this person. I’m a very independent person. And I’m also quite laid back so again I wasn’t planning I wasn’t thinking too much about pregnancy, I just presumed, everything would go okay. And finally I, you know, I have quite a strict Catholic upbringing. So, I never talked to my mom about pregnancy. You know, giving birth, nothing. Literally nothing. In fact, when I was asking my mother about childbirth. When I, you know, when I was pregnant and she told me it was like a bad period. That was, you know, and that’s sort of– I can set the scene for how much discussion went on in my household about pregnancy and babies…. it just was…It was just something that happened you didn’t talk about it. The woman dealt with it. So that was my kind of background to to pregnancy. Yeah.
P: Wow. All I can say is wow. Do you laugh with your mother now about the bad period story or no?
C: After I gave birth, my to my daughter and I did call her on the phone and I said to her, I don’t know what kind of hell of a period you have. And that was nothing like my birth, and she was just like I don’t know what I could have said to you, you know, what am I gonna say it’s really painful. Okay. We do laugh about it now. Yeah. I’ll try to speak more to my daughter about it but then I got…
P: I feel like that’s not much preparation.
C: I know it was no preparation, I moved to Spain when I was 26 . And it was just a few years later that you know I got pregnant for the first time, but no one in my group of friends had had babies yet. So, you know, I was one of the first going through it. I think maybe if you know you’d had a close family member, you know a friend who’d had a baby you might be a bit more aware of everything that goes on. You know, you see the Hollywood movie idea of morning sickness or all of that. But the actual practicalities of getting pregnant and being pregnant. I was pretty. Yeah, pretty naive, let’s say.
P: So, with, with all that preparation Did you get pregnant, easily, the first time?
C: Yeah, like, so I got pregnant them the first time around, 28, and I was working, we were both working, my husband and I were both working we’re both traveling, and I didn’t really know I was pregnant for probably about eight nine weeks something like that maybe a bit more, because I’ve had such irregular periods.
P: Yeah,
C: so, you know, it didn’t surprise me that, you know, I hadn’t had a period. And then I think probably around six weeks, five weeks, something like that. I had that implement… implementation bleeding I think it’s called. So I presume that had been my period so I really didn’t think anything of it I didn’t have any symptoms let’s say, for a you know for a while, and then around eight nine weeks it was like, Okay, well, still haven’t had a period. I took a pregnancy test, found out we were pregnant. And then, I don’t know why we just sort of carried on, like you know it was okay, there’s nothing we can really do you know like do you okay you know we were happy, but we were both very busy with work. So, and let’s say because it wasn’t something we talked about previously or something we talked about much with my family. Yeah I told them, but then it wasn’t really a discussion, much more after that. And I just presumed everything would go, fine, you know, and, you know, when I needed to worry about it. I would start worrying about it. And then I went for the scan in Spain, it’s, it’s quite a controlled process, you immediately go with a doctor or a gynecologist. It’s, you know it isn’t a midwife led it’s not a, it’s not really a woman controlled thing it’s like, you will go and see a gynecologist. You will go and see them every month, you will see this, and my gynecologist was a man. He was an older man who was probably in his late 60s man, who was considered to be a very experienced gynecologist in in Barcelona, and I would imagine that he has been delivering babies for the same way for 40 years.
P: Yeah.
C: You didn’t ask any question you know it was really yeah just, I’m telling you what to do, I will tell you, everything’s okay. Yeah. I was so around nearly 16 weeks, I had this spotting, you know you read as you do on the internet. Fatal thing to read on the internet. They say, you know, rest. So we did bedrest, but unfortunately, the bleeding got heavier very very quickly, and I miscarried at 16 weeks, and I fully miscarried, I…..ahhhhh….I was in the bathroom in a toilet, you know, and you can feel everything passing. Feels like cramps. I didn’t go to the hospital. We actually. I don’t really know my husband didn’t really know how to cope with it, either. And, yeah, it was such a surprise because you’d never think…no one ever speaks about miscarriages.
P: Yeah.
C: And, you know, even if you know everything about it you only speak about pregnancy and babies and, you know, breastfeeding and. So, after it happened. Well, you know i. It was very it was very upsetting. But we didn’t really get we never really talked about it as a couple, too much. And what we did do is try and get pregnant very quickly afterwards. And I wanted to get pregnant very quickly afterwards. And I decided to change my doctor, as well, because I had, you know, after I miscarried obviously we did go to the doctor and I did go and see him. And yeah, I mean he is. There’s nothing there you know there’s nothing we can do. So, I don’t think doctors either are trained to know what to do, or to say, with a miscarriage, like it was very much and you haven’t had to go to hospital you haven’t had to you know it was even though it was quite late, 16 weeks or,
P: Yeah, that is late.
C:I didn’t have to deliver I didn’t have like contraction pain.
P: I checked in with an OB doctor Nicole Wilcox to ask about the medical training doctors receive to manage news of a miscarriage. Hi doctor Welcome to the show.
Dr. Wilcox: Hi, thank you for having me.
P: I’m assuming doctors are trained to talk about miscarriage or what’s your experience.
Dr. Wilcox: Yes, you know, I think we all, you know in training experience having to break that news to a patient. Of course it’s a devastating thing. And it’s uncomfortable, but at least at this you know at this point in time, I think you can’t go into the field of Obstetrics without, you know, knowing that this is part of the job you know and you know it’s it’s not so much book learning as on the job learning how to, you know, gently break news. You know, prepare somebody give them time, you know, to let the information sink in and watching other people. You know what, you know, watching your, your teachers and your attendings sort of model that for you. Yeah,
P: yeah, that sounds it’s hard on all ends.
Dr. Wilcox: Oh yeah, yeah, yeah.
C: And I think also I probably gave the impression of I’m fine. You know, I’m coping with it. Let’s move on. So we did, and I got pregnant again. I think I took a test when I was about six weeks, because I think I was more conscious about it this time I probably was a little bit more on it. We went to do the scan at around 10 weeks which is a little bit early, you know they say really you go to do a proper scan to see the heartbeat and everything around 12 weeks here. But I think I was probably a little bit more keen, and I know that miscarriage in my head this time was really yeah it was in my head.
P: Yeah,
C: that it never had been before. So actually the pregnancy wasn’t too bad. I had a bit of morning sickness…You know nothing, nothing really terrible. I followed on this book. What to Expect When You’re Expecting which I hadn’t done the first time.
P: Yeah,
C: so as you can see I was really on top of it. I think I probably was killing Nuno with. Oh the baby is now this size and that size. Now, you have a bit of like a probably in my head I had a bit of a worry when I was getting past that 16 weeks stage.
P: Yeah,
C: But I was going to a female gynecologist. She would be scanning and weighing, which is very important in Spain, they like to weigh you every time to make sure you’re not gaining too much weight. Again, very different from the UK, like you’re really only allowed to gain, no weight in the first trimester a few kilos in the second and a few kilos in the third, and they’re really on top of weight gain in Spain…
P: because it’s not healthy for the baby or ?
C: not healthy for the baby not healthy for the mother. So really are it’s very much like control, I think that’s what I remember more than anything is being weighed a lot. And so, then we just everything was seemed to be going fine didn’t have any real problems. We’re still playing squash at around 24 weeks…. that my husband and did say no, no more, you’re, you are very competitive so he banned squash at that time, and then we decided to go for a weekend last weekend as a couple by ourselves we flew into Paris and midway through dinner, you know, instead of sort of complaining that some pain in my stomach, we got home, we see a large red lump hot right on my side, right side my body, and we call the doctor in Paris. The doctor came, so they came to the hotel, as opposed to us going to the hospital. And then I actually got taken in an ambulance to the American Hospital in Paris, and they said it’s your appendix. I was now 28 weeks pregnant.
P: Wow….
C: you can’t have the same anesthetization that you would do it just everything is is a lot more complicated also apparently if you, if you do too much the body begins to make the contraction to start expel it you know, just,
P: yeah.
C: I remember it. You have local.
P: That means you’re awake.
C: You’re, you’re awake. You’re awake, which is you can’t feel anything. You can’t feel anything. But yeah you’re awake through it because they’re really monitoring, everything. I think it went fine. But yeah, I started contracting, which is quite painful, on an open wound.
P: Ah, God, wow
C: so that was that was quite painful. and in hospital for around 10 days afterwards, just because I was contracting so much I couldn’t be moved, they were giving me injections to try and stop my body from from contracting from the body from contracting. Then, we, we had to fly back to Barcelona.
P: So the drugs they gave you stop and contractions?
C: Yeah, they do, they stop. So, but you have to take them, I can’t remember how many times but I know I was injecting myself, my leg probably twice a day I think I, you know, I can’t remember exactly but I remember it was a couple of times a day that I would have to give myself an injection in my leg, and I was in bed rest, essentially, I didn’t go back to work in the office, just because I could not be walking around. After you know after this operation, they gave me steroids for the baby’s lungs. I think at around 33 weeks, something like that.
P: Breathing problems are the main cause of death and serious health problems for preemies and here’s why. The lungs are still maturing in the third trimester. In the last few weeks of pregnancy, alveoli–the tiny air sacs that fill with air when we breathe– are forming. To work efficiently these air sacs need a chemical called surfactant, and they don’t have enough of it until around 36 weeks. This is where steroids come in, they can help fetal lungs make surfactant so the preemie can breath more easily when it’s born. Steroids also reduce the chances of the premature baby will encounter bleeding in the brain and serious bowel complications.
C: And they said that they were going to stop it at 34 weeks, and two days, because at 35 weeks she would have been okay for delivery but they were hoping that maybe after that period of time, my body might, you know, hang on a little bit longer, so I stopped the injections, literally within two days my waters broke in the morning, so I immediately started. So my waters, my waters broke middle of the night…
P: You knew what it was at this point? we’re on top of things….
C: yeah, now I’m okay with pregnancy. my waters broke, I called my sister, sister and I had always agreed that we would be each other’s birth partners.
P: That’s awesome.
C: So, yeah, it was, you know, it was a really sort of we’re very close. We’re just two years apart you know she was, she sort of gets me like very well. So we had agreed this. However, I had found the pregnancy process in Spain very different to how I had heard about it in the UK. So in the UK you’re encouraged to write a birth plan, and you know it has this idea of whether you want music, or the lights, or, you know, do you want your partner there? you know just has this whole scene setting idea so.
P: Yeah
C: Because I know my Spanish was okay, but it wasn’t fantastic, I probably been reading more from the NHS than I had been from Spanish sites, so I had actually said to my doctor. Oh, when do you, you know, when do you want my birth plan. And she said to me, Well, the plan is that you give birth. And I was like…
P: Ha, ha, oh you read it!
C: Exactly. Thanks, You skipped to the good the part. There was no birth plan in Spain, they don’t care. The, the plan is that the baby gets out safely. That’s it. So I insisted that I wanted a doula, because my doctor had warned me that Alistair my daughter was likely to come early, I knew it was going to have to be more medically controlled, then I would have liked you know I had a bit more of an idea, because I knew she was very little. So I worried about if I was taking drugs, what effect that would have on her. And I worried that it had been quite a stressful pregnancy, so I had tried, as much as I could, in a pregnancy that wasn’t going perfectly, had had a lot of medical intervention to, to bring in some more natural kind of support. So my doctor reluctantly agreed to have her there. She came to my house, my husband was traveling. So, you know yeah it was something…. I hadn’t really wanted him at the actual birth like I expected him to be there to get us to the hospital. My sister to be in the room and for him to be there once the baby was born, but I hadn’t really wanted him there at the actual birth, and he was fine with it. He was not fighting to be in the room, but they did presume he would be in the country. Ha, ha…
P: ha, ha…
C: The doula, she came, and I had gone back to sleep after waters breaking. I’d had a shower. You know I’ve been eating, relaxing. Thinking everything was going pretty well. And then at some point we went to the hospital and it does change everything. You go from feeling very much that you’re in control and in and relaxed, to feeling. Yeah, this, you know, this is serious now this is, I don’t know it it just takes you out of your control zone your into someone else’s place.
P: Yeah, it feels like something’s being done to you.
C: And it was, for sure, it was right get onto the bed you know I luckily had the doula that we were both saying, No, she wants to move around. She wants to go on the ball you know this.
P: Yeah, yeah,
C: that you can sit on…and I I locked myself in a toilet at one point, there’s you know I went through I’m sure what every woman giving birth goes through it’s coming out the wrong way. You know it’s breaking my body, and I’m sure it’s going through a bone or, you know, a little bit of the plug or something comes out, I think I’ve done it now you look in the toilet to see if you’ve given birth,
P:….or a very bad period,
C: or very bad period yes stinging. It was stinging…. I didn’t have an epidural I had some painkiller, put in the nurses were pushing and pushing me to have some painkiller. What they want is the woman to be in bed with an epidural. And, and to get the baby out.
P: Yeah,
C: well they don’t want is the woman to be walking around taking a long time to have a baby.
P: Yeah,
C: so, you know, I really can’t stress enough how many times we had to say, No, we’re fine. No, I’m okay. No, I don’t want the lights turned on, no I don’t need that, you know, so now it progressed, it wasn’t that long…she took a couple of hours from waters breaking from when the contractions really started my sister was there. Yeah, and she came out she was very little. She was very little she you know she was under a kilo and a half. I think it’s like….
P: It’s like two pounds and change or something…
C: Yeah, I think it’s under three pounds, which is tiny. You know when my husband saw her he kind of freaked out a little bit we have a photo of her next to the old Nokia phone.
P: Oh wow.
C: She really is. She’s, and she, she looked very alien. She looked as if she wasn’t ready to come out you know her eyes were still very pulled she didn’t have any fat buildup on her body, and she didn’t have a suckling motion.
P: Yeah
C: so they tried to put you in, put the baby to the breast, because I had said and luckily the doula again. And I was like, No, she wants to breastfeed because they were very keen to get her feeding with a bottle.
P: Yeah.
C: And we were like, No, no, we would be trying to work her jaw. We express milk and pipetted it in… in Spain they take the baby away, you’re in your room, they take the baby away they bring her back. When she cries, and then they take her away again. And you have to insist that you don’t want cologne on the baby.
P: Oh my god.
C: Yeah. And they were very concerned that she wasn’t having her ears pierced despite being so tiny, because otherwise how would anyone know that she was a girl.
P: Also funny
C: It’s a really, really strange. You know, but in the end, she had a lot of good care, I have to say and I did feel very secure that if anything had gone wrong, we would definitely be in the right place. And considering her weight considering you know how early it had been considering the drugs that had to be taken I think all of those obviously had an impact on her for how much she’d grown. You know, we came out of the hospital, were able to take her home. And she would sleep a lot. We had to like wake her up to try and feed. But, yeah, I mean it, it went pretty well considering first baby, and that you know we were by ourselves. touchwood. She’s a very healthy very strong 13 year old. Now,
P: that’s a very good ending.
C: That is a good ending!
P: How old does she get before you get pregnant again?
C: So I wanted this two year gap that I had had. So probably yeah she was about 17,18 months when we started trying again. And it just didn’t happen, for whatever reason, wasn’t happening and it was probably it was like four years down the line, it’s still not happening. The doctor you know we were still seeing the same gynecologist and didn’t seem to be any rhyme or reason for it. I did have my mother telling me, you know like, as mothers like to do. It’s really strange because you know I just had three babies every two years and no problem and if I’d wanted to have more then…..thanks for that ever so helpful. Yeah, great advice. Don’t make me feel bad, you know, I think, I think, in a way, my husband probably would have been okay with just one child, like, you know, He may have wanted a boy, but she was such a good child, like she really, you know, she didn’t cry she did everything you would still she was just so easy and so nice that we weren’t maybe stressing as much as if she’d been really difficult and us thinking oh my god we really need to have another one now otherwise we’re never going to do it. So around. Now you get four and a half years. I got pregnant again. I didn’t feel anything. Didn’t have morning sickness didn’t have issues, was going to the same doctor. Everything seemed fine around February. We went to ski, well I wasn’t skiing, but you know, and I was 17 and a half, nearly 18 weeks, just here just in Andorra, and I began to get cramps, and no spotting at that time but yeah the cramps were bad so it was it was weird. Again, weirdly after having a successful pregnancy hadn’t been thinking of miscarriage, like, just didn’t come into my head began to get some spotting. There was spotting. And it got pretty bad. So we decided to go to the hospital because it wasn’t progressing like it had the first time, I think we actually called the hospital and they said to come in and Nuno couldn’t come into the room with me. It was a public hospital because we weren’t in Barcelona with my doctor there were two, two nurses there, and I you know I knew something was wrong, because I had, you know, when you read on the internet, tells you about spotting.
P: Yeah,
C: and it’s about the color of the blood, and you know, this is red blood. This isn’t old.
P: Right. Right.
C: You know something’s wrong. And they decided to do the scan, like as if you were having a scan. You know, like a pregnancy scan, and there was no sound like no heartbeat. And then they turned. No, you can see on the screen, and that they you know they turned the screen away afterwards, and the doctor said “No hay nada”, there’s nothing there. I had to have a DNC, which I use the term as if I know exactly what they do, I don’t know, I decided never to look too much, what they do. I know it’s used when you miscarry but you don’t have a complete miscarriage, right, I, I found this miscarriage, even though it was a very. It was a similar time to the other one maybe a little bit later. Very difficult, very difficult, because, because I had to go to hospital.
P: Yeah,
C: because I had to have intervention.
P: Yeah,
C: to finish the process. It felt a lot more like my fault, like a choice I had made, even though it wasn’t. It felt like I had intervened in the pregnancy. And, which is crazy because, you know, I had done the same as I’d done with the other two, but I found it really tough. I found it really, really tough.
P: I checked in with Dr. Wilcox again, to find out how patients commonly respond to miscarriage.
Dr. Wilcox: First thing patients want to know is what they did to cause it. Yeah. And they essentially it’s hardly ever the case that they’ve caused it. So I always make sure to review that with them to say it’s not because you exercised, it’s not because you had sex it’s not because you ate sushi. Yeah, you know, or you took Tylenol or whatever it is, that, That, that, you know, we know that this is just, you know, one in five pregnancies this happens. And you have to empathize, you often have to go over that several times for them to really hear it it’s just like hearing you have cancer, you know that, you know, very often everything else, after that, you know, they’re there you know you’re not hearing it.
C: And I had contractions with it, I, I didn’t have to deliver like you know these horror stories. I didn’t have any of that.
P: Yeah,
C: I just do remember that I remember having having this scan, which you associate with a good thing because it’s when you find out you’re pregnant. When you first hear the heartbeat.
P: Yeah,
C: you know, all of those positive things them doing a scan, and not turning the screen away and not being trained to turn the screen away.
P: Yeah.
C: That’s something…..
P: Right. Yeah, it is super hard. Yeah, I feel like we would all be a little bit better served, obviously if people spoke about miscarriage but also if you knew that the miscarriage rate was relatively high it would be hard to blame yourself for the outcome. Because …
C: exactly because you would understand that this happens so much.
P: Yeah, it’s so frequent that that are like the implementation isn’t quite right or the or the cell division isn’t quite right…
C: and that you know and you can read about, you know the fact that it’s nearly always fetal abnormality that has caused, you know, the miscarriage and, you know, after having one, you obviously do read a lot. But, yeah, having having to go through a procedure to clear things up to, to finish the pregnancy was just a very different, a very, very different experience, and I don’t blame the nurses because they are in just a general Ward, you know, they weren’t…
P: They weren’t ob nurses yeah
C: you know it’s it’s literally just a woman comes in, far along in the pregnancy business, and they knew I mean I guess they knew from what you know what was happening. Yeah. Pregnancy had already completed as I think. So, we didn’t get pregnant immediately after that, again, we didn’t really speak about it, we don’t speak about miscarriage. And it’s funny, even after going through two I don’t think it’s something I would probably tell my daughter that it happened to me, but I’m not sure I would go into too much detail about it because, much like pregnancy, I do feel it’s something very personal. For each woman and just presuming that something that’s happened to you, how it’s going to be for someone else maybe, you know I would tell her it’s happened so she’s aware.
P: Yeah.
C: But I think it. You know, maybe it will be really tough for her and the fact that the first one I coped with okay you know wouldn’t help or the fact that the second one was only bad because of that. So, you know, so it’s a hard subject. It’s a very hard subject and yeah I don’t, we don’t speak about it really ever. Anyway, I did get pregnant again, we’re still in Barcelona, same doctor, a lot of intervention, a lot of I had terrible morning sickness. You know I’d be sitting on a sofa, turn my head and vomit, like for nothing. So, I had to go into hospital because I was so dehydrated. It was the middle of summer in Barcelona and it’s really hot.
P: Yeah.
C: And you know, this time you have a child, so you don’t rest as much, but the difference in insane in a good way, maybe, is that they also don’t think women should suffer because you’re pregnant. Yeah, so they will give you medicine to help with morning sickness, which I found out later in the UK, they do not do, it’s this stupid idea that I think it’s only because women are pregnant, that you get told Well, a healthy pregnancy will have morning sickness, which is rubbish, that you were getting sickness and have a, you know, an issue. Yeah. Absolutely none but you know it’s some of these ideas that woman need to suffer and it’s just part of this natural process that we have to go through, but I had various minerals or whatever that were low so I had to take more medicine. I was being monitored, a lot I was being monitored on a monthly basis, but I actually often have morning sickness was under control which I think I suffered for until I was about 16 weeks. When I went to hospital, probably till about 24 weeks, I was having to take medicine to stop myself vomiting. But after 24 weeks. It was okay. And we were quite excited, we didn’t know what it was going to be, which we had known with Alicai because the doctor in France had just said, Oh, she let go. And I knew, because of what happened with Alicai think that the likelihood was you know it was going to be medical controlled throughout. And so, and when that started two weeks before. Just a checkup. I felt fine been working, and the doctor said okay, you know you feel like okay, well, fine. Okay. Yeah, the heartbeats pretty weak. Okay. Have you noticed the baby moving. No, but, you know, very busy and working full time child, you know, traveling, and nothing. So they gave me a juice drink baby didn’t respond. They did this a Doppler where they see the oxygen and, and she said okay baby needs to come out. I’m like 32 weeks. So no, she needs to come out a he and the baby needs to come out to this, so I’m like, Okay, let me call my husband and I will go get my bag you know that I’ll be whatever I’m thinking, can’t be that I don’t know I just didn’t really hit me what she was saying, you know, so she could no, it needs to come out now. So, I had gone to the hospital with a girl from the office, who was my assistant. Who’d never had a baby, who wasn’t married, who knew nothing.
And I’m like, oh, okay, so I’m there writing an email to China, which is my job. And, while they and I think I just got into the zone of this can’t be happening it’s not, it’s not real, because they broke my waters, because she wanted to see if he was the baby was actually quite a good size, like, you know, for the 32 weeks he was quite.
P: Yeah,
C: good considering very early. So, waters broken, and she said to me, you know like, you need to take this a bit more seriously. You’re about to have a baby. I don’t know why I, you know, it just wasn’t computing. Anyway, I had to go into another room, they prepped me for cesarean, because there was something wrong with the baby’s heartbeat and there was something wrong with the placenta. And again, because I don’t have that much knowledge and I still didn’t have that much knowledge, you trusted I just trusted the doctor I just did what they’re telling me I had the epidural. And they began to take oxygen levels, from the baby’s head, but they did say that he you know he was progressing down there, because he wasn’t in place to come out,
P: right, right
C: but once the waters broke. Luckily probably because he was so small. You know, he was moving down. So they said okay looks good, but there is this time, where it’s. If you go too late and you have an emergency scenario, it is more complicated because the baby is too far down the channel, you know, so they wanted to see his oxygen levels his oxygen levels were not great, but you know manageable. And I think, I don’t know how long but it was a couple of, you know, it wasn’t love between waters breaking, him being born and coming out, blue, and I mean really, blue, and I was because of the epidural I think I was in this weird, you know, place I didn’t really know, but I just can see a baby who’s really he really was. He didn’t make any noise, and they take him…I’m laying in a bed like this.
P: Yeah, horizontal…
C: and they took him across the corridor, and I can see loads of medical staff with their, you know PPE, as we all call it now would have medical clothes, all around this table I can’t, you know he’s gone. He’s just in a swarm of bodies, the placenta came out, and the doctor showed me, and I hadn’t really….No idea what a placenta looks like, like, like a sheet of paper with a hole in it. And so this is not normal, you know something, there was something wrong with the placenta. Did you have a trauma. No, you know, like a car accident, as if you wouldn’t mention your doctor physical trauma, no nothing, they presume that I had been hit. And because of, you know, there had been some kind of in their head, there’d been some damage to the placenta because everything had been progressing. Okay,
P: Yeah.
C: So when my husband arrived at the hospital he wasn’t able to come in, immediately because they wanted to ask questions to him and to me to try and, you know, make sure I guess that everything was safe and secure. We managed to convince them it was my placenta got sent to Germany, because it was so unusual. What they had seen but the, the placenta had failed, basically, for whatever reason, it had failed and Byron my, my son had had oxygen depletion at some level. I don’t know how much I don’t know for how long. But he had, he was a similar size, to his sister, you know, more or less, again under the two kilos, very small baby, but he was in an incubator, because they were worried about other you know complications with his lungs he hadn’t had steroids, which is something that they would have given you know if they’d known he was coming early to get his lungs up.
P: If you’d had time, Yeah,
C: with the eyes as well so he would have patches over his eyes. And again, he had no fat, like that. It’s weird to see but it’s what for me it wasn’t because of both babies looked the same, but it’s like a baby but shrunken because you’re used to seeing chubby arms or a big tummy. And it’s not like that they’ve got the skin. But you can you can almost see through it and you can’t see there’s no fat.
P: Yeah.
C: They look like so they’re their faces look very pulled. They look very pulled. Again we stayed in hospital, it’s obviously more complicated because we had my daughter at home, but I know that if we’d been in England, having Byron, he wouldn’t have survived. It was only…
P: Wow, why do you say that?
C: because you don’t have the same interventionist idea and follow on, and I know this because obviously I had a baby afterward in England that they would have been monitoring and checking, so much, and if he hadn’t come out that day. If I hadn’t have gone to the hospital. I’m 100% sure that we would have been looking at a very different result. For sure, I feel this really strongly that, you know, as much as I probably lean towards the natural birthing—even though my first two weren’t, I do thank God for the fact that the doctors were able to do this monitoring, you know, get him out. Give him everything he needed. Afterwards, monitoring me able to be looking at just, you know, all the different, you know, I had the blood flow or the oxygen flow into the placenta all of those things, and now he’s, again, he’s turning eight in a few weeks, very big, strong boy. He’s on the autistic spectrum. I don’t know whether that has maybe been linked to because of the birth I’m not sure. And I did have to take quite a lot of medication, with him, and you know, obviously, whatever had happened with the placenta.
P: I don’t think the medical community has nailed down definitive answer yet on what causes autism, but I asked Dr. Wilcox just from her experience about births like that of Charlotte son. I include this because I think as moms we feel responsible for everything our children encounter. Can you talk for a minute about autism, what are the current ideas about its origin and do you think oxygen deprivation, can lead to autism.
Dr. Wilcox: Yeah you know it’s not, not necessarily an area of my expertise, but that. I think the most current thoughts are it is a combination of genetic and environmental factors, certainly not typically oxygen deprivation oxygen deprivation during during labor, and during the delivery, certainly can cause brain injury. But that’s more of an acute presentation. That can lead to seizures that can lead to really significant physical and mental issues, but different from autism.
P: Okay. That’s useful.
C: he’s a very bright and quite energetic boy, but he does have some challenges now…so then when Byron was 10 months old we moved to England and I will still breastfeeding and around a month later I think, I found out I was pregnant again. And this one was a surprise where as the other two had you know pretty much been planned… this third one was a surprise and having morning sickness and breastfeeding is tough…is tough…so I would be breastfeeding, put the baby down, be sick, pick the baby up, breastfeed…
P: Wow, that sound like a lot
C: It was a lot but the English experience is completely different. You normally would not go with a doctor, you’d go with a midwife. They don’t just scan, they actually feel where the baby is, they’re measuring you, they ask you how you’re feeling, you know, just how you’re coping, they’re not like are you losing weight or are you gaining weight, but how you are actually feeling about this. In Spain, you go with a gynecologist obstetrician and and it’s very medical. Whereas in the UK, it’s obviously seen…it’s not medical because you’re not sick
P: right
C: so you don’t need to control it as much as you need to monitor and support it. In England you have only a scan at 12 weeks 26 + 38 that would be the norm. Everything had gone well, 38 weeks, about to take my daughter to school, had the baby in the pushchair, and my waters broke. I wasn’t really ready, which is ridiculous because you would’ve thought I would be, but I was not. Didn’t have a bag packed, so I call a friend. Nuno was in London, so I call him, I was like, you are in the country, we’re doing this…we can do this! Yeah. She took my daughter to the school. Fifteen minutes later I’m like wow, the contractions are heavy here and she’s like you need to go to the hospital now. And I was thinking, this is crazy, you know, it’s fifteen minutes….
P: yeah
C: And it’s only 20 minutes to the hospital. So I’m thinking, okay, it was an hour from where my husband was in the center of London to where we lived in Richmond and I had planned on staying home until he could…but no, I had to call a taxi, or she had called a taxi, and towel on the back, going through Richmond Park thinking oh my goodness I’m going to be having a baby in the middle of a park. Anyway, I get out of the taxi, waddle, waddle into the hospital reception..
P: yeah
C: and in a very English way, rather than screaming “I’m having a baby” I just went, “um, Excuse me?” like this…luckily the receptionist looked at me and obviously thought “woah, somethings going on there”. Nurse came over, went, Okay, immediately got a trolley, and I was on my knees, holding onto the trolley, scooted up an upstairs room. And it had been 35 minutes from waters breaking to now…
P: Wow
C: so she looked, and I was already fully dilated, or not fully but pretty much. A poor poor midwife, junior midwife came in and asked if I wanted a bath, she obviously hadn’t been told…I will always regret being so mean to her….and saying “no”, but not that nicely…I really wanted an epidural because the pain was horrendous, it was horrendous. I had a little bit of gas and air but I think I chewed the nozzle off. And I was on my all fours and yeah Elliot was born in less than an hour from what. Yeah. And it was horrendous. It was horrendous.
P: What Charlotte just described is known as precipitous labor, which is defined as a birth that takes place less than three hours after regular contractions have started as she knows a fast delivery while nice on paper is no picnic, a labor for someone who’s had kids before can last on average anywhere from three to 15 hours, and that time was well spent by your body, which uses it to slowly stretch a fast labor can lead to tears, it can be extremely painful as there’s very little break between contractions and hormones like oxytocin which decreases feelings of pain and promotes bonding are slowly released as the body progresses through various stages of labor. This release may not be well synced we’re rapidly we’re back to the interview.
C: And I had a stupid midwife, she said to me, I’d obviously told her this was my last baby and she goes, as this is your last. Aren’t you glad you did it all by yourself, as opposed to having, you know, an epidural. I you know I can still hear the exact words of it, thinking, hell no. I did all of them by myself.
P: Yeah, yeah, yeah.
C: Are you kidding me you know him but three times, all by myself. I really struggled really really struggled with this third pregnancy my mother arrived, Nuno arrived after an hour, but they were shocked because the baby was already my arms. I didn’t want to Hold baby. I didn’t want to try breastfeeding. I didn’t want to accept that I’d given birth or something anyway I really, really struggled to be bonding with this baby with, you know, with my son, maybe, normally in England they get you out quite quickly. Like sometimes you can give birth in the morning and they get you out by the evening.
P: Wow,
C: Well, it was yeah I mean really, I was in the hospital for a few days because they could see that I was not. I was going through the motions of it because especially as a third time mother, yeah they’re thinking how you know she’s gonna know exactly what to do. No problem. We know she’ll be fine. But I don’t know what I did what I read afterwards, these very fast labor’s, you don’t go through all of the different processes you don’t get the same hormonal release a different hormone release that tells you you know all the different things that you need to bond to you know all of those parts, it needs to be a slow release them to the baby home. Boy, it was a big baby quite, quite a big baby for me. And he had tongue tie quite bad tongue tie which was, you know, quite challenging for him breastfeeding so it’s not painful for me.
P: Yeah,
C: you have somebody come to the house to deal with Tongue Tie because they do it after I think two weeks old or something. And it was just amazing midwife. She obviously knew that something was up, I was having a hard time of it, because she stayed a long time and she talked to me a lot. She. She really understood that thing of women needing women. When you have a baby. Yeah, this my sister, she couldn’t come. For for that for Elliot’s birth or for afterwards, for a few days I mean not long time but I really missed, having her. She. Were you know and so, yeah, I missed that female thing, having that midwife come and just really be able to sit down and talk to me and just keep non judgement of the fact that you’re struggling to bond with your baby which everyone thinks is immediately normal.
P: Well, it’s also driven a lot by chemistry right as you described. And if you don’t, if your chemistry is not driving that it’s not really a choice, right, you know,
C: so but having somebody who sort of understood it, and then the thing about you know the UK, is that once you’ve had the baby. That’s it. You know, there’s a check at six weeks where, you know, they simply ask like are you, you know, are you suicidal. And if you’re not suicidal, then they’ll take drugs, and you’re done. And then after that the only person they care about is baby for vaccinations. Yeah, so there’s no follow up. And with the other two, a hadn’t needed it so much, but strangely with the third one that probably on paper look like an easier. Yeah, is hard time
P: that sounds really challenging, but now you’re now you’re just busy with three busy kids and
C: yeah I mean we deal with Byron’s autism. And, which is challenging but luckily my husband and I are on pretty much on the same page on most things. It’s all good lucky, after you know some challenges ahead. I think I think it’s all been pretty much I look back on it. It’s funny, I, I can see it’s more traumatic than when I was actually going through it. Yeah. But yeah, there we’ll get lucky there okay.
P: That’s awesome. That’s a great story so my last question for you is, if you could give advice to your younger self What would you tell her?
C: I think I would say, having another woman. Whether it’s a doula or a sister, a mother or a group of females. Yeah, really helps. And even if you’re like me and you’re quite independent, it really does support you in a way that even your closest husband partner, you know, can’t. And I think the other thing I would say is that to remember that when people are giving you advice, they are trying to help. They’re not judging you, but it does feel like it. And, you know, whether that’s why you’ve had a miscarriage, whether it’s breastfeeding, whether it’s. So, let the sort of society around help you. And you don’t have to listen to them all and you can do you know you can say, Yes, thank you. But you don’t have to be this sort of strong, I can do everything. mother is
P: Yeah.
C: And it is such a challenge and I think I’d like to ask for help, maybe a little bit more, tell people that you struggled with it, tell people that you are struggling with it. And whether that’s your husband, whether it’s you know whoever. Just ask for help. I think that’s probably what I would do if I did it differently. I, you know, I wouldn’t keep telling on, I was okay. I’m okay. I’m okay, because yeah it’s worked out in the end but it probably was a bit more difficult, because of doing it that way.
P: Yeah, that sounds like good advice. Charlotte, thanks so much for coming on here and sharing your story I think a lot of people will find it valuable. Thanks so much.
C: Again, you’re welcome.
P: Thanks again to Dr. Wilcox for sharing her medical expertise. Thank you for checking out this episode. An extended version of the show notes can be found on war stories.com. Those include links to medical issues we touched on this episode. If you enjoyed this story, please consider liking and subscribing to the podcast. I’ll be back soon with another inspiring story.
Episode 5: Dreams do come true X2: Danielle
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: An Ectopic Pregnancy that Jumped the Shark
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…
Episode 3: Good things Come in Threes
Podcast cover art by Kilochko Daria
Episode 3 SN: Good Things Come in Threes
Today’s guest approached pregnancy, and the motherhood that would follow, like a competition–one that she could excel at and ultimately win. And her first pregnancy, while not seamless, was relatively straight forward, giving credence to her early ideas about the process. But these beliefs lost steam when she had trouble getting pregnant the second time, and were fully deflated when ten weeks after a positive pregnancy test, a scan revealed that she was carrying triplets. A pregnancy with triplets is not for the faint of heart. Despite the challenges, she did everything she could to bring these babies safely into the world, and ultimately prevailed. Listen to her inspiring story.
Resources mentioned on this episode:
Creighton model
https://www.drsarubala.com/blog/do-you-know-your-cervical-mucus
https://www.aafp.org/afp/2012/1115/p924.html
https://www.creightonmodel.com/references.htm
HSG
https://www.webmd.com/infertility-and-reproduction/guide/blocked-fallopian-tubes-test#1
Clomid
https://www.webmd.com/drugs/2/drug-11204/clomid-oral/details
Frequency of triplet births
https://www.cdc.gov/nchs/fastats/multiple.htm
https://www.infoplease.com/us/population/multiple-births-1980-2012
CPAP
https://www.verywellfamily.com/continuous-positive-airway-pressure-cpap-2748545
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 survived a missed ectopic pregnancy, and went on to successfully have a child…
Episode 2: You are the Cavalry
Podcast cover art by Kilochko Daria
Episode 2 SN: You are the Cavalry
Many women approach pregnancy, and especially the birth of their children, as a sacred moment, as something they’ve long contemplated before it arrives. And with these thoughts come expectations. Such was the case for my guest today. For all three of her children’s births, she’d imagined a natural birth, with both the pain and the sense of triumph that experience involves. But circumstance got in the way, once, twice, all three times. Despite the challenges she faced, including peripartum depression, she found some significant ways to square the difference between expectation and reality, and when she couldn’t find them, she created them. Using her experience as inspiration, she co-founded the Omaha Better Birth Project, to help give women the birth experience they imagined. For more about her non profit, see: https://omahabetterbirth.org/
Resources mentioned in this episode
Emily’s website with parenting advice
https://www.thecrispyfamily.com/
Accuracy of ultrasound
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5810856/
Foley bulb
https://www.medicalnewstoday.com/articles/322956#procedure
https://www.healthline.com/health/pregnancy/foley-bulb-induction
Perinatal depression
https://www.nimh.nih.gov/health/publications/perinatal-depression/index.shtml
Prodromal labor
https://americanpregnacy.org/healthy-pregnancy/labor-and-birth/prodromal-labor-25779/
https://webmd.com/baby/prodromal-labor/overview#1
https://www.ccjm.org/content/84/5/388
Cleveland clinic article on post partum depression
https://www.ccjm.org/content/ccjom/87/5/273.full.pdf
ICAN
My conversation with the therapists from family tree wellness:
In the body of the podcast, I included an excerpt of the conversation I had with the therapists from Family Tree Wellness that was directly relevant to Emily’s story. But I had a longer conversation with them about a variety of issues that come up in a women’s reproductive years, and everything they say is worth your attention. For our extended conversation, see:
For more about these therapists see:
https://www.familytreewellness.org/
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 went from struggling with “secondary unexplained infertility” to managing a triplet pregnancy…