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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

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