Description: Jennifer is a mother to four children. Her fourth child is her daughter, Alyssa, who came into this world with all of the surprises. She was a surprise pregnancy for her parents and came with a very surprising diagnosis of a Giant Omphalocele, which was discovered during the very first ultrasound to determine her gestation! Tune into this episode to hear how Jennifer listened to her intuition and kept standing strong to finish her pregnancy while doing a lot of research on what was to come.
birthasweknowitpodcast.com/86
Disclaimer: This podcast is intended for educational purposes only, with no intention of giving or replacing any medical advice. I, Kiona Nessenbaum, am not a licensed medical professional. All advice that is given on the podcast is from the personal experience of the storytellers. All medical or health-related questions should be directed to your licensed provider.
Want to hear another birth story that involved an unexpected diagnosis? Check out one of our more recent episodes: 84-Maddie & Macka Palmer-1 Birth-Cesarean-Preeclampsia-Cystic Fibrosis-NICU-Maya
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Transcription of Episode 86:
Intro 0:08
Welcome to Birth As We Know It, a podcast that is dedicated to recognizing the many different ways that birth unfolds. I am your host, Kiona Nessenbaum. I have experienced birth as a doula, a student midwife, a birth assistant, and as a mother of three amazing children of my own. After attending over 140 births, I’ve realized that each birth experience is truly unique. So make sure you subscribe and join me as we are guided through many different birth experiences through the lens of the storyteller. Please be aware that some of these stories can be triggering to hear. So feel free to pause, take a breath, and come back and listen whenever you’re ready. With that said, let’s prep ourselves to dive deep and get detailed about what really happens in the birth space.
Disclaimer 1:05
As a reminder, this podcast is intended for educational purposes only and has no intention of giving or replacing any medical advice. All advice that is given on the podcast is from the personal experiences of the storytellers. All medical or health-related questions should be directed to your licensed provider.
Doula Promo 1:26
Before we dive into this episode today, I have an exciting announcement. Your girl, Kiona Nessenbaum, is back in the birth space as a birth doula. So if you are local to the greater Seattle area and in need of some birth doula support, please reach out. I would love to support you as you transition into parenthood. To learn more about this service, you can go birth as we know at podcast.com forward slash doula. Another service that I’m offering is called labor prep from a doula perspective. Now this can be done virtually or in person. So it’s also available to those that are not local to the greater Seattle area. What this is, is a two hour info session where you and I connect and talk about the best ways to prep for your labor and to inform you of what your options are. We also touch on how you can cope throughout labor, how partners can support you as you are laboring, and we touch on postpartum. So if you want to learn more about this service, go to
birthasweknowitpodcast.com forward slash labor prep. All right, let’s dive into this episode.
Kiona 2:32
Hello, everybody. And welcome back to the Birth As We Know It podcast. Today, I’m excited to be interviewing Jennifer Hand, who is going to be talking to us about the birth of her daughter, Alyssa. And Alyssa is her fourth child, but things were a little bit different this time around because Alyssa was born with a condition called giant omphaliceal, which is when a baby is born with organs exposed through their abdominal So Jennifer, welcome on and thank you for helping us learn about this today.
Jennifer 3:05
Thank you for having me on. I’m so excited to talk about it.
Kiona 3:09
Yes. Yes. So of course this is a birth story, birth experience podcast. So we have to start from the very beginning. Alyssa is your fourth. So was Alyssa planned? Was she surprised? Tell us all the things.
Jennifer 3:22
So Alyssa was not planned. She was a I had three children that were all under the age of eight they were seven, five, and Was not planning to have a And I found out that I was pregnant.
Kiona 3:37
Awesome. So what were your emotions going through that surprise pregnancy
Jennifer 3:43
I was actually quite shocked. It took me a little bit to accept the fact because life was already very busy with three young children
Kiona 3:52
Hmm. Yeah. I have three, so I totally get that. And so was Alyssa’s pregnancy different for you at all? And if so, how?
Jennifer 4:03
There was nothing about the pregnancy itself that was different other than when I went in for the ultrasound, because I really had no idea exactly when I became pregnant, or what the dating was of when she would be born. So I went in for the ultrasound. And that was when we learned about this condition. And that was somewhere around eight
Kiona 4:26
That is so early to find out about this condition. So what did they see in your ultrasound that said that this condition was going to be happening?
Jennifer 4:37
Yes, it was shockingly early, I thought you know how when you do the ultrasound, and one person is looking at it, and then they slowly get kind of quiet? and don’t say much. And then they walk out, and they have somebody else come look at it. And then they go out and talk about it. It was that kind of thing, where multiple people were coming in the room and looking at it. So it was obvious something was wrong, but nobody would tell me it took a while for them to finally say what it was, but they knew exactly what the condition was. And they said that her abdominal wall did not connect. They said she would not And they just told me right there, I needed to end the pregnancy.
Kiona 5:20
So hearing that, what was going through you, your, and your husband at the time minds? Like, what were you guys thinking when they told you that?
Jennifer 5:29
I didn’t know what to think. Actually I, am a firm believer that all life is important, and I wasn’t going to end it. So that was my personal; decision. And I told them that right away that no, I didn’t want to end it. And please don’t mention it again. And they respected that. But they made it very clear that there was little to no chance that this baby was going to survive They went through all the options. They said if she did survive birth, food would not pass through They just went through a long list of the issues that could happen, all the different ways that she could possibly not survive.
Kiona 6:08
I can only imagine how scary that sounds
Jennifer 6:12
It was incredibly scary And I can’t really explain why. I was just bound and determined have the baby because I felt that even if something was wrong, I was willing to take care of her. I was willing to protect I just wanted to do the best that I could as a mom.
Kiona 6:31
yes, yes. And when you got this information that she had this condition at the time of that ultrasound, is that when they measured or did they just know that the condition what’s going through that?
Jennifer 6:44
The condition, it already happened. They already saw it there. And they did label it as a giant omphalocele. They considered a giant omphalocele based on the size. Somehow, before 10 weeks, they were able to tell the size that it was unusually large and that it was going to be giant, meaning involving all of her organs and her whole abdominal I don’t quite know exactly how they measure that when it’s that little. I don’t fully understand that, but they knew right then.
Kiona 7:15
Okay. once they told you that information, what was your next step as parents to move forward with your pregnancy? What was the next thing you did?
Jennifer 7:25
So I am a planner and I’m a researcher. so for my mental health, I guess I felt like I needed to research the condition as much as possible. I did a lot of reading. I just scoured everywhere I could to find information about the condition. And back then, because we’re talking 20 years ago, it was very difficult to find information. I think it’s a little easier nowadays, but back then it was very hard to find information. But I felt like the more learned, the better I would be able to deal with it once she was born. I just like to know all the possibilities of what could go wrong or how to deal with it. So that’s why I spent a lot of time reading and researching.
Kiona 8:11
That makes total sense because with it being something that you have not come across before, you’re like, I want to know all of this information, like, I have to absorb the information in order to be able to care for this So to absorb all of that and to educate yourself in that process is super important and really beneficial in the long run. So were there any specific procedures that you did in addition to just having, like, going about your period of the pregnancy?
Jennifer 8:39
the only other thing that I did was I was told if she did survive and most everyone was convinced she wouldn’t, even the high risk group of doctors that I was working with. they said if she did survive, I needed to be ready and prepared for surgery immediately. So they connected me with a surgeon and I did meet with him while I was pregnant to talk about the condition and how to deal with it.
Kiona 9:04
Okay. Yes. And so usually what’s the plan that follows pregnancy if survival is there?
Jennifer 9:12
So back then, 20 years ago, the plan was always to do surgery and the survival rate was incredibly low because their little bodies are just so small compared to literally all of her organs were in pile, in a sack on top of her belly. It was just a big bubble on top of her belly. And typically, babies didn’t survive that. And in all of my research, I did find two stories of children that did survive with a giant omphalocele. And in both of those they waited for a long close to a year before had surgery in order to give their body a chance to grow to handle the trauma of surgery. And so that was my plan. And that’s what I wanted to basically beg the surgeon to do when I went in to talk to him. And when I went and met with him he basically sat down before I said anything and told me, I don’t know how you feel about this, but I would really like to be conservative and wait as long as possible to have surgery. And I was just completely amazed. I felt like that was a sign that this was definitely the doctor that I had to work with.
Kiona 10:29
Oh, I think that’s so great that he said that to you and that’s what you were going to ask
Jennifer 10:34
Yes.
Kiona 10:35
Oh, I love that so much. So because of this condition, you can’t have a vaginal birth
Jennifer 10:42
Correct. The sac on top of her stomach and it was covered only by the very, very thin membrane that’s around the umbilical cord. It was clear so you could see everything through it. there’s no way her body could go through the vaginal canal without it smashing or bursting or something because it protruding so far off of her stomach. So I didn’t have an option. It had to be cesarean.
Kiona 11:05
yeah. And you had mentioned in your guest request form that you had three healthy vaginal births prior,
Jennifer 11:14
I did. Yes. I had three vaginal births and they all went fairly smoothly. I did have an epidural with one child that was rather large. but other than that, the births were completely unremarkable. They went very smoothly, but I was not given an option with this. It had to be a cesarean section.
Kiona 11:32
Yeah. Because at this point it’s life or death. So theres no trial of labor or anything like because they want to be in control of the compression that this baby endures. So how did you guys go about starting that cesarean procedure? Did you schedule a day that was early or was there a specific time in your pregnancy that they scheduled it forward to prevent that potential of labor?
Jennifer 11:58
They scheduled it. If I recall, approxim a week before I was due. And I don’t know how they made that decision. perhaps because she was my fourth and I’d already had a bit of a history of having babies and I never had one early. they were usually right on time or a day after or so they felt like it was safe to schedule the cesarean about a week before the due date.
Kiona 12:25
Yeah. So how did you prepare yourself mentally to go through a cesarean? Even though it was a requirement, it’s still your body going through this procedure?
Jennifer 12:33
That’s a good question. I, don’t think I did much to prepare myself for the cesarean. And, I really wish I would have done more. I don’t feel like anybody gave me much information of what to expect and what it was going to be like. I know many, many women go through it. My experience was that it was much, much, much harder it was more painful. It was more difficult afterwards because my body had to do so much work to heal. I didn’t feel like I had the energy care for my kids or take care of the baby. It hard for me. And I wish that somebody had kind of given me a little bit information. So I was prepared for that.
Kiona 13:13
Yeah. Because having three children. So by the time Alyssa was born, how old were your former three?
Jennifer 13:20
they were seven, five, and three.
Kiona 13:23
So very active ages.
Jennifer 13:26
Very, very.
Kiona 13:28
So because of this, well, before we dive too deep into postpartum with Alyssa, I want to ask you a
day of her birth. So what did it look like when you went in for cesarean? Because it was scheduled. like how quick was it? did you get to do skin to skin? Or was she automatically to the NICU? Like all those details would be great.
Jennifer 13:50
I don’t think it was very different from any other cesarean. it was scheduled for late in the day. I don’t quite know why it was scheduled 4.30, 5 o’clock, very, very late in the day. I think that they wanted her to be the last one or something for some reason. But, the the actual surgery itself was hard for me. They said I wouldn’t feel pain, but I felt so much pressure and it just feels like they’re grabbing your insides and pulling them out. And so I guess I kind of freaked out a little bit and I told them that it was very uncomfortable and I felt all of the tugging in my stomach. And as soon as I said that, they said that she was out and then they pretty much knocked me out.
Kiona 14:32
so they put you under
Jennifer 14:34
Yes. And then when I woke up, I was over in another room and they basically said that it would take maybe a half hour to feel my legs and for my legs to start moving again. And they took the baby to the NICU, the newborn ICU. And they said, as soon as I was able to feel my legs again, and I could get up and get into a wheelchair, they would take me down to see her. And I waited and waited. A half hour came and went. I couldn’t feel my legs. It took about two hours before I could feel my legs again.
Kiona 15:05
Mm.
Jennifer 15:06
then they let me go into a wheelchair and go down to see her. So that was really hard to not see for a couple hours, but they did. There was no skin to skin and they didn’t let see her or touch her. And even when I went down to the NICU, I don’t think they let me put my hand in and touch her as far as I recall. It wasn’t really till the next day that I got to touch her.
Kiona 15:28
I can’t even imagine just the emotions that are flooding through you at that time. Because you feel a little helpless.
Jennifer 15:36
Yes. I felt so And the entire process with the cesarean, I felt very out of control. I felt like I could only do basically what they told me to. I didn’t have much say in any of it.
Kiona 15:49
And that’s hard. And that’s so interesting for me. And I’m sure it was for you as well, because this postpartum experience is drastically different than the experiences that you’ve had with your former.
Jennifer 16:02
Oh, yes. Yeah. With every other child, as soon as the baby came out, they placed it on my chest. I was able to hug them and kiss them. And, you know, you go through all of that work and it’s like you see the reward and it feels so good. And I did not have that with Alyssa. Unfortunately, I had to wait till the next day before I could even touch her. So I spent a lot of time sitting there staring at her.
Kiona 16:26
when it came to feeding Alyssa, what was different?
Jennifer 16:31
So I had to pump, and they took my breast milk. I had to store it in containers for the nurses so that they could feed it to her. They highly encouraged me use breast milk because of the condition and because of the difficulty thinking it would be healthier for her. that was hard for me because, I mean, my other three children, I was used to nursing immediately and I had to start out with a But I was not able to hold her and nurse her for a little myself. I just had to pump and give the milk to the nurses. And I think the first time I got to hold her and actually nurse her myself was about a week and a half or two weeks after she was born.
Kiona 17:17
That is a long time for that first skin-to-skin contact, mouth on
biology transfer kind of thing.
Jennifer 17:28
Yes.
Kiona 17:29
because of how different this postpartum has been for you at this point in your story, did you find yourself experiencing any kind of postpartum depression or anxiety?
Jennifer 17:40
That’s a good question. I think that did have a lot of postpartum anxiety, but honestly, I was just so incredibly busy. was always looking at the next thing I had to do. I just had to keep moving. There was so much to do. The hospital was an hour away. I had to pump my milk. I tried to get to the hospital every day. I tried to feed her myself and hold her as long as I could. I wanted her to know that I was her mom and not the nurses.
Kiona 18:09
Right.
Jennifer 18:09
So it was just a lot and just constant moving. So even though I think I felt a lot of anxiety, the fact that I was so busy was probably good for me and just kept me moving.
Kiona 18:23
And how long was Alyssa in the NICU?
Jennifer 18:26
She ended up being in the NICU for, little over a month before we took her home home. They were expecting her to stay for several months, but because I came in every single day and they watched me feeding her and they watched me handling I had to hold her very flat. I couldn’t turn her body
towards me. kind of the way you would nurse a baby. And i had to kinda hold her laying flat sraight up and after observing me so much, they thought that I was handling it well. They said that we could take her home. And they said that she couldn’t go outdoors, that I had to stay in the house until her surgery, basically. So I did bring her home. So I did bring her home and we basically had to take care of this sack on her stomach by putting betadine on it like four or five times a day as the slowly started to kind of harden and heal over and skin grew up the sides of the sack. So that was all we could do in the beginning was just wait for the first year.
Kiona 19:30
Because I’m thinking of what people take for granted so much was just being able to put their baby in a car seat, to be able to buckle a seatbelt around their baby. And you could not do that. did you have to transfer her by holding her in the car? Or did they give you a kind of like one of those flat car seats, like the bed ones?
Jennifer 19:50
No, they didn’t do that. We ended up improvising everything ourselves. Honestly, I don’t know if we did it 100% correctly. We did the best we could. But I remember with the car seat, it had kind of the buckle that goes over their chest and we had to basically push that up a lot It wasn’t all the way up to her neck, but we had to push it up a lot higher. And then the straps that went down kind of over her legs, we had to, it had to stay separated around her stomach and it really, we could have nothing going directly over her stomach. So we were able to make it work. We had to loosen up all the straps and kind of just try to hold her in the way that we felt like was best.
Kiona 20:31
Right. Yeah. Best and safest for what you
Jennifer 20:34
Yes.
Kiona 20:34
could do. Yeah. Oh, man. And so because she had her giant, um, fallaceal, you couldn’t have her belly to belly, did you still do it across or was there kind of more flat football holds kind of situation?
Jennifer 20:47
I held her flat. Well, actually, let me back up and say that because the nurses were giving her bottles of my breast milk. I did give her bottles occasionally when I was in the hospital. That was just a lot easier. And I wanted, I didn’t want her to get confused between the both of them. And so I did also give her my breast milk in the bottles. But then I slowly transitioned her to nursing from the breast. And I basically held her flat across my stomach. And she really craned her neck to the side, um, in a way that probably does not look comfortable. And, but she was able to do it and she did it very naturally she latched on just fine. She seemed very eager to nurse. So it, it felt like it was okay, even though it looked like her neck might’ve been craned too much to the side. She seemed to be able to get the milk down well, and we just kept going that way. So that was basically how I nursed her from then on.
Kiona 21:46
wow. Okay. the thing that was most surprising to me, and you’ve already stated it here,but when I read it in your guest request form was that you waited a full year to do surgery, which means her abdomen was exposed this entire
Jennifer 22:01
It
Kiona 22:02
time.
Jennifer 22:02
was.
Kiona 22:02
So that’s a long time to adjust. And then I’m curious to hear how her siblings, interacted with her throughout this first year.
Jennifer 22:14
Well, they knew right away that something was different. And we taught them from the very beginning that they had to be very careful. Like I said, they allowed us to take her home, but they said she had to stay in the house. So we did not take her out anywhere that first year. And the kids got very excited about sitting on the sofa and holding her or, you know, we’d put her a little baby chair, and they would just sit next to her and talk to her. So they handled it all very, very well. They loved playing with her in any way that they were able to. And it was a whole year. So she never learned how to crawl. because she couldn’t really be on her belly, but she did start sitting up. And when she sat up, she slowly learned how to kind of scoot her butt forward to get from place to place.
Kiona 23:01
Mm.
Jennifer 23:02
So that’s what she did for many months. She would just scoot, scoot on
Kiona 23:05
Mm.
Jennifer 23:05
her butt to get places. And she did learn how to crawl after she had the surgery. So
Kiona 23:11
Yeah.
Jennifer 23:11
for a full year though, it was actually very cute to see her scoot around. And as as the amphalocele, as the skin grew up around it, and as the top of it started to kind of heal over, we slowly started to add an ACE bandage around her stomach. And we had to tighten it a little bit tighter every day to slowly start pushing the organs back into her abdominal cavity and to get her body used to that feeling before the surgery. So that process started probably two months before surgery. And it was very hard because her legs turned blue and it was, she cried and it was a very difficult process to go through. But over the months could see the bumps starting to flatten down and, get pushed back into her body.
Kiona 24:04
Yeah. Oh my goodness. I, I’m just trying to imagine what it would feel like being her in that moment,
Jennifer 24:12
I know.
Kiona 24:12
because having that pressure, like people loosen their genes when they eat food, right? Cause they’re
Jennifer 24:19
Right.
Kiona 24:19
bloated. And
Jennifer 24:20
Right.
Kiona 24:21
so literally her entire, all of her organs are out of her body. And then, so she’s having that constant pressure of the band against her getting tightened just a bit every day. And at that young age, she doesn’t understand why she doesn’t understand why she’s just like, this hurts. Like I,
Jennifer 24:38
Right.
Kiona 24:38
this is too much. This is a lot. I’m fussy. My legs are turning blue, losing circulation, you know, all of that. Oh, I mean, I, she’s awesome. I can’t even, that’s
Jennifer 24:52
It was, it was
Kiona 24:53
crazy.
Jennifer 24:53
painful for me. I cried
Kiona 24:55
Yeah.
Jennifer 24:55
a lot as I did
Kiona 24:56
Mm-hmm.
Jennifer 24:56
it, but I also knew I didn’t have an option and we had to somehow get her body used to it. We had to somehow slowly push these organs into her body. And I probably went a little bit slower than the doctor wanted me to, because it was very hard for me to tighten it a little bit more and a little bit more, but it was very encouraging to see the change over time. And to see then when I would take the bandage off, her body stayed that way. It’s not like everything popped right back out, you know, as it slowly started pushing back in, it stayed, it stayed in there, which was good. And then she just had all this extra skin and everything. So it did make the surgery so much easier.
Kiona 25:45
And it was probably nice to also see that result as you were continuing to put the ace bandage around. You’re like, okay, I know this is hard. I know this is hard for both of us. You’re crying. I’m crying. But it’s working.
Jennifer 26:01
Yes.
Kiona 26:01
Yeah. Oh, goodness. So one question is, when she started eating solids, did you have to do that differently?
Jennifer 26:12
No. At that point, I would have her in a bouncy chair or sitting up at that point, and I could just feed her with a spoon. It was no problem. And she did. We knew right when it happened, when she was in the NICU, right after she was born, I’m sorry, when she was in the NICU, they did not think that food was going to go through her system. So when she had the first bowel movement, there was so much celebration. It
Kiona 26:39
Oh,
Jennifer 26:39
was just
Kiona 26:39
yeah.
Jennifer 26:40
like, wow, things are going through her, and everyone was amazed. So as soon as we knew things were going through her, we knew that feeding would be normal and be fine, and we could feed her normal foods.
Kiona 26:52
That is so awesome. And I would be celebrating, too. That’s
Jennifer 26:56
Yeah.
Kiona 26:57
a big accomplishment.
Jennifer 26:59
It really was. And especially because so many people told us it wouldn’t be possible and it wouldn’t happen. And it did. And we were just jumping for joy. Yeah.
Kiona 27:08
Yeah. there any concern that she would have trouble digesting any specific foods since her organs were out of her body? Like, yes, the food is going through, but were they concerned about the process of digestion for her at all?
Jennifer 27:21
Not really. There was concern about her organs overall and that they would all work properly and not have any damage. There was concerns about is her liver okay? All the different organs, you know, all the different organs if they were damaged or working normally, which we couldn’t really tell. It just would take time. She had blood tests and things like that, and all of that came out normal, so it was just a process of watching her to make sure that it seemed like everything worked properly.
Kiona 27:51
Yeah. Okay. All right. So let’s jump forward to her surgery. What was that like for you guys?
Jennifer 27:59
So that was hard as anyone who has a baby that you bring into surgery. It’s just hard to – the thought of putting a baby under anesthesia and just trusting that it’s going to go smoothly.
Yeah. So I was very emotional, and it was a really hard day. And at that age, and at that age, realizing she doesn’t understand what’s happening and what’s going on. So it was a long day, and it was a hard day. And honestly, I don’t even remember how long the surgery thinking back on it. But it was a fairly long surgery. I know it was several hours before we were able to go back in and see her. They did reserve space in the ICU for her again after that surgery, but the surgery went so smoothly and so well that they didn’t think she needed to go into the ICU. And when we went in to see her, she was just smiling. She sat up and looked at us, and it was completely amazing. She just – she just breezed through like it was nothing. With this giant scar down her stomach, she just seemed happy as can be.
Kiona 29:13
hearing
that when you walk in, she’s smiling and
Jennifer 29:21
Yeah.
Kiona 29:21
just like, hey, I’m okay, mom. Like, oh, that sounds so beautiful. I love
Jennifer 29:27
It was.
Kiona 29:27
that. I love that. And so was that the only procedure that she had to get?
Jennifer 29:33
Yes and. the surgeon did say there was a chance she would need multiple surgeries, but everything went smoothly. The compression process worked so well that everything went inside normally to the point where they were able to close the abdominal muscles. So the biggest concern was her skin and doing a skin graft. But because we waited so long, enough skin grew up along the sides of the omphalycele that she did not need a skin graft. So that was wonderful.
everything seemed to be working properly once it was pushed back inside. They told us that her organs were not placed where everyone else’s organs are,
Kiona 30:14
Mm-hmm.
Jennifer 30:14
but that that wasn’t a concern.
Kiona 30:25
Yeah. Just kind of let them settle where they settled.
Jennifer 30:28
Right. Exactly. So her heart is a little bit lower than most people’s. They did say if she were ever to have appendicitis, for example, she would probably have pain somewhere different than other people. So we just had to be
Kiona 30:39
Mm-hmm.
Jennifer 30:39
really conscious as she was growing about any unusual pains or feelings that she had in her abdomen.
Kiona 30:46
Mm-hmm. And so did they give you like an x-ray of like the locations of where her organs are kind of sitting so you can keep an eye out for that? Or was
Jennifer 30:55
Um,
Kiona 30:55
it?
Jennifer 30:56
I remember, yes, we did look at an x-ray, but but basically they were saying if anything were to happen and it was an emergency situation and she had to go a hospital, any doctor would be able to look at her stomach with a giant scar down it and see that she had major abdominal surgery and basically assume that her organs were probably not in the
Kiona 31:17
Mm-hmm.
Jennifer 31:17
same place as everyone else. By having that giant scar, chances are good that things were.
Kiona 31:24
Correct. Yeah. They’ll have to do some extra research on
Jennifer 31:26
Right.
Kiona 31:27
or just pay closer attention.
Jennifer 31:29
Right.
Kiona 31:30
Yes. Oh, man. So, for the listeners, I think it’s cool to say like, how old is she now?
Jennifer 31:38
Actually, she just turned 22.
Kiona 31:40
Yes. So, she is thriving.
Jennifer 31:43
She is thriving and she is a nurse. She just graduated. She just pressed her NCLEX and eventually she hopes to work in a NICU.
Kiona 31:54
That is so cool. Just coming full circle.
Jennifer 31:57
Yeah. It’s absolutely amazing. the whole thing just really amazed me. And I’m so proud of her. And she was such a sweet, beautiful baby. And the fact that so many people told me to end it and then look at where she is now. It just. I’m so glad that we did what we did.
Kiona 32:16
Yes.
Jennifer 32:16
The doctors said that the only thing that we really need to be concerned about is chances of her body being able to carry a child. They just didn’t know for sure if that was going to work out. And so. We don’t know yet what’s going to happen. And it would be safer for her not to get pregnant and
Kiona 32:34
Mm-hmm.
Jennifer 32:34
not to kind of put her body through that.
Kiona 32:37
Mm-hmm.
Jennifer 32:38
But we don’t know what’s going to happen yet at that point.
Kiona 32:40
Right. Yeah. That was actually a question that I had because thinking of like organ placement and organ development and with having such an invasive surgery at such a young age, with it being very traumatic to the body. And, of course, there might be the option potentially. I don’t even know if they would say for her to like do an egg retrieval. Like, would that be harmful for her? Is that different if she were to use a surrogate with her You know, something along those lines. So,
Jennifer 33:09
Right. Yeah.
Kiona 33:10
yeah.
Jennifer 33:11
Currently, her plan is to have her sister carry her baby someday.
Kiona 33:14
Love that. Love that.
Jennifer 33:16
That’s what they’ve talked about her whole life growing up. They’ve made this agreement between the two of them.
Kiona 33:21
Beautiful. I love that. That is a sisterly bond for sure. Oh, yeah. That’s great. with her being the youngest, how was it, after the surgery took place, when it came to her bonding with her siblings? Was she able to like play with them more, a little bit more aggressively? were they okay with that? Or was it more of still always being a little bit careful?
Jennifer 33:40
I think that her brother and sisters probably were always a little bit more careful with her. While she was growing up, just because of all that she went through. It wasn’t like they treated her like glass, like she couldn’t do anything. They would still get on the floor and kind of play around with her. But they, they always treated her a little bit more careful. I think they really bonded well early on though. And I’d have to say all three of her siblings were very intentional about spending time with her every day and sitting and playing with her.
Kiona 34:10
Hmm. Yeah. I think that’s
Jennifer 34:12
I
Kiona 34:13
awesome. Yeah. Yeah. And so, going back to her surgery time, what was her healing process like?
Jennifer 34:21
The healing actually happened pretty quickly. it was, it was, it was really just the giant scar on her stomach in terms of the abdominal muscles. They did sew them together. They said that there was a chance at some point that the stitches would kind of poke out and we would need to kind of pull out these stitches. And that never really happened. So it was really just healing the, the scar and it went pretty smoothly, pretty quickly.
Kiona 34:54
Y. I’m wondering about the care. Did it feel like a little bit of a relief to not have to do all of the cleaning and ACE bandages and everything? Or did you still have to put an ACE bandage or anything like that?
Jennifer 35:06
No, it was, it was much easier after the surgery. The care did not require nearly as much as when it was just that clear sack. You could literally see her organs through the sack before.
Kiona 35:20
Right.
Jennifer 35:20
So it was so much easier after she had the surgery.
Kiona 35:24
Yeah. I think that’s awesome. And I also think it’s awesome how the benefit of waiting gave the opportunity for skin to grow so you didn’t have to worry about skin grafts. And it gave her body the ability to like just be a little bit bigger. One year old is still tiny. You know, it’s still a tiny human. But that’s way better than hours old or a day old.
Jennifer 35:44
It really is. thing I was most excited about through the whole process
the doctor that she had, was really at the time considered a specialist with omphalocele. He would go and speak at conferences specifically about giant omphaloceles. And so he talked about her case and showed pictures and things like that when he would go to these conferences. And before that point, so many children didn’t survive. And even the nurses in the NICU told us that they had only seen two babies before with the condition and they didn’t make it.
Kiona 36:18
Hmm.
Jennifer 36:18
So I know that before that point, they just medically thought it looked so horrific that they had to take care of it immediately. And so it just took, it took somebody who was brave enough to say, no, let’s wait for a little bit and let’s see what happens. And if no one had ever done and made that decision, there’s so many more babies who wouldn’t have survived. Now it’s more common to wait because they realize that’s better for their So I’m just so thankful, you know, that they, that somebody was willing to be brave enough to make that decision.
Kiona 36:53
Yeah. Yes, I think so. And I also imagine your daughter in the NICU as a nurse coming across the same condition
Jennifer 37:03
Yeah.
Kiona 37:03
and reassuring the family, it’s okay. This was me.
Jennifer 37:06
Yeah, exactly. Exactly.
Kiona 37:09
Yeah. Oh, that’s going to be so full circle one day,
Jennifer 37:12
It will.
Kiona 37:13
which is just awesome.
So, I love this story because it’s so uncommon to hear. And if there’s anybody out there that is listening to this, that is dealing with this condition, what would you tell them?
Jennifer 37:32
I would tell them, first of all, don’t, don’t listen to the first thing that you’re told and assume that that is the gospel truth. Definitely get, get more opinions, talk to more people and do research, do your research. I spent so many nights reading and reading and researching to try to find more information. And it took me a while to find the stories of the few babies that I found. I would just say, really try to collect as much information as you can.
Kiona 38:07
I think that’s great. That’s a great idea. And especially since there is more information out about these now, the giant omphalosials, and to know that there are a lot more success stories
Jennifer 38:21
Yes.
Kiona 38:22
Okay. So I think that this is a good place to kind of round off this interview with my final closing So if you could describe this birth experience with one word, what would it be?
Jennifer 38:40
With one word, I would say
supernatural,
Kiona 38:44
Hmm.
Jennifer 38:44
maybe, I
Kiona 38:45
Yeah.
Jennifer 38:45
think would be the word I would use to describe it.
Kiona 38:48
Yeah. Yeah. My next question. My next question is what is one resource that I can share with listeners
Jennifer 38:55
Yes. So in my case, when I was searching back then, I came across a web page called Mothers of Omphalocele. It was
M-O-O-S, moose. And so it had little cows all over because it was
moose. Back then it was a website. I believe today it has now switched to become a Facebook group, but it is still going on. And it’s just moms who have all dealt with the condition. Some of the children survived, some didn’t, and they are all open and sharing their stories. And it’s super encouraging and supportive for anyone in this situation.
Kiona 39:39
Love that. I love that so much. Now, I absolutely cannot end this interview without telling you that you are absolutely amazing for sticking to your intuition and following your gut and being a strong willed mother to say, no, no, no, I’m keeping this baby and we’re going to figure it out. So I think that is so awesome.
Jennifer 40:02
Thank you. I think we all have that inside as moms. We all have that feeling of what’s the best thing to do our babies.
Kiona 40:09
Mm hmm.
Jennifer 40:10
And we need to just trust that instinct we don’t follow it.
Kiona 40:13
Yes. Yeah. And I’m still going to give you even more praise because yes, following the instinct is true, but you were one of the rare ones that had to do a lot of the research on your own and to trust that the doctor that you chose knew what they were doing. And of course, that alignment right in the beginning with the we’ll wait a year is
Jennifer 40:34
Yeah.
Kiona 40:35
wonderful.
But you did a lot of advocating and I think that’s great. So now you have a beautiful daughter.
Jennifer 40:42
Yes.
Kiona 40:43
Yeah.
Jennifer 40:44
Well, thank you. Yes. I’m
Kiona 40:45
Yes.
Jennifer 40:45
I’m I feel very blessed.
Kiona 40:48
Yes, absolutely. Well, thank you so much, Jennifer. Thank you so much for coming on the birth as we know it podcast and helping educate all of the listeners about giant amphaloceles.
Jennifer 40:58
Thank you, Kiona. Thank you for doing this. I feel like what you’re doing is such an important, important thing.
Kiona 41:04
Yes, absolutely. Absolutely.
Outro 41:19
Okay, raise your hand if you learned something new today while listening to this episode.
My hand is all the way up in the air because Jennifer taught us so much about giant emphaloceles and I think that it’s so amazing that she had a successful story and that her daughter Alyssa is becoming a NICU nurse. Like, how amazing is that? Jennifer, thank you so much for sharing your story with us and Alyssa, thank you so much for going into the health field and helping others so that you can potentially meet someone that will close the entire circle and you can support a family that is going through this as well. If you enjoyed this episode, feel free to go to birthasweknowippodcast.com forward slash 86 to look at the show notes as well as the beautiful pictures of Alyssa and Jennifer.
If you’re intrigued about medical situations that are slightly different, I suggest you listen to one of our more recent episodes, which is episode 84 with Maddie and Macka Palmer, where they talk about their experience with their daughter Maya being diagnosed with cystic fibrosis. And to all of your listeners, thank you so much for making it this far and learning with me, and I will talk to you all again soon. Bye for now.
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