“Pregnancy with Omphalocele: a complicated birth defect”– with Charlotte Hurley

Dr. Fox: Welcome to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman Podcast.” I’m your host, Dr. Nathan Fox. “High Risk Birth Stories” is a podcast designed to give you the listener a window into the life-changing experiences of pregnancy, fertility, and childbirth.
Charlotte, thank you so much for volunteering to come on the podcast to tell your birth story. How are you doing today?
Charlotte: I’m doing well, how are you?
Dr. Fox: I’m good, thank you. We’re talking about the birth of your son Matthew in 2014, yes?
Charlotte: Yes, that’s correct.
Dr. Fox: He’s gonna be seven in a few months I believe?
Charlotte: Yep, day after Thanksgiving.
Dr. Fox: Tell me how did you find our podcast originally?
Charlotte: I found it through Emily Oster’s newsletter.
Dr. Fox: We have several listeners join us from her so, thank you Emily for that. I do think that there’s a lot of overlap between what she’s doing and what we’re doing, it’s part of the reason she and I get along so well. I think that we have very similar missions so to speak. And I think that a lot of her listeners like me and my listeners like her, and it’s wonderful. So, if you’re a listener to the podcast and don’t know who Emily Oster is, she’s been on our podcast, on the “Healthful Woman Podcast” several times, and you can also Google her, she is wonderful. An author, sends out a newsletter, has a lot of stuff online. So tell us, we’re talking about the birth in 2014. So, presumably, you got pregnant somewhere around the beginning of 2014. Take our listeners back to that time, where you were? Where you were living? What’s your story then coming into pregnancy?
Charlotte: So in 2014, I was 21, and I was married to my husband, he was in the Air Force, my first husband. And we were really, really, really excited to be pregnant because I had a miscarriage about two years earlier and we had been trying to get pregnant since then.
Dr. Fox: And where were you guys living?
Charlotte: We were in Arizona, Phoenix, Arizona.
Dr. Fox: And at the time, that’s where he was stationed or he was active at that time?
Charlotte: Yeah, he was active. That’s where he was stationed.
Dr. Fox: Did he have to go overseas at all?
Charlotte: No, it’s a training base, so he never was deployed.
Dr. Fox: And you lived on the base with other military families or you lived off the base and he commuted in?
Charlotte: We lived on the base.
Dr. Fox: What was that like living on the base as a 21-year-old? Is that something you ever thought you’d be doing? Do you have any, you know, military in your family?
Charlotte: My sister joined the military after I was married. But no, definitely not. Not something I saw myself doing. I never thought I’d be married at 21 but…
Dr. Fox: I got married at 21 as well, so it’s go figure. On the base, are there a lot of married couples, or families, or people having children, or is that unusual for the neighborhood you were in?
Charlotte: For the neighborhood, we were in I’d say it was pretty typical. There’s a lot of families there, and there’s a lot of like young families, and then there’s like the older there. I feel like there’s not that much in between, middle-aged with like older children, didn’t see a lot of that. But yeah, mostly people our age were starting to have children or like slightly older and had infants or toddlers.
Dr. Fox: And you mentioned that you were excited because your previous pregnancy was a miscarriage. Did that cause a lot of, you know, anxiety in the beginning of pregnancy that it might happen again or was the thought that it was, you know, for a specific reason or something and you were not really so concerned of it happening another time?
Charlotte: I was terrified the first, you know, part of it up until the anatomy scan. I was just so worried.
Dr. Fox: And was your husband worried as well, or do you have a similar attitude about that or was he less of a warrior?
Charlotte: No, he was so positive. Could not be more positive.
Dr. Fox: Did you find that helpful or terribly annoying?
Charlotte: Sometimes a little bit helpful, sometimes a little bit annoying.
Dr. Fox: That makes a lot of sense. And then how does it work when you’re on a military base? Is the medical care through the military, like you are going to like a VA hospital type, or a military hospital, or do they send you somewhere outside of the base?
Charlotte: So this particular base sends you out.
Dr. Fox: And so your doctors were not part of the Air Force or part of the military?
Charlotte: No. Like my regular OB was, and then once things got high risk I went to a high-risk doctor, because of the type of base it is, they don’t have like the emergency hospital and things that other bases have.
Dr. Fox: That’s decided the base of the number of people who are there, like the size of it, or, you know, what town it’s in, something of that sort?
Charlotte: I’m not sure. I think it probably has to do with the mission and how many people are there and things like that. Because like I said, it was a training base and that’s kind of my interpretation of why they wouldn’t have an ER or like a hospital, hospital.
Dr. Fox: So you’re very worried in the beginning of pregnancy because of the previous one, but how are you doing physically? Was it easier for you? Was it difficult for you? Did you have a lot of nausea? Or was it pretty straightforward?
Charlotte: I had a little bit of nausea. I found out because I was like throwing up, and I thought I had had a bad Subway sandwich. I was just freaking out, and I threw up and like, “I can’t believe I ate that.” Oh, he’s like, “You should take a pregnancy test.” But it was pretty easy.
Dr. Fox: When did the pregnancy become more complicated?
Charlotte: When I went for my anatomy scan, and I did it like the first day that they said I could do it, they’re like “Oh, you know your however many days.” And we had had an ultrasound, like a one early on because I have irregular periods. So they weren’t sure when I got pregnant. And it had been like a month and a half since I had had one. So, I knew I wasn’t that far along. But they weren’t sure and they wanted to know. So I had one earlier, so I knew, you know, that the baby was good, there was a heartbeat, like things were looking okay. So by the time I got there, I was just like, I was kind of past that anxiety. I was past the point where I had had the first miscarriage. And I was just really curious, super excited to find out the gender. And then I went to the anatomy ultrasound. And I remember they were like looking at everything, and they were like, “Oh, you know here’s the baby’s heart. Here’s the baby’s little hands.” And then it kind of looked a little bit weird but I didn’t know anything. So I was like, “Okay, cool.” And then the person was like, “I’m gonna go get the doctor.” And I was like, “That’s probably not good.”
Dr. Fox: Was that your understanding that you weren’t gonna see the doctor unless there was a problem? I mean, is it, you know, because you didn’t get this far along in pregnancy last time you said. So did you have any expectations of what it was gonna be like when you got onto the ultrasound table or did they say, you know, “I’m gonna do an ultrasound,” then the doctor is or they just sort of took you in and, you know, you don’t really know what to expect?
Charlotte: Yeah, so I went to the doctor, and then they sent me somewhere to get an ultrasound. And then it was my understanding I would go back to my doctor.
Dr. Fox: Meaning you thought that your doctor sent you to a center, they’re gonna do the scan, do the images, and then you’ll go back to your doctor and he or she would sort of say, “Hey, here’s the results. Here’s what they found. Here’s the baby size. Here’s the baby’s gender. Here’s…”
Charlotte: Yeah.
Dr. Fox: Oh, got it. Okay. So you didn’t think you’d be seeing a doctor that day in the ultrasound unit?
Charlotte: Yeah, and then they were like, “I’m gonna go get the doctor.” And I was like, “Okay, this is weird.”
Dr. Fox: Were you alone?
Charlotte: Yes.
Dr. Fox: You know about how many weeks pregnant you were at the time? Was it like 16 weeks or 20 weeks? People do anatomy scans at different times.
Charlotte: Yeah, I did it like the first day they would let me do it. I was just super excited, wanted to see, you know? I think I was about 16 weeks maybe and a few days.
Dr. Fox: So what happened when the doctor came in?
Charlotte: They came in and explained that he had an omphalocele. The explanation was like, not, I don’t think it was the reality of the situation. Because he was kind of like, “Oh, it’s like a hernia.” And I was like, “Okay, like that’s not that bad, you know?” And then they referred me to the high-risk doctor.
Dr. Fox: When you got the explanation they said that the baby has an omphalocele, which is obviously a word that no one in their life would ever have heard of otherwise because it’s not used in any context other than this point in pregnancy. And your understanding from the explanations it’s something like a hernia. Just looking back now to tell our listeners, what is an omphalocele? If you had to describe it now to somebody who’s never heard of it before, how would you describe it?
Charlotte: So basically, the intestines and sometimes other organs are in the baby’s umbilical cord, because whenever the intestine was being formed, it didn’t like twist correctly and go back in, you know, like close the way it’s supposed to. And then his small intestines and liver.
Dr. Fox: Oh, really. Yes. I mean, it’s basically there’s this big like gaping hole in the middle of the baby’s belly where the umbilical cord comes in, and all of his organs are sort of outside the body inside the membranes of the cord. It’s scary, obviously. And then did you eventually come to learn that between that visit and when you went to the high-risk doctor, like were you on Google and looking at pictures and this, or did you wait till you saw the next doctor to sort of figure out what was going on?
Charlotte: So I didn’t really think about it too much. Like, obviously, I was like anxious and worried, and like, but I kind of figured, you know, at that point in my life, like I didn’t really understand what was going on. I didn’t know enough to be worried the way I would be now. I was in a Facebook group though, like a mom group, and it was all for people that were due around the same time. And someone else in that group was slightly further along, and their baby was diagnosed with gastroschisis, so like the other one. So I had talked to her and been like, “Hey, like my doctor said that my son has this.” You know, she didn’t know what it meant either, but we kind of talked about it a little bit.
Dr. Fox: Looking back, why do you think the doctor who saw you at 16 weeks didn’t explain it well? Do you think that…was it a he or she?
Charlotte: It was a he.
Dr. Fox: Do you think that he just wasn’t good at explaining things, or did you think he was trying to sort of shield you from bad news? Or that maybe he was just trying to like, you know, get you out of there to the next specialist to explain that? Do you have a sense looking back why it might have been that you had such a limited understanding of what was actually going on when you walked out of there?
Charlotte: I think that it was to keep me from just not like being just completely worried. Because it was like almost three weeks before I could get in to see the high-risk doctor. And I think they were just trying to keep me from being on like level 10 for that whole time.
Dr. Fox: Like mercy. They were just trying to keep you…What do you think about that? I’m always curious to ask people because, listen, I’m in that situation all the time, and do you drop the anvil on them right away, or do you try to ease people into it over time? And different people feel differently about that. Some people want to know everything right away, and other people are appreciative to not get all the news at once. I’m curious what you think about it now?
Charlotte: Retrospectively, I think it was a good thing. Because really I was very young, my understanding of things was very limited, my anxiety about pregnancy was already just so high. Like that to really understand I think the risks, and the associated risks, like not just the condition, but all of the other things that could have happened with it. Just if I really understood that I would have probably called the high-risk office every day until they let me come.
Dr. Fox: So during those three weeks, you weren’t level 10 worried, you were level something else worried, lower. And then what happened when you ultimately several weeks later saw the high-risk specialist? I assume they repeated the ultrasound, right?
Charlotte: Yeah, they did.
Dr. Fox: Okay. And then at that time, did they explain to you exactly what was going on, and map it out, and sort of what the plan would be?
Charlotte: Yeah, so they looked at it, and then they talked to me about what was going on with it, and then they told me all of these other things. And then too, I think they were a little bit annoyed because I was kind of like not…I think they thought at the same time like, “She has no idea what’s going on. What’s up with her?” It was like, “Can you come in?” You know like, okay, I’m ready to see them. I’m ready to like get more information, and like, you know, get ready to whatever be in the, you know, has 20 weeks and like all this. And so, I don’t think they knew how my limited understanding was basically that this is like a little thing, it’s not that big of a deal. And then the other too, they had told me was that like it’s a really common birth defect.
Dr. Fox: They told you that at 16 weeks you mean?
Charlotte: Yeah. The other doctor said that. So I like, I really, you know what I mean? I was like, you know, this isn’t crazy, this isn’t gonna be that bad. So I went and talked to them, and they were like, “No, this is bad.” And…
Dr. Fox: Not so common.
Charlotte: Yeah. Like they didn’t say that specifically, but they were actually, it was a practice with like 10 doctors, and with the different doctors, you kind of got like different how bad this is gonna be. With the first one I saw, like looked at the ultrasound, you know, and then they were like, “Okay, we’re gonna send you to genetic testing. We’re gonna send you to look at the baby’s heart more closely. We’re gonna do all of these things, and then come up with what exactly is going on with your baby,” because they explained like there’s a good chance that they could have a heart defect with it, there’s a good chance that they could have a lung defect, there’s a good chance they could have just a genetic condition that’s all-encompassing.
Dr. Fox: Yeah. No, I think that’s true. I mean, you know, omphalocele is itself just an anatomic defect that’s fixed with surgery after birth, and so, which has its own challenges obviously, anything that needs to be fixed with surgery is not a walk in the park, but it’s sort of like that’s finite. But one of the issues with omphalocele is it’s frequently not the only thing that baby has. It’s frequently found with other things. So either other anatomic problems like in the heart, or a more global issue like a genetic problem. And so, if you do all those tests and realize it’s just the omphalocele, all right, okay, like it’s sort of you can wrap your head around that. And say, “All right, the baby has this. We’ll need a surgeon, we’ll need to fix this, and these are the complications, this is what might happen.” But if it’s other stuff, then it sort of opens up a bigger box so to speak of things that you may be working with with your child.
Charlotte: Yeah, so we did that before we really like discussed what all was the plan moving forward with him. It didn’t take that long to get it all done. The geneticist was in the same building and they sent me over there like the next day. And then the fetal echo, like where they look at the baby’s heart really closely. That took a little bit longer to get into, and then that took like four hours, and it was crazy.
Dr. Fox: Oh my God. Was it normal or there was a heart defect?
Charlotte: It was normal.
Dr. Fox: Four hours for a normal one. Wow, okay.
Charlotte: I know, they just kept looking and looking.
Dr. Fox: That’s a stubborn baby.
Charlotte: Yeah, he was just like not a cooperative ultrasounder unfortunately.
Dr. Fox: Did they do an amniocentesis with the genetics, is that how they got the testing?
Charlotte: So they offered that. I actually didn’t end up doing it, I ended up doing the blood one. Like by the time that they had talked to me about getting the amnio I was past 20 weeks. In Arizona, at the time, you know, you can’t have an abortion after 20 weeks. So I kind of figured like if I knew anything from that, that I couldn’t do anything. Like there was nothing I could do with the information but, you know, sit on it and worry. And I was just like past the point. I was like I’m ready to just like try and, you know, be in the moment and be pregnant, and not like keep just grabbing for more of that information, that’s how I felt at the time.
Dr. Fox: Did they have you meet with a pediatric surgeon before birth to sort of go over what might be involved with the surgery, or did they wait till after he was born to sort of talk about those things?
Charlotte: So they did. Through the heart one, that was with Phoenix Children’s, they had a program called The Mother-Baby Program, which like while you’re pregnant, they do it. So I met his surgeon, and that was the first time in my entire pregnancy that I felt like, “Okay, this is gonna be okay. I’m gonna have him, you know, we’re gonna get this taken care of.” She gave me so much confidence that this was okay. This is what she’s here for, and it’s gonna be good.
Dr. Fox: Yeah, I mean the surgeon probably said, “This is a surgical problem. I’m gonna fix it. You know, like I’m gonna put everything back in, and sow up the belly button, and all is gonna be well.”
Charlotte: Yeah, pretty much.
Dr. Fox: Okay, that’s good. So how did it go moving forward? So you had the reassuring ultrasound of the heart. You met with the surgeon. Whatever genetic testing you did, it came back normal, the blood test you did?
Charlotte: It came back with very low risks, yeah.
Dr. Fox: So far, all that’s going on is just the omphalocele, and I assume they did a lot of ultrasounds moving forward over the course of pregnancy?
Charlotte: Yeah, yep. Early on we went maybe once a week, and then at some point, it moved to like every other day.
Dr. Fox: Was there a specific concern? Like was he not growing well or there was the fluid low or something? Because that’s unusual to come every other day.
Charlotte: He wasn’t growing well and I got pre-eclampsia.
Dr. Fox: Yeah, that makes sense.
Charlotte: And so I felt like I lived there.
Dr. Fox: If only they had a mileage program.
Charlotte: Yeah, exactly.
Dr. Fox: Okay, so you had pre-eclampsia, when was this? How far pregnant were you when you got pre-eclampsia?
Charlotte: I was around 32 weeks.
Dr. Fox: It’s pretty early. And did they have to put you in the hospital at all for that?
Charlotte: Yeah, I got put in the hospital around 35 weeks.
Dr. Fox: And was it just because it was getting worse?
Charlotte: Yeah, it was getting worse. Like the day that they did it or the day before I got admitted, they had sent me from the office to the ER, and the ER had sent me home with like that gallon jug or five-gallon jug.
Dr. Fox: Yeah, to pee in for 24 hours. That’s a medieval test, but it’s an important one.
Charlotte: Yeah. So I did that, and then I went to the ER and brought my, you know, giant jug of urine.
Dr. Fox: Here’s my moonshine.
Charlotte: Exactly. And, again, I did not understand how serious pre-eclampsia was. I didn’t think I was gonna get admitted, I didn’t have anything with me, like I just kind of went there like, “Okay, they told me to bring this back in 24 hours. It’s been exactly 24 hours.” And they’re like, “Yeah, you’re getting admitted.” And I’m like, “Okay.” And I was like, you know…
Dr. Fox: When?
Charlotte: Why? Like what exactly is going on that’s making me get admitted? And then they spent more time telling me what’s going on. In the hospital, the practice that I saw, saw me in the hospital. And then the first day they were like, you know, “Do you have any headaches? Do you see spots? Things like that?” And I’m like, “No, no.” And my blood pressure was kind of staying where it was. My son was not very big, so I think they were just trying to keep me pregnant as long as possible to, you know, let him get a little bigger because I was staying pretty much exactly the same. So like dangerous but not…
Dr. Fox: Not crazy dangerous. Yeah, I mean, listen, it’s a balance on the one hand when you have pre-eclampsia, the way to resolve that is to deliver. So sort of for the pre-eclampsia the earlier the better, but for the baby that’s not often the case. And so. you’re sort of balancing, you wanna keep the baby in as long as possible but without putting you or his health in jeopardy. And that’s, yeah, these are tough decisions. That’s, listen, it’s why I have a job, right? So it’s just sort of these are the decisions that you have to sort of figure out, is it better to deliver or better to stay pregnant? And they did that while you’re in the hospital. At this time, so, you know, you’re 35, 36 weeks, and you’re in the hospital, and it’s your first baby, and he has this omphalocele, is your overall, I’m just trying to sort of where your head is at, at that time. Is it, “Hey, we’re close to delivery. I’m excited. It’s gonna be okay ultimately.” Or is it, “Oh my God. Like this is horrible that I have pre-eclampsia and the baby has this and may be born a little bit early.” I’m just trying to sort of get a sense because there’s different ways to look at it obviously.
Charlotte: After he hit like the point where once he was born the likelihood of a lot more issues was gone, I was just really like trying to be grateful, right? Like I had lost that first thank you. Like this one, you know, he’s got his omphalocele but like this is my chance to be a mom, you know, he’s gonna have surgery. And I had joined an omphalocele support group online too. And the stories in there were pretty much either it was in a sling and the baby came home. And for the most part, everything was good. Like it seemed like the overwhelming experience of other people was not that bad. And they had told me once I deliver, I might still have, you know, high blood pressure for a little bit, but this isn’t something that, you know what I mean. This isn’t something that was gonna be really bad. So I was just like, I was scared because I didn’t know what was gonna happen, but I was more just trying to be grateful for my son.
Dr. Fox: Ultimately, when did you deliver? How far pregnant were you?
Charlotte: I was 37 weeks to the day. Like the day that they admitted me, every day after that they kind of came in, and they were like, “Well, should we deliver? Should we keep you? Should you go home?” And then they were like, “Okay, this is over. Like 37 weeks, we’re gonna take him out, there’s starting to be…” He still wasn’t growing very much, and there was starting to be less benefit I guess for me being pregnant.
Dr. Fox: Yeah. And then the birth was an induction or a cesarean?
Charlotte: Cesarean. He had a giant omphalocele.
Dr. Fox: Yeah, with the liver out.
Charlotte: Yeah. So they were kind of like, I had really wanted a vaginal birth, and like, you know, all of that. So I had asked all of the different providers, you know, because there’s a bunch of them. And one of them had said, “If I’m on call, I’ll let you try.”
Dr. Fox: The one cowboy, you got one cowboy in the group.
Charlotte: And everybody else was kind of like no. But yeah. She wasn’t on call, so we had a cesarean.
Dr. Fox: How was the cesarean on your end in terms of, you know, it’s a pretty scary thing to go into an operating room and, you know, get the anesthesia, but was it scary, or was it more like nervous excitement?
Charlotte: It was definitely more like nervous excitement. I was really scared that the like spinal wasn’t gonna work.
Dr. Fox: Oh, and the pain.
Charlotte: Yeah, so I kept telling the anesthesiologist, I’m like, “I can still feel my feet. I can still feel my feet.” And he’s like, “Okay, wiggle your toes.” And I was like, “Did I do it?” And he’s like, “No. Like, you’re fine.” “Okay.”
Dr. Fox: Ultimately when he was born, what was it like at birth? Did you get to see him?
Charlotte: The C-section was super easy. It was like 30 minutes. And then he came out, and he was like screaming immediately, so I knew that was good. I mean, they were, you know, holding him up, and then there was like a whole team of people in there. And they’re putting him in a plastic bag and doing all this stuff, and I’m strapped down to the table. And like I’m shaking, but he, you know, he looked okay. He was screaming, and like my mom was there with me in the cesarean because my husband and I like split up while I was pregnant. So at the end there, my mom was in the room with me, and she was crying. And she said, “He’s so beautiful.” And like that part of it was really good. And the C-section was pretty easy.
Dr. Fox: How long was he in the NICU?
Charlotte: He was in the NICU for about six months.
Dr. Fox: Wow, what was the reason it was six months?
Charlotte: So, whenever he was first, like after he was born, the surgeon was there. She came in and she was like, you know, “He looks great. I think that I can just do the surgery, and then he’ll be able to recover and go home pretty quickly.” And so we’re like, “Oh, okay. You know, that sounds great.” And so she did the surgery. And then that was like an hour and a half after he was born. So the one picture I have from that day of me and him was me on the bed from recovery and him in his isolette going to surgery. And then when he came back from that, it seemed like he was doing really well. And then he just kept swelling and swelling, and I guess he got compartment syndrome. He was very small when he was born. He was only like four pounds and some ounces. And he swelled up to like 10 pounds. And it was really scary, and he looked like purple. And then like he stopped peeing. And then like a couple of days later, they’re like trying to do all of these things. You know, he had come off of the like breathing tube right after surgery, but they had to put him back on it, and he just got sicker and sicker.
Dr. Fox: Pediatric surgery is not my specialty, but my understanding from omphaloceles, when they put everything back in and sew up the belly, the concern is that if the belly doesn’t have enough space because it hasn’t developed, like the skin and everything hasn’t developed with all those organs inside, if you sort of put them all back in and then close it up, will it be too tight in there in terms of compressing other things? And that’s a known possibility. And so my guess is that’s probably, that unfortunately, that did happen, that when they put everything back in, it was just a little bit too tight, and so maybe it compressed some of the blood vessels, or some of the drainage, or, you know, whatever it might be. And then they’re trying to, you know, sort of work that out afterward.
Charlotte: Yeah, and then they had found that he had…So his lungs are small because of how big the omphalocele was when he was being born, and like that had become a problem when he was swelling. And then he was also having like the PDA, the little holes in your heart that are supposed to be there, those didn’t shut, the PDA and the PFO, those didn’t do what they were supposed to.
Dr. Fox: Right, he needed surgery to close those holes in the heart.
Charlotte: He didn’t end up having to have it, because like what happened there was he had another surgery on day five after he was born to remove bowel because he had had a bowel perforation. And then she left him open and did another procedure on day six, to see what else she could save. And I remember that really clearly because whenever this was all happening, I realized like, you know, these are the complications, this is really horrible, I don’t know what’s happening, I don’t really understand it. And then whenever she now sat down and talked with me I was like, “Okay, well like what does this mean? What are we looking at?” I’m like, “What’s like the worst-case scenario?” And I was thinking what’s the worst-case scenario in terms of like hospital stay and recovery, like still assuming that we’re kind of in this place where everything is going well. And she’s like, “No, he could die. He could die like tomorrow.” And I’m like, “Okay, well that’s horrifying.” And that’s the part where I was just really scared from there. You know she closed him and then things got better, the swelling went down. He was back to his normal birth weight. He still needed to be on oxygen for about a month. And then she was from Phoenix Children’s, but obviously, you can’t deliver in a children’s hospital. So we were at the hospital where I delivered. And so we decided to transfer him to the Children’s Hospital as soon as he got his breathing tube out. And then he needed more surgeries because he kept having adhesions. So like he would, you know, get done with a surgery, look great, and then he wouldn’t be able to poop, or like anything. And that just kept happening, like he had all of the side effects, it felt like, of what could happen.
Dr. Fox: How many surgeries did he end up having total in those six months?
Charlotte: Seven.
Dr. Fox: And did he need any after that, between when he went home and now?
Charlotte: He’s had two major abdominal surgeries since then. And then he’s had a couple more like less major ones, just minor. No, he had three, sorry. So he still has an IV, a Broviac from everything that happened. And you still G-tube that. So he’s had his Broviac replaced, which is a lot less scary. And then he’s had two major surgeries.
Dr. Fox: So explain to our listeners what that means?
Charlotte: So he’s fed, like when you’re in the hospital, and they give you all your nutrients, that’s about half of the way he’s fed through an IV. And then he gets up the rest of it through like a special formula that he gets through a G-tube.
Dr. Fox: Right, meaning a tube that goes directly into his stomach. So meaning he doesn’t eat and swallow.
Charlotte: No. And he can, and he does for fun.
Dr. Fox: Is his feeding situation expected to be indefinite, or do they think that there’ll be a point when the G-tube can be removed and he’ll be able to feed “normally.”
Charlotte: So I don’t think they have a solid answer on that yet. It’s kind of yes, kind of no, depends on what happens. Because originally, they had basically said no, but he’s been able to get a lot more formula than he was ever able to. So I think it’s possible, but I think we’re still a little while out from that.
Dr. Fox: And what’s he like now as an almost seven-year-old?
Charlotte: He’s really happy. He likes video games. He’s otherwise a typical child. Like if you saw him and I at the grocery store, you’d never know. Like he just, you know, he walks and runs, and plays video games, and has all of the same things going on.
Dr. Fox: Wow, that’s exciting. And what’s his name?
Charlotte: Matthew.
Dr. Fox: Matthew, that’s amazing. So looking back at this, I mean, what an experience for a first-time mom to go through. You know, sort of a scary diagnosis in pregnancy, your relationship splitting up during pregnancy and having a newborn who’s in the hospital for six months, and all these complications afterward. What do you take away from all of this? What was that like looking back on that whole, you know, year or two of your life originally?
Charlotte: So, I think looking back, it taught me so much. It was definitely the defining thing in my life. I was before, not very patient, and I had a hard time honestly being thankful for the things that I have. And it’s cheesy, but every moment’s a gift, you know? And whenever he came home, it was so hard. It was just so hard because he was on the IV 24 hours a day, and he was on the G-tube 24 hours a day. And, you know, they go home, and you don’t have someone to do those things for you. They send somebody out there for three days or so, and then it’s just you. It’s just you and this baby that they needed a team of people to take care of like a week before. And so you’re just kind of figuring it out. And from all of the surgeries and things he needed a lot of therapy. And like while he was in the NICU, he had a stroke because he had some clotting thing happening, and the hole in his heart hadn’t closed. And so he just needed physical therapy, occupational therapy, feeding therapy. But from all of that, he really doesn’t know even now, probably that he’s really sick. He gets mad that he can’t go swimming like other kids, but that’s pretty much the extent of it. Like, it’s just that I always feel like I really know how precious his life is.
Dr. Fox: Yeah, what an amazing way to look back on all this. I mean, to talk about, number one, how precious he is of course, but also how having him and caring for him changed you as a person, and as you’re saying for the better. That it sort of made you have sort of a different perspective, and also how you, you know, your own personal attitudes. And I think that it’s so telling of what, and this is true I think for any birth or pregnancy or child experience, that it does change you. And obviously, your experience was more maybe harrowing than others, and it’s certainly probably more complicated than others, but the fact that you’re, you know, looking back on this in such a positive light and not a negative light is quite remarkable, I would say.
Charlotte: Yeah, I think there was like a point where I realized that, especially when he was in the NICU, I realized like I can spend all of this time worrying because, you know, the complications thought like they would never end. Like I can sit here and worry about him for the rest of my life, but, you know, on the other hand, you could be in the moment, and like try to enjoy what you have. Because if you lose him or anything, these are the times you’re going to be thinking about, and that you didn’t try and enjoy it as much as you could.
Dr. Fox: Wow. Charlotte, that’s amazing. Thank you so much for sharing your story. Thank you so much for your insight, and for the lessons you’ve taught me and obviously all of our listeners. It sounds like not only are you an amazing person, but Matthew is an awesome kid. And he sounds like a lot of fun. And hopefully, we’ll get to throw him in the pool at some point soon.
Charlotte: Yeah, hopefully.
Dr. Fox: That’d be amazing. Thank you so much for coming on. Again, I really do appreciate it.
Charlotte: You’re welcome. I’m happy to share my story. I know birth defects are really common, like they’re very common in pregnancy. And it’s not something that you hear the story of all the time.
Dr. Fox: Thank you for listening to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman Podcast.” If you’re interested in telling your birth story on our podcast, please go to our partner website at www.healthfulwoman.com and click the link for sharing your story. You can also email us directly at hrbs@highriskbirthstories.com. If you like today’s podcast, please be sure to check out our “Healthful Woman Podcast” as well, where I speak with the leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Have a great day.
The information discussed in “High Risk Birth Stories” is intended for information and entertainment only, and does not replace medical care from your physician. The stories and experiences discussed in our podcast are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests on “High Risk Birth Stories” have given their permission for us to share their personal health information.