#314 - 👶 From Diagnosis to Discharge: A Mother’s Journey Through Gastroschisis

Hello friends 👋

In this episode of Beyond the Beeps, Leah discusses the journey of NICU families, focusing on gastroschisis, a condition where a baby's intestines are outside the body at birth. Ruby Bacardi shares her personal experience with her son Oliver, who was born with gastroschisis and spent three months in the NICU. The conversation explores the emotional challenges, medical insights, and the importance of support for families navigating this journey. Dr. Daphna Yasova Barbeau provides medical perspectives, while Ruby emphasizes the significance of cherishing small victories and finding hope amidst uncertainty.

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The transcript of today's episode can be found below 👇

Leah:

Welcome everyone to Beyond the Beeps. We have spoken before in other episodes about babies who come to the NICU who are not preemies. One type of baby that comes to the NICU or that we see really quite regularly is babies who have something called gastroschisis breaking that down for those who don't speak medical terminology, gastro meaning “of the gut” or the intestines, and schisis being a splitting or, in this case, the intestines coming through a hole in the abdomen.

I remember the first time I actually heard about gastroschisis, I was in high school. I was pretty young, and it was phrased to me as being born with your insides on the outside, which felt pretty graphic. I realized they were trying to make it pretty simple for me, in non-medical language because I was young. But it seemed like a very interesting way to be born when they were sharing the story with me, it was about a boy who was in my high school and he was this awesome kid. He was really smart, really funny. He a football player, actually. I know that this story was told to me in a way of, we never know where people come from and we never know where they’re going and look where he is now from that perspective, it was a victory story, right? Or overcoming obstacles.

However, when we're living their stories from the beginning, it's really quite different. It's not the end of the story that we live when we have a baby. We're living every single moment and every single day. From dreaming about the future, imagining each possibility, from good and bad, especially when we're faced with a medical or genetic diagnosis, it can be scary. We certainly try to predict outcomes, but sometimes we have to alter our ideas of the future and maybe sometimes be afraid to dream then of course, what we have to deal with and cope with and try to survive is the reality of what we're facing.

Joining me today to share her story is Ruby Bacardi, the mother of Oliver who had gastroschisis also joining us throughout in providing medical insight and perspectives will be Dr. Daphna Yasova-Barbeau, a neonatologist and also Incubator host.

Ruby is an incredible fashion designer and clothing atelier. If you ever get a chance to see her work, it's just fabulous. She is absolutely inspiring she and her husband, Francisco, are the parents to Oliver, who was born at 36 weeks and spent three long months in the NICU also Enzo, Oliver's little brother, who was born full-term and did not go to NICU. She has been involved in the NICU community with ICU Baby since 2017, chairing fundraising galas, events, and working from behind the scenes to improve the experiences of thousands of NICU families I am thrilled to say that she's joining our team on the front lines as a NICU parent mentor supporting other parents who are experiencing the NICU. Welcome, Ruby.

Ruby:

Thank you, I'm excited to be here.

Leah:

You've been in the NICU world for a long while now, and you've been working quietly and very humbly behind the scenes to improve the lives of NICU families. Why did you decide to finally share your story with the world?

Ruby:

It's something that I've shared with family and friends, but not with everyone yet. Mainly because I feel that a lot of people have a misconception of the babies that are in the NICU. Everyone thinks that it's a preemie, and they were born early and they were born tiny, but that's not always the case. You can be born after a perfectly healthy pregnancy and then something happens and you're sent to the NICU or like us, we knew that we would be in the NICU for a while so I just wanted to share the story, and let other parents know that they're not alone. It takes an emotional toll on you. If this conversation can encourage more support, if one parent feels more prepared, more seen, more supported because of this conversation, then it's worth it.

Leah:

That's amazing. Yeah, I would agree with you. You're lending your story. As somebody who's been lucky enough to know you and work with you, I have shared, of course, anonymously your story, with other families who are facing gastroschisis I know it'll be even more impactful when they can really hear it directly from you I'm super-duper grateful.

And before we go into all of our story too far, I want to bring in Dr. Barbeau to be sure that we're using the right language, not the one that was given to me when I was little, which was not helping anybody understand it. Dr. Barbeau, can you help us understand what is gastroschisis and what is your experience in treating it?

Dr. Barbeau:

Gastroschisis is a birth defect where a baby is born with their intestines outside of their belly through a small opening next to the belly button. It happens very early in pregnancy, when the abdominal wall doesn’t form the way it’s supposed to. This way, the intestines are exposed to the amniotic fluid, so they become irritated and swollen. After birth, babies will need surgery to place the intestines back inside and close the openingme of the complications we see include difficulty advancing feeds because the intestines don’t work the way they’re supposed to. There’s risk of infections. Babies may have poor growth since many babies need IV nutrition from days to weeks while their intestines recover. It occurs at a rate of 2 infants for every 10,000 live births.

Leah:

Thanks Dr. Barbeau. Ruby, when was gastroschisis first presented to you?

Ruby:

So we were at our 13 week ultrasound. The doctor noticed something unusual in the ultrasound. He mentioned that the intestines form outside of the body, which is something I didn't know, and around 13, 14 weeks, they retract and the skin grows over and it closes, if at our next appointment, he could still see the intestines on the ultrasound and they were still visible outside of the body, it would confirm the diagnosis.

Hearing that was a little scary. I had never heard of gastroschisis before. I didn't even know that that was a possibility. It was a shocking moment and there were a lot of unknowns because I'd never heard of it, a lot of fears because I didn't know what was in store. I didn't know what the future would look like for Oliver. But from that point on, we were just thrown into this whole new world of specialists, of high-risk appointments. I had to go twice a week towards the end of the pregnancy for ultrasounds just to make sure everything was okay in there, and just preparing ourselves mentally for what was coming.

Leah

That is an over. mean, having a baby is an overwhelming and just life altering experience, obviously adding that on, I can imagine it being really frightening. Was anything ever said or told to you even in that pregnancy? Were they able to predict anything at that point, like to say, well, when he's born, this is what we're facing?

Ruby:

No, and that was scariest part. I mean, everything was scary, but not even knowing that. They can't see on an ultrasound what is outside. They just know that it is once the baby is born, then we know, and then they can give more of an estimate of the NICU stay, but still, every baby is different of what comes. They told me our stay could be two months, four months, six weeks…it was a lot.

Leah:

We talk a lot about uncertainty in the NICU for a lot of parents, they say that uncertainty was or is, as they're living through it, one of the most crippling things. What were those first days? Tell me about the delivery, the rest of the pregnancy, and his first moments in the NICU.

Ruby:

So other than the diagnosis, I had an amazing pregnancy. I had no symptoms. was great it was exciting to be able to see him on an ultrasound multiple times a week, which most moms told me that they don't see an ultrasound until towards the end.

The day he was born, I had gone to the hospital and we didn't think he was gonna be born that day, because I had gone to the hospital a few weeks before and I had to stay overnight for observation. I figured this was just gonna be the same thing. But then the doctor came in and said that he was gonna be born tonight, and even though he was 36 weeks, everything was fully formed, he would be fine, because that was my first concern. I think he knew with the look on my face and just answered my question immediately.

Once he was born, it was a C-section, I heard him cry. I didn't see him, and he was taken immediately. I was sent to recovery and my husband followed him to the NICU. He was born at 1055 PM, and around three o'clock in the morning, I was rolled into his room and I got to see him in the incubator and he was just so cute, so tiny.

Leah:

How much did he weigh?

Ruby:

Four pounds, nine ounces, I was told that that was big for a baby in the NICU, but for me it was tiny.

Leah:

He was kind of a mayor at that size. But that is tiny. How long was it before you were able to see him?

Ruby:

It was about three hours.

Leah:

That's wonderful. A lot of folks have had a longer delay in being able to get over there I'm really glad that you were able to get there, just for whatever they're going through or what the baby's going through. Incredible. I want to bring Dr. Barbeau back in here to talk a little bit about the decision making process Dr. Barbeau, what is the decision-making process for a baby who is diagnosed with gastroschisis. They come to the NICU, whether they knew before in like Ruby's case, or maybe they don't know until the baby's born. How do you make those decisions about when to procedures, surgeries, and how to progress them?

Dr. Barbeau:

There are two main ways surgeons repair gastroschisis. The first way is called a primary closure, where the intestines are placed back into the belly and that opening is closed right away, just a few days after delivery. The second option is a staged closure where special bag called a silo holds the intestines in place while they're slowly moved back inside the skin over a few days to a week.

That decision depends on how swollen the intestines are and how big the baby's belly is. Sometimes it's just not safe to put everything back in all at once. Doctors and surgeons make the choice based on what's safest and most comfortable for the baby. And no matter the method, the goal is always to protect the intestines while they're growing and healing and to keep babies comfortable and safe.

Leah:

And we'll come back to you Ruby, what was Oliver's plan? You said when you were pregnant, they couldn't tell you, we're going to do surgery on day one or hour four or any of those sorts of things. I assume that all of those things need to go back into the body, and then we have to sort of start a process. What was the recovery plan for Oliver?

Ruby:

So I was told that the easiest part would be right after he was born, and then everything else was pretty much unknown. His intestines were placed into something called the silo and it's just a plastic bag to keep everything moist. That was the one thing I knew was gonna happen for sure. I didn't know how old he would be when he would have his surgery. After that, it's all unknown. He had his surgery at five days old to close the hole, and from there it was all unknown - when he can breathe on his own, when he can eat. But the main part of the plan was to get him home. What was going to happen during that, we figured it out on the way.

Leah:

Amazing. So for the five days, did they tell you what he needed to do prior to surgery?

Ruby:

I was told that it was just when everything was finally placed back in, so it took five days. They had mentioned that the area is small because there was nothing in it. They would have to push little by little just to get everything back in once that was done, they did the surgery to close everything up.

Leah:

Wow, five days. Were you able to hold him in those five days?

Ruby:

No, I didn't hold him till he was about two and a half, three weeks old. It was amazing, but also terrifying because he was on a ventilator. He had a PICC line. He had wires and things everywhere. There was beeping it was a great moment to be able to feel him. But also I didn't want to move. I just didn't want anything to be unplugged. But it was amazing.

Leah:

Before the surgery, was he breathing on his own or was using some oxygen?

Ruby:

No, he was on oxygen the moment he was born. After the surgery, he was still on the ventilator for a little while.

Leah:

You talked about that feeling of like, it's like frozen, like you were frozen with him, but completely aware you had mentioned to me before you feeling the weight of his body on your body.

Ruby:

Yeah, yeah, it was amazing.

Leah:

That's so powerful. I imagine for him to be back close to your heart. At that point, I imagine he's intubated, not eating if we have a ventilator, we know that's kind of a rule. How long was it before they started trying some food for him?

Ruby:

It was about when he was a month old. We began our journey in the level three NICU, then a month later we were moved to level two, and that's where they started to try and feed him. It was so exciting, but it just felt like one step forward, two steps backwards. He would do great then we would have to stop the feeding and he would have to get it through the PICC line and the feeding tube and all of that, because he just couldn’t, it was too much for him to consume.

Leah:

It’s an issue of just too much work, too much to try to take in it a little bit. I mean, if we imagine our, our intestines, they're part of our, they go from our mouth to our gut to our bottom. It takes time to recover all of that. What was your original plan for, like I talked a little bit in the beginning about our dreams when we think about when we're having a baby, were you planning to provide like your milk, breast milk, or were you planning to go to formula?

Ruby:

My plan was to do whatever was best for him. I did try to pump while I was in the hospital. I didn't produce any milk. It could have been either I just couldn't, or the stress, because it's a very stressful situation. We went to formula when he started eating then once we got home, we also stick to formula. I didn't want to try to change anything because I knew that he was able to handle the formula, so I just didn't want to switch.

Leah:

Yeah. Were there any options available to you for him? Like at that point, like if you were starting to pump, was human milk available, like donor milk available, or was it just formula at that point?

Ruby:

No, it was just formula.

Leah:

Did he need anything special for having gastroschisis? Was there even a formula created for that, or was it just like our usual formulas that we have for our preemie babies and NICU babies who have medical issues?

Ruby:

It was just regular formula. The only difference really was that the proteins were broken down a little bit more. But other than that, was just the formula that they had.

Leah:

More gentle. That makes sense, right? If it's a little tummy's adjusting, you'd need something like that. Did he ever require fortification? We do that in a lot of our premature babies that are trying to put weight on. Did he ever any do any of that? Is that something that was caught for him?

Ruby:

No, no, that wasn't something that was presented to us.

Leah:

Yeah, so he was growing on the formula he had. What other special care did Oliver need when he was there?

Ruby:

So like I mentioned, he had the surgery at five days old and so began the process of placing his intestines back. He was also on the ventilator. He had a PICC line. He did have a blood transfusion at one point, I think it was about a week and a half when he was going to have old. Each part of it was so critical and it was so overwhelming to watch, but the NICU team was incredible. The nurses were amazing, the pediatrician, all the specialists, and they just all took such careful, compassionate steps to help him heal.

Leah:

What was done for you? Because you're talking about it very, like, yeah, and this is a thing that happened, right? And I know you know that when they're like, we have to put a PICC line in, it's not like, okay great. We're doing a blood transfusion, okay great. What were things like you said, they were super compassionate, they were talking to you a lot. Was there anything else that helped you? You know, you have to go through these things, you have to make these decisions, you have to move forward. Was there anything else that helped you in those times?

Ruby:

My husband, he was great. The nurses did answer as many questions as I had and they did their best. But again, they're not just taking care of my baby, they're taking care of a whole bunch of other babies. They really did their best to ease the way I was feeling and to answer the questions. I feel that maybe having another mom to talk to that had been through this before would have been very helpful.

Leah:

Yeah. Yeah, I remember wishing that when you were there too. Wishing that we knew somebody else, somebody who's walked your path. That's something that I know now you'll be able to provide for our families too. You've done it off the clock, and it's been really impactful for those families. Okay, so he was there five days, we have the surgery, making that progress, starting and stopping feeding. That's something that seems to affect more NICU families than not, the “feeding and growing” phase of the NICU. Having those like mini (or maybe it felt like major) setbacks, was there anything that you were able to use as a strategy to help get through those? I don't know if this happened to you where they're like, “okay, you’re going home on Friday,” then they're like, “well, you didn't take all the formula this night before, so we have to wait another few days.” Anything that helped you with those setbacks?

Ruby:

I feel that not having a specific date told to me really helped because I feel like if, if I had known a date and then we were set back, it would have just been even more sad and upsetting than the situation already was. I think that was very helpful. I was there all the time, so I think just me being strong, because it's no longer about me anymore. It's about my baby. I think that just kind of made the whole mood in the room a little bit better.

Leah:

That's good to know. Say more about that, that mood in the room.

Ruby (21:27.662)

I'm the type of person that if you're going through something and you have a negative attitude towards it, I feel that that negativity is just going to linger and affect everything around you. I was trying to be as positive as I could, so that he would feel the positivity and the strength to keep going I would feel the same way.

Leah:

That's beautiful. But also a lot to ask for somebody who's going through a really hard time like you were. Knowing that that's how you wanted to show up, how did you support yourself, or fill your cup, or was it that you just had this iron will? Was it your husband, making sure you eating, sleeping, walking? Any other things that really helped to allow you to endure that for three months. I mean, that's a long time to not lose positivity.

Ruby:

Right I have to say, I wasn't always like that, but the second I had Oliver, I was just, I don't know, I think other moms can attest to it, just something changes, and you know that it's no longer about you. That's something I learned about myself through this whole process that I could actually be positive and calm, and take it day by day. But to answer your question, one of the things that was most helpful was before he was born, we had a meeting with his pediatric surgeon. That was really informative because I went straight to Google and it was very unhelpful, because everybody puts their two cents in, and it causes a lot more anxiety than you should have. During the meeting with the pediatric surgeon, I think I still have the paper somewhere that he drew. He drew intestines, he drew the baby. He mentioned a little bit about what the plan would be after birth, the silo, the incubator, the surgery. It was just nice to have somebody walk us through and answer our questions that wasn't Google.

Leah:

Yeah, don't go to Dr. Google. That’s important - information from a trusted and reliable source that you felt confident. He respected you, you respected him, and you guys were able to move forward. So this is the NICU period, I know one other big uncertainty is now you're going home. You're going home with a baby who has been through a pretty serious medical experience. Was anybody able to give you a this is what we can look forward like look towards or what we expect from that point forward? Or was there even a discussion about that?

Ruby:

There was no discussion. That would have been something very helpful if we had a discussion about that. But for us, there wasn't. We went home, and had to figure it out.

Leah:

Was, did Oliver go home with any medical equipment or anything like that?

Ruby:

No, he didn't. We had grown so reliant on all the machines. I could tell you what everything means, all the beeps, all the lines, everything. Then we get home, and we have none of that. It was a big adjustment because we were so reliant on it. A week after we got home, he was diagnosed with gastroparesis, and we didn't know that until we went back to the NICU a week later. So it kind of felt like we could never fully breathe easily and was the constant back and forth. It was exhausting. He had a very hard time feeding, which is why we ended up back in the NICU that's where he was diagnosed with gastroparesis. Gastroparesis is slow motility. Because everything is going through your intestines very slowly, sometimes it causes a bacterial overgrowth and it makes you really sick, which is one thing that we still deal with to this day, not as frequent as when he was younger, but it's still something that every once in a while he'll get, and we have to take an antibiotic for it.

Leah:

So when he went home, he went home, everything was typical, but then very shortly after, he got sick. That was the first indication that something wasn't well.

Ruby:

The sickness and not being able to eat and just not tolerating the food and throwing it up.

Leah:

Poor guy. You finally get home after the NICU and your nervous system hopefully was starting to unwind a little bit and now you're back. What was that second stay like?

Ruby:

It was actually, I would do that stay again. Only because we ended up meeting the most amazing gastroenterologist there, and I don't think we would have found out about her unless we went to that hospital. We still see her now every six months and she's absolutely amazing.

Leah:

Wow, the providers make such a difference, right? Was there a change in Oliver's plan of care from that point forward, or his sort of his lifestyle?

Ruby:

I was told that he could still eat and drink normally once he grows, he'll have less of the slow motility issues, and that he would just be a normal kid.

Leah:

And you've seen that to be true, more or less. What's Oliver like now? Tell us more about him outside of his intestines.

Ruby:

He is a baseball player. He loves baseball. He lives, breathes and eats baseball. He has the most amazing relationship with his little brother. They're best friends. He's just being a kid and he's doing what he loves.

Leah:

That's awesome. What grade is he in now?

Ruby:

He's in second grade. He'll be nine this July and it'll be nine years since I was introduced to ICU baby and started my journey with you guys.

Leah:

Yeah. Wow, you're one of the original families. You mentioned before, you wish you had had somebody who had been through it. What would you have wanted someone to say? Or maybe it's not something they say, if you could have had somebody say what you wanted to hear, do you think what it would it have been?

Ruby:

I think having another mom or a family who had gone through something similar to this, somebody who understood what I was feeling emotionally, what the challenges that we are facing, what we would be facing, and they'd gone through that would have been very reassuring. The medical team provides amazing care, the nurses provide amazing care, but there's only so much that they can do. As I mentioned, Oliver's not the only baby that they're taking care of. So having someone that really understands the emotional roller coaster that you're going through, has to be someone who's gone through it themselves. Someone who can just listen and say, yeah, I've been there with the feeding. Take a day by day, step by step. That would have been, that would have made me feel a little bit less isolated and more confident navigating the journey.

Leah:

Yeah, that makes sense. You have this beautiful platform now. What would you tell a family who's there now? I mean, I know we have across the country and across the world, we know with the prevalence of gastroschisis, we know we have babies, families who are by their baby's bedside. What would you want them to know?

Ruby:

Cherish every good moment, and those are the moments that, that'll make everything feel worth it. You know, seeing the baby in baby clothes for the first time, or seeing the baby smile. I never thought I'd be so excited for poop. Just holding onto those moments and, you know, despite the challenges and how tough it would be just those little victories, just.

Leah:

Yeah, that's beautiful. We love celebrating every tiny victory it makes me think if I had my way, we'd have a milestone card for first poop. That would be a good one.

Ruby:

I mean, my husband and I, were, I think we were even cheering. We were just so excited.

Leah:

It is wonderful. We need all the parts to work. That's amazing. I think, we use the word a lot, in this world NICU, we use the word hope a lot. You'd haven't said it out loud, but I hear so much of it in just who you arert of it's your aura, your wealth, like your being is really living in that hope. What does hope mean to you?

Ruby:

To me, just means holding onto the belief that things can get better. The road ahead seems very uncertain with a baby in the NICU, but just finding strength in the small victories, trusting that even in the hardest moments, there's a light to be found. Now I just look at Oliver and watching him play baseball or seeing him smile, or playing with his brother. That's hope.

Leah:

Yeah. That's beautiful, Ruby. Thank you so much for taking a few minutes today to join and talk about Oliver, who is an extraordinary little guy, and so is Enzo, your whole family are just wonderful people, and I'm super glad to have this chance to let you talk to our other families out there in the world who have this.

Thank you, everybody else, for listening today. If you're out there, maybe you are recovering from having gastroschisis or another genetic condition or prematurity or even a 24 hour monitoring. We want you to know that you're not alone, that Ruby and I are here with you and we look forward to sitting with you again soon. Take gentle care.