I love sharing our personal journey with gastroschisis in hopes of offering encouragement to anyone else facing such scary circumstances (you can read my first post here), but I think it's important to see that Bastian is not unique in his success story. I reached out to a few other mothers who gave birth to gastro warriors, so you can see for yourself that the odds are in your favor.
Special thanks to the ladies who participated in this Q&A and gave us a little glimpse into their experiences with gastroschisis. While every case is different, what these babies prove over and over again is just how strong they are.
Responses are color-coordinated:
Answers from Kari Lewis are blue.
Answers from Rheana Blair are pink.
Answers from Rebecca Bonecutter are green.
Emmett Rosser, after his closure
When and how did you find out your baby had gastroschisis? What were your first thoughts?
My husband and I found out at 18 weeks at a 3D gender reveal. The company called our OB and informed them. We then were called in for an appointment with our OB that I actually went to alone. We had no idea anything was “wrong”- I was completely in shock. I remember sitting in my car crying thinking to my self. how will I tell my husband something is wrong with our baby?
Kari Lewis, mom to Barrett
I found out that my son had gastroschisis in a rather hard way. I had my routine genetic testing done... around 18 weeks. The nurse who contacted me said over the phone. “Hi, just calling you to let you know that we got your test results back for genetic testing and your baby has spina bifida and most likely won’t make it.” Just like that. It was one of the absolute most horrifying experiences I have ever went through.
I was referred to a specialist at UNC Chapel Hill within two days and was shown that in fact it was not spina bifida. I was so relieved. No matter what I was going to love him. The doctor came in and explained gastroschisis in full detail to me. It helped a lot to hear the positivity from him. I was scared, but I didn’t want to show it, I wanted to be strong for my family. My boyfriend has three other boys and has never had an experience like this, so he was TERRIFIED. I have had experience in medical and am trying to get into nursing school so something like this was intriguing to me as well. I just wanted to do everything right for Emmett.
Rheana Blair, mom to Emmett (age 7 months)
On my very first ultrasound my husband I found out and it was devastating. We were at the military hospital in Virginia (husband was a marine). I was at a loss because I had no idea what it was or if my baby would survive. My pregnancy was deemed high risk at that moment.
Rebecca Bonecutter, mom to Daemon (age 18)
Had you ever heard of gastroschisis before?
Yes, when we went to tell friends that we were expecting a mutual friend told us about his niece being born with the defect.
I had heard of babies being born with their intestines out but I had never known the name or that there was more to it than just intestines coming out -other organs could come out and the different medical conditions that could come from it.
Never, it's not very common.
Did you have a good support system?
Yes, the best.
My support system was and still is AMAZING! My mom was with me when I got the phone call. If there was an appointment that my boyfriend couldn’t get off work for my mom was right there with me. My entire family is my world and I am so blessed to have them!
Yes,my husband at the time and his family.
collage of Barrett Lewis then and now
How many weeks were you when the baby was born? Did you have a C-section or vaginal delivery?
37 weeks 6 days vaginal
I had a scheduled induction set for July 31st, 2019 and I would’ve been 37 weeks. He decided to be a stubborn baby and come a week earlier. He was a very active baby, so on July 23rd while out eating with my mom, I noticed I lost my mucous plug and after that he was not moving. I tried so many things to get him to move- soda, chocolate, any kind of sugary candy, everything I could think of- and nothing.
After about 9 hours of no activity, I tried to pass it off as maybe he was having a lazy day and was sleeping a lot, but then I started feeling bad. I felt like I was drained, so we went to the hospital. I had a 30 min ultrasound to check his movement, he wouldn’t move at all. Little did I know I was in labor and having contractions, I just couldn’t feel them. I actually slept through them for the 45 minutes of sleep I got!
They moved my induction up. It was 1am when I got there, they gave me Pitocin for about 2 hours. He had very late delayed decels so they took me off that and said I was scheduled for C-Section at 8am. Took me back at 8:15 and my baby boy was born at 8:30am!
I had a vaginal delivery, I was in labor at 35 weeks, they did an episiotomy to make sure there was no additional possiblity of pulling more out (intestines).
Tell me about the NICU and surgery experience. How long was your baby in the hospital? How many surgeries did he or she need?
We had a 28 day NICU stay . A silo was placed and then closure surgery on day 7. We stayed at the Ronald McDonald House until we could be in a private room with Barrett. Our stay was such an eye-opener to life. Barrett was my first baby I was able to learn how to take care of him while he recovered.
The NICU was AWESOME. He had wonderful doctors and nurses. His team was truly phenomenal. He did well with his silo bag, he was approved for surgery on the 4th day and on the 5th day he had his closure. He handled everything so well, minus wiggling his epidural out. I tell people he did that just so Mommy could hold him sooner! He was taken off his pain meds within 2 days and off his Tylenol about 6 days after that. So far, we have only had the closure surgery but he will most likely have to have a hernia surgery in the future because his surgeon thinks he’s starting to form a hernia.
The delivery was really hard. I was in a lot of pain, I ended up throwing up while pushing. I got to see Daemon first a few seconds before they wheeled him to surgery. He stayed in the NICU for a month. I stayed in the Ronald McDonald house so I was close to the hospital. He only needed the one surgery immediately after delivery.
Rebecca Bonecutter with Daemon when he was around age 5
How was the recovery process for you and your baby? What was it like bringing her/him home?
Barrett recovered very quickly compared to others. Coming home was very natural for us.
Recovery for me was hard. I was stubborn and refused my pain meds after my surgery, ended up having two blood transfusions post-op. After I was released, I ended up in the ER twice because of the excruciating amount of pain I was in, turned out I had pulled a muscle that was trying to heal from overdoing it.
His recovery didn’t seem that long to me. We were there 27 days. It was like he was just ready to get out of there. We only had one set back with feeds and then once he got to start again, he was good. I was nervous bringing him home because I finally had to do the 24/7 care. I was scared I was going to hurt his belly or do something wrong. He is my first child, and I had such terrifying anxiety that I was going to do horribly at taking care of him that the first 2 weeks I barely slept, didn’t really let anyone hold him but me because I was scared they would hold him wrong and rip his stitches. It was awful, but we got through it together and I learned as I went.
Emmet on the day he was able to go home
What was the hardest part for you personally?
Seeing Barrett on a ventilator after closure surgery. I was already a hot mess of emotions and it was very hard to see a machine breathing for my baby. He was on the vent for one day.
I think not getting to hold him after he was born. I wanted to do the skin to skin so badly but I knew I couldn’t. They took him out, showed me through the curtain for what felt like literally two seconds and then took him away. I was one of the last people to see him in the NICU, but I was the first one to hold him.
Not being able to hold him after I had him, seeing him hooked up to all the wires and tubes. Not being able to breast feed.
What surprised you most?
How fast we came home. I was told at least 3 months.
How quickly he got through everything. I did my research, and I saw other people’s stories about how long they were in the NICU and I was anticipating a while. He is my little fighter; he has shown me what strength really is. He is my little hero. I never realized how strong such a tiny little human being can be.
How caring the NICU staff and nurses were. And how Daemon grew up with no major challenges.
What do you wish you knew before the whole experience? What advice do you have for women who are pregnant with a gastro baby?
I wish I would have been more mentally and emotionally prepared if that could even be possible. My advice is to stay positive. These babies are warriors.
I wish they would broke the news better. Like. they had me thinking my baby was about to die. For women: never lose hope, get a second opinion to make sure. I prayed for my boy and he is beautiful and perfect.
I was calm and understanding before I went into labor. The one thing I’ll say was I didn’t know how strong I was while being in the NICU with him. It is hard having to leave your baby in a hospital, that is something you must mentally prepare yourself for.
My advice would be, don’t be scared to ask questions. Delivery is a scary and amazing thing, but sometimes things don’t go the way you want or according to plan. Don’t be discouraged, you will get to see and hold your baby, it just may not be right away. Skin to skin with them is very rare depending on where your hospital is, most don’t allow it, so be prepared for that. Reach out to people on social media, families through the hospitals, and things like that.
Don’t compare your baby’s gastro adventure to others. Keep notes, write down as much as you can so you can share it with them when they are older. They all will have different obstacles to overcome. Make sure you are taking care of yourself first! Your mental state is CRUCIAL in this time. You cannot take care of your baby if you aren’t taking care of yourself.
Don’t feel guilty if your baby gets out of the NICU before someone else who has been there longer. If you don’t have a good support system, reach out to the wonderful moms/families on the FB page or through Avery’s Angels. Use any available resources the hospital has for you. Never feel like you are alone.
Hold your baby’s hands, talk to them, and read books to them! Take lots of pictures and watch your beautiful babies grow!
a recent picture of Emmett
If you or someone you know has experience with gastroschisis and you're interested in sharing your story, please contact us via firstname.lastname@example.org
Jennifer Scott Pickett is half of the comedy duo that makes up Salty Mermaid Entertainment in Atlanta, Georgia. Her content has been featured on Buzzfeed, HuffPost, Scary Mommy, Reddit, and Red Tricycle, among others, but her family doesn't care. They just want her to buy more snacks.