You’ve probably never heard of gastroshiza until a doctor mentioned it during an ultrasound or you stumbled across the term while searching for something else. Here’s the short version: it’s a birth defect where a baby’s intestines end up outside their body through a gap in the belly. Sounds terrifying, right? But doctors fix this all the time, and most kids come out of it just fine.
What Gastroshiza Actually Is
Gastroshiza or gastroschisis, if you want the proper medical spelling happens when a baby’s guts develop on the outside instead of tucked safely inside. There’s a small hole in the abdominal wall, usually off to the right of where the umbilical cord connects, and the intestines just float around in the amniotic fluid. The CDC says this shows up in about 1 in 2,400 babies born in the U.S. The hole itself is pretty small, maybe 2-4 centimeters. Your standard 20-week ultrasound catches it doctors see the bowel loops hanging out where they shouldn’t be, and that’s when they know what’s going on. No protective sac covers anything. That’s important because it separates this condition from similar problems where there is a covering. With gastroschisis, it’s all exposed.
Why This Happens
Somewhere around weeks 10-11 of pregnancy, every baby’s intestines are briefly outside their body before rotating back in. It’s a normal part of development. With gastroschisis, the abdominal wall just doesn’t close up like it should at one spot.
Why? Nobody really knows. It’s not genetic, at least not in the way most people think of genetic conditions. Studies show younger moms have it happen more often, but that doesn’t mean older moms are in the clear or that anyone did anything wrong. You didn’t cause this by eating the wrong foods or missing vitamins or anything else you might be blaming yourself for.
How Surgery Fixes It
Every baby with gastroschisis needs surgery there’s no getting around that. The surgeon has to get those organs back inside and seal up the hole. Two ways to do it:
Primary closure means they do it all at once, usually within a day or two of birth. Push everything back in, stitch it closed, done. Works great when there’s room in the belly for everything.
Silo method is for trickier cases. They put a sterile bag called a silo over the exposed organs and slowly squeeze it smaller over several days. The baby’s abdomen gradually stretches to make room, and once everything’s back in, they do a second surgery to close the gap.
Both work well. Which one your baby gets depends on their specific anatomy and how much intestine needs to fit back inside.
What Happens After Surgery
Your baby’s going to be in the NICU for a while. Could be three weeks, could be three months. Nobody can predict it exactly because every baby’s intestines recover at their own pace. Here’s the problem: those intestines have been soaking in amniotic fluid for months. They’re angry, swollen, and not ready to work properly yet. After surgery, they need time to calm down. So babies start on IV nutrition TPN, if you want the acronym. As the gut wakes up, nurses start giving tiny amounts of breast milk or formula. Some hospitals have specific feeding plans that speed things up a bit. But it’s still a waiting game. Some babies bounce back fast, tolerating feeds within a couple weeks. Others drag their feet for months. Both are normal. The NICU team watches for infections, keeps the baby comfortable, and makes sure the surgical site heals right.
Short-Term Challenges
Those first weeks are rough. The biggest issue is getting the bowel to work again. It’s swollen and sluggish, which controls when your baby can eat normally and go home. Infections are a risk since the intestines were exposed. That’s why babies get antibiotics right away. Some develop blockages or holes in the intestine not super common, but it happens and needs extra treatment when it does. The whole time, your baby’s getting complete nutrition through an IV. It’s frustrating to wait, but rushing doesn’t help. Small steps forward are still forward.
Long-Term Outlook
Here’s the good news: survival rates are over 90% when babies get proper care. Most kids recover completely. They eat normal food. They run around and play sports. They grow at regular rates. The only leftover is a scar on their belly, and that’s it. A small group has ongoing problems. Short bowel syndrome happens if they had to remove a chunk of damaged intestine, leaving too little to absorb food properly. That needs long-term management, but it’s not common. Some kids deal with reflux or constipation annoying but manageable with diet tweaks or meds. Occasionally someone needs another surgery down the road for a hernia or scar tissue causing a blockage, but those aren’t emergencies.
Planning for Delivery
If they caught this on your ultrasound, you’ll deliver at a hospital with a serious NICU and pediatric surgeons on call 24/7. You don’t want to have the baby at a small community hospital and then have to transfer.
Delivery usually happens around 37-38 weeks unless something goes wrong that requires earlier action. You can deliver normally having gastroschisis doesn’t automatically mean you need a C-section.
Right after birth, the team wraps the exposed organs in sterile, moist dressings, keeps the baby warm, starts IV fluids, and begins antibiotics. Then it’s off to the NICU for assessment and surgery planning.
Family Support
This whole thing is emotionally brutal. Seeing your baby with their intestines outside their body is shocking, no matter how much you prepared. The NICU stay drags on, and you feel helpless.
What helps: understanding that doctors see this regularly and know how to fix it. Most babies do fine in the long run. The NICU journey has ups and downs that’s expected, not a sign something’s going wrong.
Hospital social workers can connect you with resources, help with insurance headaches, and find support groups. Talking to other parents who’ve been through it provides perspective you can’t get anywhere else.
Questions Worth Asking
When you’re meeting with doctors, nail down the practical stuff: Where exactly are we delivering? Which surgical method are you leaning toward? What’s the average NICU stay here? How do you handle feeding progression? What follow-up happens after we finally get home? Knowing the answers helps you prepare mentally and recognize when things are moving in the right direction.
The Reality
Families who’ve lived through this describe it in phases: shock when you first hear the diagnosis, fear around the surgery, frustration during the slow NICU days, and finally relief when your baby starts eating and you get the discharge date. Progress isn’t linear. You’ll have great days where everything looks perfect, then setbacks where your baby’s belly swells or they vomit and feeding gets scaled back. Eventually, things click. Feeding advances consistently, the IV gets pulled, and you start packing to go home. Once you’re home, most babies do great. They eat, gain weight, hit their milestones. Years pass, and the whole ordeal becomes just another story from when they were tiny. The kids are healthy and active, and the NICU stay fades into background noise.
Bottom Line
Gastroshiza is scary to look at but doctors have it figured out. Surgery fixes it. NICU time is hard but temporary. The vast majority of babies recover completely and live totally normal lives. Decades of experience treating this means outcomes keep getting better. If your baby has gastroschisis, here’s what to hold onto: it’s fixable, they’ll get through it, and the future looks good.
References
- Centers for Disease Control and Prevention (CDC). “Gastroschisis | Birth Defects.” Updated 2024.
- MedlinePlus, U.S. National Library of Medicine. “Gastroschisis.” Updated 2023.
- National Health Service (NHS), United Kingdom. “Gastroschisis.” Updated 2023.
- MedlinePlus Genetics. “Gastroschisis vs Omphalocele.” Published 2016.
- PubMed. “Quality Improvement in Gastroschisis Feeding Protocols: A Multi-Center Study.” Published 2025.