When you first hear the word gastroshiza about your unborn baby, it can stop your heart for a second. I’ve sat with many parents in that exact moment — the mix of fear, confusion, and “why us?” is completely normal. Take a breath. You’re not alone, and the outlook is actually really good.
Gastroshiza happens when a baby’s intestines develop outside the body through a small hole in the belly wall, usually right next to the belly button. There’s no protective sac covering them. But with today’s care, most babies come through surgery just fine and go on to live completely normal lives.
Here’s the simple version: Gastroshiza is a birth defect where part of the baby’s intestines are born outside the abdomen. Doctors usually spot it during pregnancy ultrasounds and treat it with surgery right after birth. Most little ones head home healthy and grow up just like any other kid.
What Exactly Is Gastroshiza?
Early in pregnancy, around week six, the baby’s abdominal wall is supposed to close completely. With gastroshiza, a small hole stays open, and the intestines — and sometimes the stomach or other organs — slip through it.
The opening is usually small, just a couple of inches wide, and almost always to the right of the belly button. Because the bowels sit in the amniotic fluid for months, they often look swollen, red, and a bit thickened when the baby arrives.
One thing parents always ask me is how this is different from omphalocele. In omphalocele the organs are covered by a thin sac, but in gastroshiza they’re completely exposed. That difference changes how the doctors plan care right from the start.
Why Does Gastroshiza Happen? Common Risk Factors
Doctors still don’t have one single answer for why gastroshiza occurs. It’s usually not something you did or didn’t do, and it rarely runs in families.
That said, we do see some patterns. It tends to show up more often when the mom is under 25, smokes during pregnancy, or doesn’t get enough good nutrition in the early months. Being underweight before pregnancy can play a part too.
The one thing you can control is smoking. If you quit as soon as you find out you’re pregnant, it really can lower the risk. Eating a balanced diet and taking your prenatal vitamins helps your baby’s development too.
How Is Gastroshiza Usually Diagnosed?
Most cases are found during a routine ultrasound between 12 and 20 weeks. The doctor or technician sees loops of intestine floating outside the baby’s tummy.
Once they spot it, you’ll usually get sent to a specialist center for more detailed scans. They’ll watch the baby’s growth closely because these babies sometimes come a little early. You’ll also meet the whole team who will look after your baby after birth — neonatologists, surgeons, and nurses who handle this every day.
Many parents tell me that knowing early actually helped them prepare emotionally and ask every question before delivery day.
What Happens Right After Birth
The first few hours are critical, but the medical team moves quickly and calmly. They wrap the exposed intestines in a special sterile covering to keep them safe, warm, and moist.
Your baby heads straight to the NICU. I know it looks scary at first — seeing those tiny intestines outside such a little body. But the NICU staff deals with this regularly and knows exactly what to do.
Treatment Options for Gastroshiza
Surgery is almost always needed, and it usually happens within the first day or two. The goal is simple: get the intestines back inside the belly and close the hole safely.
Single-Step Surgery (Primary Closure)
If the swelling isn’t too bad, the surgeon can gently place the organs back inside and close the opening in one operation. This is the quicker route when it works.
Gradual Repair Using a Silo
When the intestines are very swollen, doctors use a clear plastic pouch called a silo that hangs above the baby. They slowly tighten it over several days until everything fits back inside, then close the abdomen.
Both approaches have really good success rates. Your baby’s surgeon will pick whatever feels safest based on how the baby is doing that day.
Your little one will get IV nutrition, antibiotics to prevent infection, and medicine to stay comfortable. The NICU team watches every detail around the clock.
Recovery Journey and Long-Term Outlook
The toughest part for many babies is getting their guts to start working normally again. At first they get all nutrition through an IV. Then the team starts tiny amounts of milk and slowly increases it.
Most babies stay in the hospital anywhere from a few weeks to a couple of months. Once they’re feeding well and gaining weight, they finally get to go home.
The encouraging part? Long-term, the large majority of these children do excellent. By age two or three, most have caught up in growth and are doing everything other kids do. Some deal with occasional reflux or constipation in the early years, but those issues usually fade with time.
Looking ahead three to five years, the main thing is just keeping regular check-ups and letting your child be a normal kid — playing, running, and growing.
Finding Support When You Need It Most
Nobody should walk through this alone. Connecting with other parents who’ve already been there makes a huge difference. Groups like Avery’s Angels share real stories, practical tips, and emotional support from people who truly get it.
Don’t be shy about asking your doctors every single question that pops into your head. Write them down between rounds if you need to. And please take care of yourself too — your calm presence helps your baby more than anything.
Gastroshiza can feel scary at first, but with today’s care the outlook is truly positive. Trust the process, lean on your team, and take it one day at a time. Your little one is stronger than you think, and you’re already doing the most important job — loving them through it.
If your baby has gastroshiza, talk to your medical team about any concerns you have. They know your baby’s specific situation best and will guide you through every step.
