29. Why You Deserve Transparent Support After a Gastroschisis Diagnosis
July is Gastroschisis Awareness Month
You’ve just been told your baby has gastroschisis.
Now what?
It probably wasn’t a calm, sit-down conversation. It was more likely a quick ultrasound pause, a furrowed brow, and a referral tossed at you before you even had time to blink. You’re suddenly thrown into a new world of medical terms, daily anxiety, and more follow-up appointments than you can count.
And maybe somewhere in there, someone told you:
“Don’t worry. Your baby will go home totally normal.”
But here’s the thing—they might not.
And that doesn’t mean you’re doing anything wrong.
Here’s what no one seems to tell you upfront—and why transparent, clear support matters so much when you're facing a gastroschisis diagnosis.
What Is Gastroschisis?
Gastroschisis is a congenital condition where a baby’s intestines (and sometimes other organs) develop outside the body, through a hole in the abdominal wall near the umbilical cord. It’s diagnosed via ultrasound, usually in the second trimester.
There’s no way to sugarcoat it—it’s scary. It’s also something you likely never heard of before this moment.
And while yes, most babies do survive gastroschisis, that’s not the whole story.
What Happens After Diagnosis?
Here’s a rough sketch of the timeline:
Frequent ultrasounds to monitor growth and amniotic fluid
Early delivery, usually between 36–38 weeks
Immediate surgery after birth to begin to place the intestines back in (either silo or primary closure)
NICU stay, sometimes for weeks or months, to allow for healing and feeding support
Sounds clinical and straightforward, right? It’s not. This path is emotional, messy, and full of unknowns. But knowing what’s coming helps you prepare—and advocate.
What I Wish Someone Had Told Me
Here’s the part no one puts on the printout. The part you deserve to know:
🧠 Your baby might go home with more than just a scar.
Even “straightforward” cases can involve:
Oral aversions and feeding challenges
Sensory processing difficulties
Recurrent GI issues, like intussusception or volvulus
Long-term gut sensitivity or growth delays
An increased need for follow-up therapy
That whole “they’ll go home normal” narrative? It minimizes what you’re about to live through.
😔 It’s okay to grieve your original birth plan.
You can love your baby, be grateful for modern medicine and still feel the loss of what you imagined this experience would be. That’s not selfish. That’s being human.
📊 Stats don’t tell the whole story.
Survival rates are high—but that doesn’t mean your path will be simple. It’s okay to want more than “alive.”
You want your baby to thrive, and that’s valid.
🗣️ You deserve straight answers—not just reassurances.
Ask the hard questions:
What happens if baby doesn't tolerate feeds?
What if the bowel looks damaged or inflamed?
Who do we follow up with after discharge?
What should I watch for at home?
You don’t have to accept vague answers. Push for the details, and if something doesn’t sit right—ask again.
👉 Want help with what to ask?
I’ve put together a free download with questions specifically tailored for parents navigating a gastroschisis diagnosis. These questions will help you cut through the fluff and actually get the information you need from your provider.
Download the Questions to Ask Providers PDF here.
🧩 You don’t have to be glued to a support group to stay informed.
Online support groups can be helpful, but they can also be overwhelming. You need real, personalized support—and info that’s actually useful. That’s why I created a Gastroschisis Research Sheet, packed with reliable, evidence-based information to help you ask better questions and advocate for your baby with confidence.
Post-Discharge Isn’t the End—It’s a New Chapter
Once you’re out of the NICU, the support doesn’t stop. Here’s who you should have on your radar:
Pediatric GI — for long-term gut health and growth monitoring
Pediatric surgeon — to check post-op healing and watch for complications
Feeding or speech therapist — especially if baby struggles to eat by mouth or has oral aversions
Physical therapist — if baby had limited movement or delays during NICU stay
Yourself — as the center of this care team, your instincts matter more than you’ve been told
A great next step? The Global Gastroschisis Foundation. They offer education, community resources, and mentorships from parents who’ve been through it.
You Deserve Honest, Ongoing, Compassionate Support
This diagnosis changes everything—but it doesn’t change your right to ask questions, to feel supported, and to know what’s actually ahead.
You’re not “just another NICU parent.”
You’re a powerhouse who deserves real, transparent information—because that’s how you keep your baby safe. That’s how you make the hard calls. That’s how you actually feel empowered, not just reassured.
Want One-on-One Support?
If you’re feeling overwhelmed, I get it. You don’t have to navigate this alone.
Reach out to me if you want one-on-one support tailored to your journey. Whether it’s preparing for birth, asking the right NICU questions, or learning how to advocate at home, I’m here to help.
You deserve clarity. You deserve support. And you absolutely deserve to be heard.
What’s something you wish someone told you after your diagnosis? Drop it in the comments—I’d love to hear your story.
