How We Dealt With Our Newborn’s CF-Related Bowel Problems

Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.

| 6 min read
Jennifer-Chamberlain-Square
Jennifer Chamberlain
Jennifer-Chamberlin-And-Daughter-Featured-Rectangle

When at 23 weeks pregnant with our second child we were confirmed as CF carriers, I felt like the most ill-prepared person to have a child with medical needs. I have struggled with health anxiety since my 20s. Albeit terrified, I immediately jumped into research mode. I wanted to learn everything I could about caring for a child with cystic fibrosis.

My perinatologist had told my husband and me that the biggest concern for newborns with cystic fibrosis is a bowel blockage -- meconium ileus -- that occurs in approximately one in every five babies born with the disease. My research revealed exactly what meconium ileus is and how it is typically the first clinical manifestation of cystic fibrosis. We opted for a rigorous prenatal regimen of twice-a-week, non-stress tests and a weekly ultrasound to monitor for this condition.

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Despite reassuring doctors' visits, I always had a strong intuition our daughter had cystic fibrosis and that she would have meconium ileus. I also knew this meant my strength in medical situations would soon be tested. When our daughter was born, she did not have a bowel movement within 24 hours. She began vomiting green bile and at that point the doctors felt she needed to be transferred to a higher-level-of-care neonatal intensive care unit (NICU) at our regional children's hospital.

After six days of testing and scans at the children's hospital, the doctors turned to exploratory surgery. During surgery, we learned that not only did she have meconium ileus, but her bowel had perforated. That required an ostomy -- a surgery to reroute the way urine or stool exits the body -- and the creation of a stoma - an opening on the abdomen for the waste to exit. The stool was collected in an ostomy bag attached to her stoma.

The surgeons had mentioned the possibility of an ostomy pre-surgery, but it had all happened so quickly, I had no time to truly process what an ostomy was and its purpose. I had seen a few pictures online when researching it, but I had not fully grasped what it would be like to have a baby with an ostomy and the care that was involved.

I remember seeing her stoma for the first time and being taken aback; but shockingly, I jumped right into ostomy care, assisting the NICU nurses with bag changes and tracking stoma output.

I didn't even recognize myself -- as someone who was once terrified of doctors and hospital settings -- being so involved in such a grueling medical situation.

Ostomy care was my full-time job. There were days at a time that I did not sleep or eat. It wasn't the typical newborn, no-sleep phase we had experienced with our first child but a constant ostomy care regimen.

To begin, the stool from the ostomy's output was measured every three hours to track how our daughter's intestines were absorbing her total parenteral nutrition (IV feeding). This was done by pulling a syringe of the stool output from the ostomy bag. An ostomy bag had to be placed over the stoma perfectly every single time or it would fall off, which meant we could not measure the stool output that would provide critical data for the doctors.

Our daughter's ostomy bag needed changing frequently, sometimes as often as every hour during the day and night. We tried different pastes, powders, bag styles, adhesives and still we had constant ostomy bag issues. The inability to keep a bag on nearly broke me, leaving me in tears many days in the NICU. We also had an incredibly rare complication called stoma necrosis -- tissue death around the opening -- that necessitated a second surgery and a second ostomy to be created.

After two and a half months with an ostomy, our daughter's intestines were reconnected in a third surgery and our life without a stoma and just CF started.

I do not know if anything would have prepared me for a child with an ostomy. Those days were some of the darkest in our journey.

But they are also the days that taught me the most. I got a crash course in newborn CF care in the context of an ostomy, which added an entirely different layer. I learned how to advocate for my daughter in a medical setting, a lesson that I carry with me today as she becomes a toddler.

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Most importantly, I found out my daughter is my hero for what she went through during her meconium ileus journey. I will always be so proud of how far she has come since her ostomy days and forever grateful that the ostomy saved her life.

To the parent going through a meconium ileus journey, and more specifically an ostomy, I won't lie -- it is going to be hard. It may feel like there is no end in sight, but I promise you there are brighter days ahead. A rough ride with meconium ileus doesn't mean that your child will lead a horrible path with cystic fibrosis. If anything, your child has already proven they have the fighting spirit that will serve them well as a warrior.

 Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Infant Care | CF Related Health Conditions
Jennifer-Chamberlain-Square

Jennifer is a mother of two, wife, education law attorney and Pilates teacher-in-training. When not caring for her children, Connor and Claire, who has cystic fibrosis, she can be found at the beach, sneaking in reality TV, or planning her next trip.  She is an active member of the Orange County chapter of the CF Foundation and serves as a committee member for the Klassic gala. You can find her blog at theCandCdiaries.com and on Instagram.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.