Intestinal Malrotation Foundation
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Intestinal Malrotation Stories

Oakley's Intestinal Malrotation Story

When my son Oakley was born he looked and acted perfectly healthy at first. As I was holding Oakley, just staring at the beautiful boy I had delivered, he forcefully spit up yellow tinged fluid. I didn’t think about the color of the spit up, but I was startled by how forceful it was. My husband and I told the delivery nurse who said it was just amniotic fluid.

We asked several more people if Oakley's spit up seemed unusual, but they all reiterated it was fine. Although everyone kept telling us it was normal we were still concerned.

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I delivered Oakley at 4:16 p.m. and was transferred to our postpartum room right before the nurses changed shift at 6:30 p.m. The nurse who was finishing up her shift when we arrived took one look at Oakley’s yellow tinged baby blanket and told us not to panic, but that she was going to bring this to the attention of Oakley’s doctor. The pediatrician caring for Oakley assured the nurse that Oakley was fine. She knew something wasn’t right so she went around the pediatrician to the NICU doctor. On nothing other than a gut feeling, she asked the NICU doctor to please evaluate Oakley. That nurse, Jen Coleman, was Oakley’s nurse for only 30 minutes. In those 30 minutes she saved my baby’s life.

The NICU doctor felt that Oakley’s spit up was concerning enough to perform an upper GI series. The color of his spit up had begun to change from yellow tinged to bright yellow and then green. I didn’t really understand what was going on. I was a nurse myself in a critical care setting, but when it came to my own baby being sick everything I knew seemed to leave my mind. I was in shock and denial. While Oakley was taken to the GI lab, I googled “Why would a newborn spit up green?” I scanned words such as volvulus and surgery then immediately shut my phone and told myself that Oakley would be fine.

Around 9 a.m. they told me that Oakley’s upper GI showed a narrowing of his intestine. They also told me Oakley was in the NICU being prepped for transfer to a pediatric hospital where he would likely need surgery.

As soon as the doctor told me Oakley needed to be transferred for surgery I burst into tears. I didn’t understand what malrotation or volvulus was. It was like the Charlie Brown voice. People would talk and I just heard noise. The only thing I could think about was my not even one day old, 7 lb 2 oz baby needing surgery.

After that survival mode took over. The nurses on the maternity unit asked what they could do for me and I told them I was leaving. I hadn’t been discharged yet, but I told them I was going with my baby and I needed them to help make it happen. They drew my postpartum blood work as I got dressed and packed my bags. They reviewed discharge instructions with me as I walked down the hall to the NICU.

An ambulance arrived to transport us to Children’s Hospital of Philadelphia. After a forty five minute ride to CHOP, we found ourselves kissing our newborn baby goodbye as they carried him into surgery.

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My world felt like it stopped during the hour he was in the operating room. All I can remember is praying that my sweet boy would be ok. Luckily, his obstruction was caught early and no damage was done to his intestine. The surgeon performed a Ladd’s procedure to prevent future twisting. A week later we took our sweet boy home.

As a nurse I wanted to know all the facts. When the surgeon explained intestinal malrotation and the Ladd’s procedure I asked if there was anything we needed to worry about in the future. The surgeon said there was a very small chance of a recurrent volvulus after Ladd’s, but that it was extremely unlikely. Oakley was essentially “fixed.”

Oakley was healthy at first, but a month after surgery he started to spit up yellow again. It wasn’t forceful and Oakley didn’t seem bothered by it. Panicked, I took him to the surgeon the next day. The surgeon looked at the spit up, looked at Oakley and told me everything was fine. He thought I was just worried because he had mentioned the small chance of a recurrent volvulus. I asked if he wanted to do any tests to be sure and he said it wasn’t necessary.

Over the next three months Oakley got worse. It happened so gradually that we didn’t realize how bad he had gotten. He began to spit up yellow frequently, he was fussy, he cried and had trouble staying asleep. Eventually he started to have what we called “episodes.” He would become very upset, then forcefully spit up a large amount of yellow fluid.

Because the surgeon had told us it wasn’t a surgical problem, I started bringing Oakley to the pediatrician. We went so often I felt like the pediatrician thought I was crazy. Oakley was diagnosed with an array of normal baby things; reflux, colic, a stomach virus. We wanted to believe the doctors, we wanted it to be those things. Deep down we knew something wasn't right.

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When Oakley was four months old we got in touch with an amazing pediatric gastroenterologist. The day of our first appointment Oakley was in a good mood and I was worried the new GI wouldn’t believe there was a problem. Instead, she helped us put a plan in place to figure out what was going on with Oakley. I cried on the drive home because I felt like I had someone in my corner for the first time.

The day after the appointment Oakley began to projectile vomit large amounts of yellow spit up. I called the GI and she instructed me to take Oakley to CHOP’s emergency department for an Upper GI series. She wanted the Upper GI done during one of Oakley’s "episodes." Oakley continued to forcefully vomit yellow fluid the entire 60 minute ride to CHOP. In spite of the vomit, his stomach remained soft and he was smiling. As we waited in the emergency room, Oakley spit up green for the first time since the volvulus on the day he was born.

During Oakley’s Upper GI test, I stood in the room and watched as the contrast refused to move through his digestive system. At that moment my stomach dropped. I knew this meant that my poor baby had been suffering for months and was going to need surgery again.

We soon found ourselves in that familiar OR hallway, once again kissing our baby goodbye as they carried him into surgery.

After the second longest hour of my life, the surgeon came out to talk to us once again. He said that scar tissue had undone the first Ladd’s procedure and that Oakley had likely been having intermittent bowel obstructions and pain for the passed three months. Somehow Oakley had managed to escape any permanent damage to his intestine. After three days we were able to take our precious baby home again.

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After his second surgery Oakley was a new baby. He was calm and happy. His appetite doubled overnight. Oakley was followed by the pediatric GI for about a year to help deal with reflux and constipation. He’s now a healthy toddler who no longer needs any specialists or medications.

Oakley’s second surgery was very hard on me. After bringing him home, I was terrified every day. I didn’t believe anyone when they told me he would be ok. I truly thought I was going to lose him. I analyzed every single spit up for hints of yellow. I thought he was obstructed each day he didn’t poop. Whenever he cried I worried he was crying in pain. I made my husband reassure me constantly because I wasn’t able to reassure myself.

One day I was talking to my mom and she said “You need to forgive yourself for whatever you blame yourself for.” I broke down in tears. I hadn’t realized how upset I was with myself for not getting Oakley help sooner. I felt so guilty that I was a nurse and still hadn’t realized how sick my baby was.

Time has helped ease my fears the most. I’ve gone from thinking about Oakley’s surgery constantly to sometimes forgetting it even happened until I catch a glimpse of his little scar. I’m in a much better place now, and I’m sure it has to do with how well he is doing. Looking at this happy, active little boy, you would never know how rocky those first four months were.

 

If you would like to share your experience with intestinal malrotation, please send us an email for more information.