Intestinal Malrotation Foundation
Spreading Awareness and Offering Resources to Families Dealing with Intestinal Malrotation

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Intestinal Malrotation Stories

Chaz's Intestinal Malrotation Story

Chaz was born at 39 weeks a little after midnight on June 26. My fiancé and I were first time parents. I had been nervous about becoming a new mom, but everything seemed perfect in the hospital. Chaz latched on and fed without any difficulty. We were discharged the very next day and so began our journey as new parents.

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Chaz hadn't spit up in the hospital, but as soon as we got home he began to spit up after each feed. In the beginning his spit up was white and seemed like a small amount. There was nothing unusual about it and we weren’t concerned. As his first day at home went by, his spit up started transitioning to yellow then a bright chartreuse-neon color. Chaz’s spit up also became forceful and projectile. It was at this point I started to worry that something was wrong with my baby.

We called the pediatrician who we had just met for the first time 24 hours earlier. She recognized right away what the implications of bilious vomit could be. She instructed us to go the hospital immediately. We couldn’t have chosen a better pediatrician. When we arrived at the local emergency department there was already a room ready for us that had been ordered by her.

The hospital didn’t do any tests or tell us what might be wrong with Chaz initially. They just told us they were monitoring him to see if the yellow-green colored spit up would clear on it’s own. They gave Chaz an IV and inserted an NG tube. Chaz remained so calm the entire time, he never seemed to be in any pain. He barely cried and spent most of the time sleeping.

Several hours later they broke the news that an ambulance was going to take us to UC Davis Children’s Hospital an hour away. I was already emotional, but I broke down when I heard Chaz was being transferred. I knew it must be serious if they were sending an ambulance. The nurses assured me that a children’s hospital would be the best place to receive the care he needed.

During the ambulance ride I was very scared. No one had been able to disclose what was going on or what they thought might be wrong with Chaz. We arrived at UC Davis Children’s Hospital around midnight and Chaz was rushed to the radiology department. The radiologist finally explained that they were looking for an intestinal obstruction. He said they were going to have Chaz swallow some contrast while performing an upper GI series to see if Chaz had a blockage. The radiologist had me stand behind a glass window so I could see what was happening. When the test was done he pointed to a little bulge on the image and said it was where the contrast became blocked. This blockage meant Chaz had intestinal malrotation with volvulus and would need immediate surgery.

I broke down and started crying again. The nurses were so emotionally supportive. They hugged me and stayed by my side as they reassured me that Chaz would get the best care possible. The surgeon arrived soon after. I could feel his sense of urgency to begin the Ladd's procedure right away. He said we had no time to waste.

After they wheeled Chaz away to surgery my fiancé and I sat in the waiting room trying to soak it all in. We were so blindsided by how quickly everything had happened. The surgeon had given us some pamphlets on malrotation, volvulus and the Ladd’s procedure. As we waited for an update we educated ourselves as much as we could.

Eventually, we were so exhausted that we both fell asleep. At 4 am the voice of Chaz’s surgeon woke us up. He greeted us with a warm smile and told us everything went smoothly. The surgery had been a complete success. Because of how quickly the pediatrician and surgeon both acted, there were no complications and Chaz’s bowel had not yet become necrotic.

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We headed to the NICU to see Chaz. The nurses there gave us so much emotional support. They answered every question and showed such patience with us. They made sure we understood Chaz's schedule for recovery. They said that first we were waiting for the NG tube to clear up which would mean that Chaz’s digestive system was beginning to function again. After it cleared, Chaz would be able to start feeding by mouth. Once he was able to eat, we’d need to make sure he was able to have normal bowel movements. After that he'd finally be ready to go home.

The first time driving home from the NICU without Chaz was heartbreaking. After everything we had just gone through it was so hard to leave him there. It helped to know he was well taken care of. Every day when we arrived to visit Chaz his nurses updated us with every detail we had missed during the night. He recovered well and even smiled at us when we talked to him!

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After 11 days of driving back and forth to visit Chaz during his recovery, we were finally able to bring him home for good. I was on edge for awhile after Chaz first came home. I couldn’t sleep, I was so worried. Every night I watched him until exhaustion finally took over. Slowly, after seeing him begin a normal routine of eating, sleeping and interacting, I became less worried. Every routine check up with his pediatrician has shown that he is right on track and healthy. The little battle scar on his tummy reminds us of how strong he is!

 

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