Intestinal Malrotation Foundation
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Intestinal Malrotation Stories

Isabelle's Intestinal Malrotation Story

At age four our daughter Isabelle had abdominal surgery for intestinal malrotation. In some ways we were blindsided by it, but deep down it was no surprise.

Isabelle was our first baby. When she was a few days old we noticed she seemed to cry and spit up often, but as new parents we told ourselves it must be normal. During Isabelle’s first month of life we started to realize something wasn't right. Isabelle continued to spit up a lot, it was always the color of formula, but it seemed more frequent than other babies. Sometimes she spit up so much she would choke on it. Her cries were loud and painful. There were days when she seemed ok, then the bouts of intense crying and pain would return. The pediatrician said her symptoms were the result of constipation and gas.

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As soon as Isabelle was old enough to talk she started complaining of belly pain. Sometimes it was mild and sometimes she’d have episodes that were so intense she would keel over screaming. The intense episodes of pain usually lasted a minute or two, then subsided. We started bringing Isabelle to the pediatrician during these episodes, but by the time we arrived at the office, the intensity we witnessed at home had always passed. The pediatrician remained unconcerned, but we knew something wasn’t right.

We became consumed by google and parenting forums in a search for answers. We switched pediatricians. We even went to the emergency department twice but they didn’t do a single test. They said Isabelle’s pain sounded like constipation and sent us home. Every interaction we had with a doctor left us feeling discouraged, alone, and honestly, a little crazy.

It wasn’t until we switched pediatricians for the fourth time that we finally got answers. Just a few short months after we began seeing Isabelle’s fourth pediatrician, she began experiencing one of her episodes of stomach pain. She was screaming, keeled over and holding her belly. She vomited one time, it had the consistency of water but with yellow-green tint to it. We headed to the pediatrician’s office for a visit. We prepared ourselves for one of the typical pre-recorded responses about gas or constipation that we had grown used to. Instead, as if her new pediatrician could see the anguish and exhaustion on our faces, she replied that Isabelle’s episodes had been going on long enough. She suggested we start with a barium swallow.

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It took four and a half years of pushing, but we were finally heard.

They scheduled the barium swallow for the following morning. I watched the look on the radiologist’s face as his eye caught something on the corner of the screen. All the techs in the room fell silent. Time seemed to stand still in that moment. My husband smiled down at Isabelle and stuck his tongue out at her, Isabelle stuck her tongue out in return. I could tell she was nervous but putting on a brave face, even at four she seemed to sense the concern of everyone around her. I felt a mix of fear and relief. I could tell we were about to get answers.

The radiologist said Isabelle had intestinal malrotation without volvulus. The next 36 hours were a complete whirlwind. Because Isabelle did not have a volvulus, she did not need to be rushed into the operating room immediately, but they still suggested we schedule surgery quickly. As we walked out of the radiology department, my phone began flooding with calls. Our pediatrician, the surgical team, hospital registration.

Surgery was scheduled for two days later. I was overwhelmed as they wheeled Isabelle to the operating room for an open Ladd’s procedure. I was relieved they had caught her malrotation before anything serious had happened but I was afraid I was making the wrong decision by scheduling her surgery so quickly. I hadn't had enough time to process all the information I’d been given. I pretended to be strong for Isabelle, but in reality I had no idea what was ahead.

After Isabelle’s surgery, her doctor came to update us in the waiting room. He said everything went well, Isabelle’s intestines were completely healthy and had just been in the wrong place. Isabelle was so strong and determined, she bounced back very quickly after her Ladd’s procedure. She was up and walking on the morning of day two and ready to go home on day four.

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Since surgery Isabelle has been so much better than before. I'm so grateful she is healthy but I'm angry it took so long for her to be diagnosed. I can't believe we were ignored by three different pediatricians on so many separate occasions. As first time parents we trusted them for guidance, but not one doctor thought to investigate further. I'm still trying to deal with the emotions surrounding it all. Isabelle still has some issues with constipation, but she sleeps better, eats better and is much happier. She loves to swim and do Taekwondo. She truly seems like a different kid.

 

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