Intestinal Malrotation Foundation
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Intestinal Malrotation Stories

Hope's Intestinal Malrotation Story

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Hope is our family's rainbow baby. When I held Hope for the first time, the most incredible calm washed over me. This tiny human made my heart feel complete.

On the way home from the hospital Hope vomited so much bright yellow fluid that I had to suction it out of her nose. My husband called her pediatrician as soon as we got home and was told as long as it wasn't projectile or green it was fine. “Maybe she gets car sick,” the pediatrician suggested.

That evening, after hearing more about what the pediatrician had said, I decided to call back. Her vomit had seemed projectile to me and the color was very yellow. I was met by the same on call doctor who was annoyed that a paranoid mother had interrupted her evening with nonsense. 

The next day we brought Hope to her pediatrician. She was a bit jaundice. She had not forcefully vomited again, but she did seem to spit up a bit after every feeding. The color was always the same bright yellow. We showed the pediatrician a picture of the vomit but she wasn’t worried. Since Hope had both wet and dirty diapers, the yellow color was brushed off as colostrum. The pediatrician advised us to return in a few days to check Hope’s jaundice.

On the morning of our next appointment Hope vomited again. Bright yellow as usual and a lot of it. The color and amount seemed odd, and I wondered if we should take her in early. We already have an appointment, what would showing up early do? I asked myself. My gut knew something was off, and I wanted to be overreacting.

On the way to the pediatrician Hope vomited in the car and it landed on her blanket. “Maybe she does get car sick,” I said to my husband.

At the appointment Hope had lost weight. Her jaundice had also worsened as her skin appeared very yellow. The pediatrician remained unconcerned about the vomiting episodes but was slightly worried about the jaundice. Since it was the end of the day on a Friday the lab was no longer open to check Hope’s bilirubin levels. The pediatrician apologized for the inconvenience as she explained we would need to go to the Children’s Hospital for labs. This inconvenience may have saved Hope’s life. 

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After a grumpy nurse checked us into the emergency room, the ER doctor talked us through treatment for jaundice. As he finished up he asked how everything else had been going which opened the door for us to mention Hope’s bright yellow vomit. As soon as we showed him the yellow stain on her baby blanket he leapt into action.

An upper GI series with barium was ordered. The radiologist had a grave tone in his voice as he told us Hope had a blockage in her intestines and would need surgery immediately. She was diagnosed with intestinal malrotation and volvulus. The surgical resident reassured us that the top surgical team had been paged and was on their way to the hospital so they could start surgery within the hour. He explained that if the tissue in Hope’s intestine was still pink she would likely have a good outcome. He wasn’t willing to discuss what would happen if the tissue was necrotic. 

The once grumpy nurse now comforted my husband and I with soft kindness as she wheeled us up to the surgical floor. We told Hope that the doctor would fix her boo boo and we would see her soon. I tried to memorize her sweet face right then and there. My husband held her and did the same. As we handed Hope to the surgeon, I wondered if we would have the chance to hold her alive again. The double doors to the operating room closed, and I was filled with a deep helplessness that I will never forget or fully shake. I began sobbing in a way I didn't even know was possible.

As we sat in the waiting room my mind played through nightmare scenarios. If she died, would we be able to donate her organs? Could I pump and donate my milk? What would we tell our 4 year old, so proud to be a big brother? Thank god we still had him. I don't know if we can make it through this. Can we make it through this? We have to make it through this. The phone hasn’t rung, that's a good sign right? Okay. Think pink, think pink, think pink.

When the surgeon walked into the waiting room several hours later the first thing he said was that they hadn’t needed to remove any of Hope’s intestines. He explained they were grey from the decreased blood flow, but had not yet become necrotic. Once untwisted, her intestines “pinked up” again. I immediately hugged him and thanked him. He replied “I didn’t do anything. You got her in front of me at the right time.” 

Hope was in the hospital for 18 days. Maneuvering the tubes to hold her was petrifying. We had a setback when Hope vomited forest green bile the first time we attempted feedings by mouth. It sent me right back to wondering if my son would get to be a big brother. We were told that her body was just not ready to digest food yet. 48 hours later we tried feedings again, much slower this time, and had better success. Between my husband, parents and I, we never left Hope’s side for more than 30 minutes at a time. The nurses and doctors were simply incredible and became such an integral part of our lives. They reminded us at discharge that Hope was expected to live a completely normal life after this rather large bump in the road. 

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After Hope was finally home I felt like I was living in two different worlds. The real one, where my husband would help our son hold his baby sister and we would all marvel at her cuteness. And the one that played in my mind, reminding me that I could lose anyone, at any time, even my children. One moment I was in reality, the next paralyzed by guilt in the throes of what could have been.

I constantly evaluated Hope. Was her belly soft? What color was her spit up? Did she feel warm? Was that a lump under her scar? Did she poop today? What was that noise she made? What if she gets sick again? What if she has another twist? What if I don’t recognize it before her intestines become necrotic? The what ifs were torture.

I became focused on that moment somewhere between the fifth and 12th weeks of my pregnancy when Hope’s intestines hadn't rotated correctly. I wondered, did I do this to her? I had slept on my stomach, took an antibiotic, and occasionally drank unfiltered water. Her doctor said it was nothing I could have controlled. I heard him but didn’t know if I believed him. I kept wishing I could go back in time and change whatever it was that happened.

It took awhile for me to get through those feelings. It’s been almost three years and every once in awhile I still flash back to the hospital. Now that Hope is old enough to tell us how she feels and I know the symptoms of malrotation and volvulus well, I am no longer fearful that I would miss another obstruction. Instead, I see myself as the most qualified person in the world to recognize an issue, should Hope ever experience one again.

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I am also no longer concerned with being seen as “that overactive mom.” I am who I am and I don't need a doctor to like or even respect me. I just need my children to continue to make this world a happier place, which means that as their mother I need to fight for their health. Finding a pediatrician who is proactive and never tries to calm me down or brush my concerns aside has been huge.

Hope is currently a rough and tumble preschooler who loves playing with her brother. She is obsessed with collecting rocks and puts them in her treasure box every day after school. The “all better mark” on her belly serves as a reminder that she is strong and healthy. I love watching her grow and will always be thankful for the moments we spend together, these moments are a gift we almost didn't have.

 

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