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

Stories

Intestinal Malrotation Stories

Rohan's Intestinal Malrotation Story

Our son Rohan was born after a healthy, uncomplicated pregnancy and we enjoyed a few wonderful hours together as a new family before our lives were turned upside down.

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At first everything seemed to be going fine. Rohan’s APGAR scores were good and they put him on my chest right away so I could admire his perfect little face. His dad cuddled him and provided skin-to-skin care while I was getting stitched up from the tearing I had experienced during the forceps delivery. Lunch, breastfeeding and a nap followed. Everything felt perfect.

The first sign something was wrong came when the nurse took Rohan’s temperature. After a few repeated measurements we were told he needed to be taken upstairs for closer monitoring. We had heard that newborns often need to be placed under a warmer after birth so we didn’t think too much of it initially. Overnight, it became clear that something wasn’t right. Rohan’s temperature stayed low and he began to spit up.

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We were grateful when the pediatrician ordered an upper GI panel (barium swallow) and requested an immediate transfer to a larger hospital. As my husband rode with Rohan to the hospital and I stayed back to recover, we remained hopeful that this would be something minor. From that point on everything was a blur.

The upper GI panel showed that Rohan needed emergency surgery. He had intestinal malrotation that had produced an obstruction, called a volvulus. The surgeons explained to us that they would untwist Rohan’s bowel, remove any damaged tissue, and perform the Ladd’s procedure. As long as the remainder of Rohan’s bowel “pinked up” after untwisting, there was a good chance he would be fine. However, they cautioned, if the bowel didn’t “pink up,” we would need to prepare ourselves to say goodbye.

While we waited for Rohan to return from surgery, we read everything we could find on malrotation, the Ladd’s procedure, risks, survival rates and on and on for hours.  

When the surgeon finally returned, the news was not good. After removing the damaged bowel, Rohan did not enough healthy tissue left to survive. The surgeon explained our options, we could let Rohan go or attempt to keep him alive on total parenteral nutrition (TPN). They brought in an expert on TPN feeding who advised us that keeping Rohan alive would be a long shot considering how little healthy tissue remained.

We were forced to make the most difficult decision of our lives. They brought Rohan back from the operating room and we held him in our arms for nearly 12 hours while we said goodbye. We spent time enjoying his soft baby hair, the little dimple on his cheek and his tiny fingers and toes. We imagined the little boy and man he would have grown up to be.

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Rohan’s death hit us both very hard. The rest of the year post-Rohan and much of the next year is still hazy in my mind. My husband and I both went back to work and we dealt with our grief by simply trying to get through each day, a few hours at a time.

I struggled with feelings of guilt and I wondered if there was something I had done wrong. My mind would idly flip through all the food and drink I had consumed and every activity I had participated in while pregnant. I also hated myself for not having enjoyed my pregnancy more. I had spent so much time focusing on how I would balance motherhood, a career, fitness and volunteer work. After Rohan died I wondered why I’d spent so much time worrying about these things.

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Eventually we found the courage to try again and after one early miscarriage followed by the longest 9 months I’ve ever experienced, our daughter was born. Raagini fills our days with laughter, love, and general toddler-ness but for more than a year after she was born, I was consumed by the fear of suddenly losing her. The journey through grief, pregnancy after loss and parenting after loss is unique and it’s not something the baby books and pregnancy classes could have prepared us for. Parents who go through this often find themselves isolated from their social circles in spite of everyone’s best intentions. We were fortunate to be connected to an incredible support program near our home in Seattle. We are grateful to the wonderful people we’ve met through this program as well as the unwavering support of family and friends.

Rohan lived only three days but he changed our lives in more ways than we could have ever imagined. He taught me about myself, brought our family closer and connected me to some of the most incredible people I’ve ever met.

After losing Rohan, I decided to help raise awareness for intestinal malrotation because I remembered sitting in that waiting room, barely functioning thanks to painkillers and exhaustion, but furiously reading everything I could find on intestinal malrotation in order to make a decision about the life of another human being. I remembered finding only a handful of stories and wanting to know so much more. How long did recovery take? Were there any other physical and cognitive implications of the surgery, recovery and TPN? What did a typical day look like for a child with intestinal malrotation or short bowel syndrome? The Intestinal Malrotation Foundation’s stories and repository of information will help parents navigate that impossibly hard time in their lives and also raise awareness about this condition.