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

Stories

Intestinal Malrotation Stories

Nolan's Intestinal Malrotation Story

IMFNolan4.jpg

One evening shortly after our son Nolan’s third birthday he woke up screaming. It was a scream unlike anything I’d ever heard before. My husband and I were watching TV at the time, and rushed to his bedroom. We found Nolan completely soaked. We couldn’t tell if he had wet the bed or was sweating profusely. His skin looked as pale as could be.

Nolan started to vomit right away. I knew something was wrong and that I needed to take him to the emergency department immediately. As I tried to put Nolan’s shoes on his feet he continued to vomit which consisted mostly of milk he’d had before bedtime.

As Nolan and I left for the hospital that night, we had no idea what a rollercoaster ride the next few months would be.

We arrived at our small town emergency department 15 minutes later. Nolan kept asking for water and would take a sip then instantly throw it back up. The doctor in the emergency room thought Nolan might have the flu, so he gave Nolan gravol to try and settle his tummy. Nolan was so uncomfortable he had trouble sitting still. When he couldn’t keep the gravol down the doctor decided to order an X-Ray.

The x-ray technician originally told us it looked like Nolan was just constipated. He had just had a large stool the night before so I thought that seemed off. Shortly after the doctor came in and told me he believed Nolan’s bowel was malrotated. He said he had only ever seen intestinal malrotation and volvulus once in his years of practice. He wanted to send us to a larger hospital 30 minutes away.

We arrived at Lethbridge Regional Hospital by ambulance where Nolan was quickly accessed. The surgeon said he did not feel comfortable operating on Nolan as he did not know what he would run into once he opened up. At that point I didn’t really know what intestinal malrotation and volvulus was and I couldn’t understand why they weren’t just fixing it right away. They called Alberta Children’s Hospital in Calgary and told them to prepare for our arrival.

We got back in the ambulance and began the two hour trip to Calgary. Nolan was in his carseat the whole ambulance ride. He was so uncomfortable. He kept feeling the need to vomit, but at this point nothing was coming out. I felt so powerless. I couldn’t hold him or comfort him. I couldn’t do anything to help. It was the longest ride of my life.

At 6 a.m. we arrived in Calgary. Nolan started to decline quickly after our arrival, he become lethargic and his eyes started rolling around. Nolan was quickly surrounded by people who began taking his vitals and starting IV lines. They moved me to a chair so I could still see what was going on and a social worker kneeled down beside me to explain who every doctor in the room was. I was a mess. By 6:30 a.m., just eight hours after Nolan originally woke up screaming, he was in surgery.

My husband arrived while Nolan was in the operating room. Two hours later the surgeon came to update us on Nolan’s progress. She told us how lucky we were to have arrived when we did. The quick diagnosis the first doctor made based off Nolan’s x-ray, as well as how quickly he acted to have Nolan transferred, had saved Nolan’s life. Nolan’s bowel had lost circulation and had been dying off at a rapid pace. If we had waited any longer Nolan wouldn’t have made it. At that point Nolan had 200 centimeters of small bowel left. The surgeon said they had created a stoma hoping that some of Nolan’s damaged bowel would pink up and regain circulation.

Nolan was transferred to the PICU to monitor his condition and remaining bowel. The surgeon told us we should prepare for a long hospital stay.

The next couple of days were rough. Nolan needed a lot of pain medication which made him unresponsive. He had a breathing tube and lines going into his arms and feet. Three days after his first surgery Nolan’s team made the decision that he needed more of his bowel removed. The part of his intestine connected to his stoma was not pinking up and regaining circulation as they had hoped it would. Nolan went in for his second surgery and ended up needing an additional 20 centimeters of bowel removed.

After Nolan’s second operation his surgeon felt more confident in the viability of Nolan’s remaining bowel. We spent six days in the PICU, then Nolan was transferred to the regular pediatric floor.

Nolan absolutely despised his new ostomy bag. He’d just been potty trained a few months before, and was now was stuck in a hospital room with an ostomy bag, being told to pee in a diaper. He was not impressed. Over the next eight weeks Nolan had therapy to try and help him walk again. He was so weak and also hated the feeling of the ostomy bag hanging off his belly.

IMFNolan5.jpg

As Nolan regained his strength, I started looking forward to going home. Those dreams were quickly put aside when Nolan started vomiting again. He had an NG suction tube put back in to help relieve the pressure on his tummy. Because the output of his ostomy had decreased, Nolan’s surgical team decided to try and dilate his stoma to see if that would alleviate the problem. Nolan continued to vomit and have low ostomy outputs. Something was obviously very wrong. His team made the decision to go in for exploratory surgery to find the cause.

They said that if everything looked ok during exploratory surgery, they would attempt to reconnect Nolan’s intestines so he would no longer need an ostomy. This was such a huge moment for me in Nolan’s recovery. I was happy about his progress but also terrified as I did not know how he would do after reconnection.

Nolan’s third surgery ended up taking much longer than the expected two hours. When they opened Nolan up his bowel was tight like a baseball. So much scar tissue had formed, they had to be extra careful when detangling his intestines. Some of his bowel was so restricted by scar tissue and adhesions, the surgeon had been forced to remove another 22 centimeters. On a positive note, she had been able to eliminate his ostomy and reconnect his intestines.

IMFNolan3.jpg

Nolan started walking the day after his third surgery and immediately seemed so much stronger then he’d been before. When all three surgeries were said and done, Nolan was left with about 50% of his small bowel. He lost his terminal ileum, ileocecal valve and a portion of his large bowel.

Nolan was still unable to consume much by mouth, and relied on total parenteral nutrition (TPN) for 20 hours a day. Nolan’s team decided it was time to challenge his digestive system by starting nasogastric tube feedings. As they increased Nolan’s tube feedings, they were able to decrease his TPN to 12 hours per day.

To prepare to bring Nolan home my husband and I needed to be trained to take care of him. The GI team at his hospital had a program called CHIRP (Children’s Hospital Intestinal Rehabilitation Program). For two weeks we spent two hours a day with one of the CHIRP nurses. They taught us how to do CVC dressing changes, spike TPN bags, prime tubing, operate the pumps and order all the supplies we’d need. They also helped us go through various “what if scenarios.” Our training was so well done. We also knew that when we went home they were just a phone call away. We felt ready!

Then we hit another roadblock. We noticed Nolan had blood in his stool. Upper and lower GI scopes were performed, and it was discovered that Nolan had an actively bleeding ulcer. The doctors clamped and cauterized the ulcer, pulled Nolan’s NG tube and three days later we were finally on our way home!

After 131 days in the hospital, going home was a little bittersweet. Nolan was happy but at the same time he had created some pretty amazing relationships with his nurses and doctors. Nolan’s biggest excitement was seeing his sister and his toys! As soon as we got home we sat down, hooked Nolan up to his TPN, and just played.

I was a bit of a mess for the days, weeks, months that followed returning home. I cried daily. I was so overwhelmed with being home and having a medically fragile child. I missed our nurses and the reassurance of our call bell if I had a question or wanted a second opinion on something that concerned me. At home I was constantly worried and thinking “what if.”

IMFNolan6.jpg

Nolan continues to amaze us and his medical team. Four months after returning home he was able to be weaned off of TPN, and is now completely line free. He’s eating well, gaining weight and adjusting to his new “plumbing.” He has another ulcer at his anastomosis site, which we continue to monitor. Otherwise he is a healthy, happy four year old who continues to show us that no matter how crazy that rollercoaster was, he will continue to push forward and ride it.

 

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