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

Stories

Intestinal Malrotation Stories

Pearce's Intestinal Malrotation Story

My son Pearce came into the world perfect as can be. I had developed preeclampsia during our 43-hour labor, which lead to Pearce and I needing to stay in the hospital a few extra days for observation. When we got the news that we were finally being discharged, we were all thrilled!

IMFPearce1.jpg

The morning we were set to be discharged, Pearce began to have trouble latching to breastfeed. That was worrisome due to the fact that he had latched perfectly after birth. However, the lactation consultant in the hospital said it was normal. As we were preparing to leave the hospital that afternoon, Pearce had a massive, projectile neon-yellow emesis. As a pediatric nurse, I knew right away that this was not normal. I was terrified.

My heart started racing, but I tried to stay calm for my husband. We showed the post-partum nurse and the hospital pediatrician Pearce’s bright yellow emesis and an upper GI series was ordered. The pediatrician didn’t say specifically what she was looking for, just that she wanted to make sure Pearce's anatomy looked normal before sending him home. Due to the projectile nature, my immediate thought was that he might have pyloric stenosis since it is most common in white males.

I helped the radiology tech and radiologist during the upper GI by giving Pearce the bottle of barium. It was Saturday afternoon and the radiologist seemed rushed. During the procedure he made a statement that seemed bizarre to me, "this anatomy is not normal, but it's okay." That should have been a red flag.

A follow-up x-ray was taken an hour after the upper GI series. When I looked at the x-ray I instantly started sobbing. I had seen enough x-rays as a nurse to know that something looked wrong. It appeared to me as if Pearce’s stomach had trapped the barium; minimal if any had entered his intestines. I cried to my husband and told him that we should prepare ourselves that something was wrong with Pearce.

To my surprise, the pediatrician told us that Pearce was good to go home. I was shocked! I remember thinking to myself "I clearly am not an expert on x-rays." I inquired as to why she thought the emesis occurred. She didn’t have an answer but didn't seem concerned.

After we arrived home, Pearce stopped latching completely and we began to bottle feed. Over the next couple days he spit up large amounts frequently, however, it was not projectile or yellow. It appeared to just be formula. On Pearce’s fourth day home that changed and he began to have projectile emesis thirty minutes to an hour after every feed. The emesis was so forceful that sometimes it would shoot five to six feet across the room. In my heart I knew something wasn't right, but since the upper GI had been deemed 'normal', I was at a loss.

The next day, Pearce’s fifth day home, his emesis became neon-yellow once again. We informed our pediatrician and even brought Pearce’s blanket to an appointment with us to show her how yellow it was. After doing a physical assessment of Pearce, she thought he was healthy and experiencing constipation caused by anal stenosis. As a nurse who had only worked in acute care, I hadn’t had much contact with “healthy babies”. When the pediatrician said that Pearce's symptoms could be within the normal range for a healthy child, I believed her.

Over the next two days, Pearce's emesis became darker and darker, going from neon-yellow to the color of ground up kale. We had scheduled Pearce’s newborn photos for Friday, and in the middle of having his newborn photos taken, Pearce had the darkest green emesis yet. We didn't even finish the session, we immediately called the pediatrician and she got us in for an appointment that afternoon.

image3.jpeg

At the appointment, Pearce’s pediatrician contacted a pediatric surgeon I knew from work. I had great respect for this surgeon and I knew that he provided excellent and compassionate care. She told him that she believed Pearce was severely constipated from possible anal stenosis. In addition to vomiting, it had become increasingly hard for Pearce to have a bowel movement and he was clearly straining and in pain. Thankfully, the surgeon agreed to evaluate Pearce first thing the next morning. We were so grateful!

Overnight Pearce’s demeanor began to change, and by Saturday morning I grew beyond uncomfortable with worry. When the surgeon evaluated Pearce he was able to rule out anal stenosis. He read the radiologist notes on the upper GI which indicated everything was "normal" and felt that Pearce might be constipated, as our pediatrician had suggested. He recommended the same course of action our pediatrician did, which was a combination of pedialyte, prune juice and glycerin enemas to help create a bowel movement. 

We implemented the doctors plan of action, however, Pearce projectile vomited everything we gave him. I got in the shower, laid in the tub and sobbed for over an hour. During that time, I prayed harder than I have ever in my life. I decided that if Pearce had one more projectile emesis, we were going to the hospital. Around three p.m. that afternoon, Pearce had his final projectile emesis at home. By that time, Pearce's urine became amber in color, he was lethargic and his eyes were glassy. As a nurse and mother, I realized he needed to get to the hospital right away.

Due to the concern that Pearce’s symptoms were the result of being severely constipated, the hospital ordered a barium enema. During the procedure the radiologist didn’t say a single word. Several minutes after the barium enema was completed, the radiologist walked into our room and informed us that she had emergently consulted pediatric surgery. She indicated that the upper GI series Pearce had a week earlier had been read incorrectly and she was extremely concerned. She didn't go into detail and I was too shocked to ask how the first test could have possibly been read wrong. This was the first time that a physician seemed truly concerned for Pearce's life.

Minutes later, another pediatric surgeon that I worked closely with walked into the room. He stated that Pearce needed emergent abdominal surgery for intestinal malrotation and volvulus. I felt my eyes swell with tears; I thought my world was ending. I also thought, what the heck is a malrotation? Despite being a pediatric nurse and nurse educator, I had never heard of intestinal malrotation.

IMFPearce2.jpg

My husband and I went to the surgical area where the surgeon we had met with that morning was waiting for us. He came in on his day off to help with the procedure, a gesture I will never forget. He stated that the type of malrotation Pearce had was the rarest form, but it was the most treatable. My husband asked the surgeon if Pearce would be able to play sports and the surgeon said absolutely. They played down the scenario of what could happen if Pearce’s bowels were necrotic. Both surgeons sounded very hopeful that everything was going to be just fine!

While Pearce was in surgery, I personally knew every individual who was caring for him. I knew he was in great hands. The hospital was the only level I trauma center in the region and both surgeons had completed a multitude of Ladd’s procedures. However, sending my child to surgery from the PACU bay where I had cared for hundreds of children created a hurt that I did not know was possible. As silent tears fell, all I could do was pray that Pearce’s bowels were still alive.

Pearce was in the operating room for a little over an hour. The surgeon walked in with a huge smile on his face and informed us that no bowel had to be removed, the procedure was a complete success. He said that Pearce’s lymphatic system had been compromised, but he felt it would make a full recovery. No veins or arteries had been permanently damaged. We were so thankful!

Pearce spent six days in the pediatric special care unit and two days on the medical/surgical unit. There were many ups and downs during that time. Several days after surgery, he failed his first feeding. I thought I was going to faint when he threw up, I was so devastated. The surgeon wasn't worried at all and said Pearce just needed more time for his gut to 'wake up'. This is a phrase I had frequently stated myself to a multitude of parents, but I still worried that somehow Pearce’s bowel had become necrotic. Thankfully, the next day he did fantastic with his feeds!

We were discharged six days after surgery, we were elated. After arriving home, Pearce started acting lethargic. I took his temperature and it was 102.4. We brought him back to the hospital where they did a complete septic workup. This included a spinal tap, blood cultures and IV antibiotics. I felt so defeated and terrified that he had become septic. Thankfully, nothing grew on the blood culture and we were sent home 48 hours later.

IMFPearce5.jpg

We are so grateful that Pearce is thriving today! We are very aware that our story could have ended differently.

As a pediatric nurse and a pediatric clinical nursing educator I find the lack of education regarding malrotation and volvulus alarming. If only one person out of all of those who had contact with my son, including myself, had known that bilious emesis in a newborn was an emergent finding he could have been treated faster. Because of how quickly some cases of intestinal malrotation and volvulus can become fatal, educating those who first observe the condition is critical.

IMFPearce4.jpg

It has become my mission to educate my fellow nurses and nursing students about intestinal malrotation and volvulus. I would like them each to know that bright yellow or green (bilious) emesis in a newborn is not normal and should be treated as an emergency until proven otherwise. Despite ‘normal’ results on an upper GI or other diagnostic tests, intestinal malrotation could still be a possibility. Through education, it is my hope that medical professionals can more quickly diagnose intestinal malrotation and volvulus. Prompt diagnosis truly has the potential to save children's lives.

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