Nathan's Intestinal Malrotation Story

When my son Nathan was born he couldn't keep anything down. He would violently spit up formula and was diagnosed with reflux. Every time he spit up it was yellow and smelled like vomit. The pediatrician never gave us a referral to a gastroenterologist or any other kind of specialist. Looking back, I wish I had known to request one; a newborn with such a violent reaction to breast milk and formula should have warranted a GI evaluation.   

As Nathan got older the vomiting eased a little, but it never fully went away. About twice a month I would take Nathan to see his pediatrician but was always told he just had a stomach virus.

I was a stay at home mom for the first seven months of Nathan’s life, but due to financial reasons it ended up working out better for me to go back to work while my husband stayed home with Nathan. In between the frequent “stomach viruses” Nathan seemed like a perfectly happy and healthy baby.

The morning of December 30th as I was getting ready to leave the house for work, I picked Nathan up and he vomited all over me. As usual his vomit was bright yellow. I was already running late. I told my husband not to bother taking Nathan to the pediatrician unless he got worse, I knew they would say it was just another stomach virus.

While I was at work my husband called to say he was taking Nathan to urgent care. Nathan had continued to vomit and his temperature had dropped to 96. I left work and met them at the office where I found my sweet baby moaning in pain. I immediately picked Nathan up and tried to nurse him. After he drank a few gulps of milk I smelled something terrible. I thought “oh my gosh that can't be coming from Nathan.”

I brought Nathan and the diaper bag to a bathroom in back, leaving my husband in the waiting room. When I opened Nathan's diaper I was shocked to find his little body pulsing out diarrhea and blood. The blood was brownish-red and looked similar to jam or currant jelly. I knew something was seriously wrong. I ran out of the bathroom to the nurses station screaming and begging for someone to please help save my baby. When I looked at Nathan he was just rolling his neck and moaning in pain.

I carried Nathan to an exam room and laid him on the table. The room filled with doctors and nurses very quickly. Nathan suddenly stopped moaning and I started screaming. The doctors hadn’t realized I was still in the room and quickly moved me to a separate room away from Nathan. After being moved I was finally able to ask a nurse to go get my husband who was still waiting in the front unaware of what had happened.

After what felt like an eternity an ambulance arrived to take Nathan to the nearest emergency room where he was diagnosed with intestinal malrotation and volvulus. They spent the next few hours calling different pediatric hospitals trying to find one that could take Nathan and perform the life saving Ladd’s procedure he was in desperate need of. Every hospital in the area said no, they didn’t have any beds available. Finally, Lurie Children's Hospital in Chicago said they could take him.

It was December and the weather was horrible. The helicopter took two hours longer than expected just to pick Nathan up for transport. When they finally arrived we had to wait even longer for the weather to clear again. Because of the storm, the helicopter wasn't able to land at Lurie. It landed nearby and they planned to go the last 15 minutes by ambulance.

I rode in the car to Chicago with my in laws, mother and husband. I was in complete shock over what was happening and kept passing out. As we were driving I woke up very suddenly at 10:05 pm, feeling panicked I asked my husband what hospital we were going to because I couldn't remember. I called Lurie and explained I was looking for Nathan. I told them I was supposed to have gotten a call when they went into surgery, but hadn’t heard anything yet. I was put on hold and never reconnected to the operator.

The drive to Lurie should have taken two and a half hours, despite the weather we rushed and arrived in less than two hours. I immediately ran into the hospital with my mom and husband right behind me to ask the front desk where Nathan was. They said he was in room 1641 and we took off running to find him. When we got to the 16th floor the nurses stopped us and said we needed to go to the conference room.

I didn't knock when I walked in to the conference room, and I remember how shocked the doctors looked. They asked me to sit down but I couldn’t. I just kept yelling “Where is he why aren't you in surgery with Nathan?” The doctor finally said, “I'm sorry he didn't make it. His heart stopped in the ambulance, he didn't make it.” Nathan had died at 10:05 pm, the exact same time I had woken up in the car. The amount of time from his first vomit that morning to the moment he died was less than 13 hours.

When I heard the news I fell to the ground screaming. My husband eventually helped me up and we were led to Nathan’s hospital bed. He had been dressed in clean footie pajamas with his breathing tubes still in place.

A bereavement photographer came in to capture those last moments with our beloved son. My husband and I looked at each other while holding Nathan and agreed that someday we’d have another child, a rainbow baby who we’d name Oliver Nathan. We decided to have Nathan cremated because we didn't want him to be alone in a graveyard.

Nathan’s older sister Lyndzy was six at the time. She had been away visiting my family for New Year's Eve when everything happened. We decided it was best for her to stay a little while longer while my husband and I tried to cope without Nathan. My husband had been in the process of adopting Lyndzy, and our adoption day had already been set for January 12th. I contacted our adoption lawyer and told her what had happened to Nathan, she suggested pushing the date back, but I assured her that we desperately needed something good to happen in our family.

When Lyndzy came home from my sister’s house a few days later, she walked in the door, looked around, then asked where Nathan was. The hardest thing I've ever had to do was tell my six year old that her brother had died. We finalized Lyndzy's adoption as planned on January 12th, wishing Nathan could have been there too.

In the months after Nathan’s death we coped in a few ways. I pumped Nathan's milk and donated it to babies in need. We started trying for our Rainbow Baby in February, because we knew we needed a snuggly little baby to help us heal. We celebrated Nathan’s first birthday by planting a tree and getting memorial tattoos. A week after his birthday, I ran the Illinois marathon relay with my siblings while my aunt ran the full marathon in Nathan’s honor. There were so many runners wearing Team Nathan shirts, we could truly feel the love for our precious boy.

On August 28th we found out we were expecting our little rainbow. Oliver Nathan was born eight months later on April 19th, four days before Nathan's second birthday.

It's been really hard living on without Nathan. Having Oliver has helped us see joy again. Shortly after Nathan died, Lyndzy saw a cardinal and said "There's Nathan." Every time we see a bright red cardinal we stop and know Nathan has come to check on us.

We don't shy away from talking about Nathan or what happened to him. It wasn't until Nathan's third birthday that we connected with IMF. Finally, a group who understood and had dealt with intestinal malrotation and volvulus. Someone else who knew this condition and knew how truly terrifying it can be. After Nathan’s death we had gotten so many things from SIDS organizations, it was kind of them, but we knew what had taken our child. We felt so alone because no one had been able to connect with us and say "we have a similar story." After three years we finally have that.

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