Dre's Intestinal Malrotation Story
We didn’t find out our son Dreagon, or Dre as we called him, had intestinal malrotation until he passed away at 11 years old.
It was October, and we’d just spent the day together as a family at the local pumpkin patch. It was a beautiful day. I remember watching Dre take a tractor ride, he always loved tractors. I also remember watching him stand next to the height chart and thinking how tall he had gotten over the last year.
When we got home that evening Dre began complaining of a stomach ache. He got sick a few times before bed, but it seemed like an ordinary stomach bug. When he woke up in the middle of the night with a lot of stomach pain, I decided to call a telenurse.
I informed her that Dre had no fever, had vomited a few times, and was complaining of severe abdominal pain. She asked if his vomit was brown or black like coffee grounds. I hadn't gotten a good look at it but Dre said it looked normal to him. The nurse also asked me to feel his stomach. His stomach felt firm but didn’t seem to be abnormally firm, he was an athlete so his stomach always felt that way. After about five minutes Dre’s pain passed and he seemed comfortable again. He used the restroom, said he felt better and then fell back asleep.
The next day Dre laid around a lot. I assumed he had a bad case of the flu. I had recently bought a new thermometer but thought something was wrong with it. It kept reading Dre’s temperature a couple degrees below normal. I contemplated taking Dre to the emergency department. He seemed more lethargic than he typically was when sick and it was starting to alarm me. Being the mother of three boys I remembered all the times I’d gone in the past and been told there was nothing that could be done for the flu except to let it run its course.
Later that afternoon Dre started to keep Gatorade and water down. He even asked for milk and I suggested he try a couple crackers. I was relieved to think he was starting to feel better.
An hour later he yelled for me from his room. He said he was hearing voices in his head. The minute he told me that I knew something was very wrong. Aside from the voices, he didn't look or act any worse in that moment. I started getting him dressed to go to the hospital.
As we walked toward the front door he suddenly collapsed. He was still breathing but had stopped responding.
We called 911 right away. The dispatcher acted like it wasn’t a big deal and told us an ambulance would be there soon. I just kept watching Dre’s back move up and down to make sure he was breathing. The first responder’s station was only 2 blocks away from our house but it felt like it took the ambulance forever to arrive. I kept telling the operator that we were only two blocks away but I still couldn't hear the siren coming. The operator kept telling me to calm down.
My husband and I carried Dre outside so the paramedics could get to him faster when they arrived. As we waited I looked up at my younger son who was standing at the front door watching everything, he looked so scared.
When the ambulance finally arrived, I could see the panic on their faces the second they saw Dre. They loaded him in to the ambulance and took off. My husband went to comfort our younger son while I jumped in the car and followed the ambulance to the hospital.
When I arrived the chaplain came out and started speaking to me right away. She said that while in the ambulance Dre’s heart had stopped beating. They had been able to restart it but they didn’t know what was wrong.
The doctors and nurses asked me the same questions over and over. What did Dre eat? Had he been injured recently? Did he have any medical conditions? Was he allergic to anything?
The hospital did several scans and bloodwork. It took them awhile to figure out Dre had intestinal malrotation and volvulus. The physician said that because intestinal malrotation and volvulus is so rare after infancy, she hadn’t thought to check for it initially. She noticed Dre’s malrotation on a full body CT scan. The scan found that a portion of Dre’s bowel was dead. He was in septic shock.
Dre remained unconscious and was moved to the intensive care unit. His doctors wanted to remove the necrotic bowel but could not get him stable enough for surgery. They couldn’t keep his body temperature up, he had all sorts of tubes and IVs, and had to be given blood transfusions. After two days they finally ended up operating on him in the ICU.
After surgery they still weren’t sure if Dre would recover. They needed to do a brain scan to see if he had any brain function left after the lack of oxygen on the way to the hospital. At this point I already knew in my heart that Dre was gone. A few days later the scan confirmed that Dre had no remaining brain activity.
It's hard to put into words how it felt to receive that confirmation. As a Christian, I tried to feel happy for Dre because I knew he was in the best place possible. But at the same time, how could I go on without seeing him, touching him, or hearing his voice again?
Dre had always had such a sweet disposition. I remembered over the years getting calls from his teachers about how he had gone out of his way to help them or how he had stepped in when a boy in his class was being bullied. I realized how lucky I was to have had Dre for 11 years. He had always made it his mission to help people, so I asked right away if his organs would be suitable for donation. I was worried he would not be able to donate because he had been septic. The doctors assured me that if organ donation was what we wanted, Dre would still be able to donate. My husband and I didn’t even need to discuss it. We both knew Dre’s giving personality, we both knew this is what Dre would have wanted.
Sometimes knowing Dre was an organ donor is the only thing that gets me through. I’m happy that through organ donation we were able prevent others from losing their loved ones the way we did. Dre saved four lives: a 14-year-old girl in the south received his heart, a 51-year-old man in Illinois received his pancreas and one of his kidneys, a 53-year-old man in Illinois received his liver and other kidney, and a young woman with cystic fibrosis received Dre’s lungs.
About a year after Dre passed I received a letter through the organ donation network from Auburn, the young lady who received Dre’s lungs. The timing was absolutely perfect. I had been having a rough week and was missing Dre very badly. Auburn’s letter was perfectly written and made me so happy. I sent a reply to Auburn through the organ donation network immediately. I included my name so that she would be able to reach out to me directly if she wanted.
Around the same time my employer offered me the promotion I had always dreamed of. The only problem was that it meant leaving Illinois and moving to North Carolina. I prayed and asked God to give me a sign if it was something I should do. I went to Dre’s grave and I said “give me a sign buddy.” Three days later I received a facebook message from Auburn. We talked more and I found out she lived in North Carolina. That was my sign!
Since relocating to North Carolina Auburn and I have become close. I feel like God and Dre handpicked Auburn to be in my life. She loves public speaking and so do I. She is the biggest sweetheart I have ever met and I have never seen someone so humble and grateful in all my life. Auburn and I have plans to speak at fundraisers for organ donation, cystic fibrosis, and hopefully malrotation.
Losing Dre the way we did was traumatic for the whole family. At one point Dre’s younger brother began having panic attacks where he would throw up and tell us he was dying. We brought him to the hospital and luckily got the same doctor that had taken care of Dre. She ordered an upper GI and was able to confirm that our younger son did not have malrotation. We were also able to talk to her for while about the night she took care of Dre which helped clear up some of the questions we had. It still seems crazy to me that Dre was perfectly fine and active one day, had flu like symptoms the next day, and then was literally in critical condition within a few minutes time. He had always been the healthiest kid, no signs whatsoever of intestinal malrotation until the volvulus that day.
If you would like to share your experience with intestinal malrotation, please send us an email for more information.