Ivar's Intestinal Malrotation Story
Before my son was born I had never heard of intestinal malrotation. I had no idea what the repercussions of a midgut volvulus could be.
My third child and only boy, Ivar, was born on August 13th. He was beautiful. He had blond furry cheeks and pointy elf ears. We brought him home a few hours after his birth, and for the next five days we snuggled and loved on him. There was hardly a moment he wasn't being held by someone.
Several things we noticed about Ivar concerned us. He pooped very frequently, more than our girls had. His poop looked abnormal to us, it was brownish green and cottage cheese textured. It seemed strange enough that we googled what newborn poop should look like. Ivar also spit up frequently and often choked a bit after every feed. He was very sleepy, and we had to wake him to eat regularly.
On August 18th he had his newborn check up. We mentioned all of the symptoms that concerned us. The PA listened to his abdomen, as my husband in his good natured way, reiterated how weird Ivar’s poop was. “Yes, all babies are different, they can be that way,” the PA said. He was our third child, we knew this to be true, but something still didn’t seem right.
After that we went directly to a lactation appointment which Ivar wouldn't wake up for. I asked the lactation consultant if she thought he was okay. Neither of my girls had been that hard to wake up. It didn’t seem normal to me. She seemed reluctant to say anything definitive about the way he was acting. I asked her if I should take him back to the doctor, if this reluctance to wake up was as concerning as I felt it was; she shrugged and said all babies were different. He wasn't the first baby she'd seen that wouldn't wake up for an appointment. I also asked her to look at his spit up during the appointment; it was a yellow brown color. She just shrugged and said it was a variation of normal. We headed home, exhausted from toting a toddler, kindergartner and newborn to a day full of appointments.
That night Ivar got fussy at dinner. He passed a very large amount of gas, which seemed painful for him. This gas was louder than anything I had heard before, and it alarmed me. I was having hot flashes and was told by my midwife that I should go to the ER to be checked out. Ivar finally calmed down and seemed content. I decided there was no way I was going to rock the boat and drive him 40 minutes back into town with me, just so I could go to the ER for hot flashes. My son needed to rest. We snuggled peacefully on the couch for the remainder of the evening.
That night he didn't pee. He wouldn't eat. The next morning his spit up was greenish-yellow. We took a picture, put him into the car and drove to first care.
We were third time parents bringing our newborn to the doctor for spitting up, we made fun of ourselves as we drove. But even as we laughed, there was no question to either of us that something wasn’t right. We arrived early and waited in the parking lot for first care to open.
My husband noticed that since leaving the house Ivar’s belly had become round and hard. First care took Ivar’s temperature with three different thermometers. It was so low, they thought the thermometers were all broken.
I fed Ivar during the exam, when he ate I felt some excitement thinking that he might be starting to feel better. The physician stepped out to make a phone call. At that point our beautiful son, started throwing up and gasping. After that he became ill very quickly. One minute he was an interactive baby and the next he was so obviously sick. His eyes stopped tracking, they actually began rolling around. We called the doctor back into the exam room, he looked at Ivar, but didn't appear alarmed. He said he was still waiting to hear from another doctor, then left the room.
I started pacing back and forth, I was so upset at that point. We waited a minute then just ran right out of there. The ER wasn't far from first care, so I held Ivar in my arms while my husband drove.
By the time we got to the ER Ivar was noticeably cold, you could feel it through his blankets and clothes. He was put directly onto a warmer, and from then on I felt like he was in as good of hands as we could get. One of the first questions we were asked in the ER was if Ivar had been shaken or if he could have been dropped. We knew that wasn’t possible. They did blood work to check for a bacterial infection and an x-ray to check for an intestinal obstruction. The x-ray came back negative, so they began pursuing a bacterial infection as the cause. We showed the pediatrician the picture we had taken that morning of Ivar’s greenish-yellow spit up. As a result of the photo, they ordered a barium swallow to check more carefully for an obstruction. It showed a blockage right past his stomach.
After diagnosing Ivar, it took nearly three hours for the neonatal air nurse to fly to us in Fairbanks, Alaska, prepare Ivar for transport and arrive at the hospital in Anchorage, Alaska. After arriving, Ivar was rushed into surgery, but by the time he reached the operating table his entire bowel was dead. The surgeon and neonatologist came out to tell us there was nothing left they could save. Ivar’s volvulus was right underneath his stomach, there wasn’t even a centimeter left. Ivar was still on the operating table, and we were given five minutes to decide if we wanted them to try and keep him alive or let him go.
They told us he wouldn't live more than a few years if we chose to keep him here. His life would be full of pain, surgery and life sustaining treatments. He wasn’t going to get better.
When we became parents we signed up for long nights, public tantrums, poopy diapers. Unknowingly, we had signed up for this too. The pit of parenthood. Knowing when to make a choice on behalf of our children and knowing when to let them take the lead. We knew we would leave that hospital to a life full of regret either way. Our fate would be the same no matter what, but his wouldn’t. There was a safer, less painful, option for our boy. In that unfathomable situation it meant dying.
That night, we held him. We talked to him. We made videos for his sisters back in Fairbanks. In those videos he still opened his eyes when my husband or I started talking to him. The neonatologist took pictures of us with him. I pumped for the last time, while they unhooked Ivar from everything. My husband and I laid down, Ivar between us, and we cuddled him until his body died. It was peaceful and absolutely terrifying. Then we left. Which felt impossible, but somehow we did it.
We didn’t know how to tell his sisters what had happened. Our oldest had been at his birth, she had cut his umbilical cord. They both adored him and had been waiting for him for months and months, they were so excited to be his big sisters. Ivar’s nurses suggested we speak to someone from palliative care; she got up in the middle of the night and drove in to help us figure out what to say to our girls.
It wasn't until days later, back in Fairbanks that we were formally introduced to the terms intestinal malrotation and midgut volvulus. We googled it and found out it wasn’t particularly rare. We saw story after story of children surviving and living full lives with some sort of functioning digestive system. Those were dark days, wondering if Ivar could have made it too. We questioned our decision so much, I wanted to crawl out of my own skin. During those dark times, the neonatologist called to check in. We were reminded that Ivar’s entire bowel had died. If there had been anything to work with, it could have made a difference, but there wasn’t. We knew that in the hospital but we needed to hear it again. Ivar would not have had a story like some of the ones we had read.
In hindsight, more knowledge, particularly in the doctor’s office during his newborn check up could have made a big difference. They routinely screen babies for much rarer disorders, so doctors and parents having more awareness of the signs of intestinal malrotation and volvulus seems attainable to me. The biggest difference would have been us trusting that we knew something wasn't right, we knew all babies were different, but we also knew that what Ivar was doing worried us. We wanted to believe the doctors who said it was normal, but we never felt convinced.
We have since had both of our daughters screened for malrotation. Although a genetic link has not been proven, we didn’t want to take a chance. I am pregnant again and deciding if I will put this little baby through the testing process too.
As we prepare to become parents for the fourth time, I have so many questions. Why hadn’t we heard of intestinal malrotation? What’s my duty after this? Should I be spreading the word about it? Should I be trying to raise money and support our local pediatric unit? Should I be helping other families through loss? But honestly, I’m too tired to do any of those things at the moment. Maybe when I find my feet again I’ll have some clarity, but for now keeping my little family above water is all I have the energy to do.
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