We had our first baby- a boy- on a Friday evening in Spring of 2010. We were thrilled with how perfect he was, admiring every finger and toe, and gladly took him home after the required two-day stay in the hospital.
When he was five days old we woke up to a baby that refused to wake up and eat and had a temperature under 94 degrees Fahrenheit. I remember hurrying out the door knowing we were going to get earth-shattering news. We rushed to the doctor’s office and watched the reaction of the medical staff. While we were at the doctor’s office Micah’s newborn screening came back with an abnormal metabolic reading. I had never heard of newborn screening so that didn’t mean much to me but our doctor immediately contacted the closest children’s hospital and our local ER. We rushed our baby to the ER where they attempted to stabilize his temperature while we waited agonizing hours for him to be transported to the children’s hospital.
The children’s hospital didn’t give us much hope. They did tell us that they thought he had Isovaleric Acidemia and gave us some paperwork explaining the condition. Then we waited. We waited overnight when they intubated him. His body was struggling to expel the extra acid and it wasn’t working. We waited the next morning while they put him on medication to stabilize his blood pressure. Then a new resident came on shift and called to tell us that she wanted to transfer him to Cincinnati Children’s for further treatment.
We went back to see Micah one more time before they transported him to Cincinnati. I remember standing there crying and looking at my baby. Then I realized that the resident was standing in the corner of the room and she was crying too.
When we arrived at Cincinnati Children’s Micah had been there about thirty minutes. There were medical teams waiting on us to approve procedures to perform dialysis to help clean the acid out of his blood. The risks were significant but they had a plan in case things went wrong. They primed the machine with blood since he was so small and started dialysis. It took three tries before his ammonia levels stayed level when they stopped the dialysis. We did a lot more waiting. Waiting for him to come out of his coma. Waiting for him to get up to full feeds. And then waiting to be discharged. When we were two days out from being discharged Micah started having arrhythmias and throwing up his food. It turned out that he had pyloric stenosis. When they did the pylormyotomy to correct the pyloric stenosis they also placed a g-tube for precautions against illnesses.
Treatment of metabolic disorders requires that the patient receive a certain amount of protein every day. The g-tube allowed us the option to give Micah his formula if he were ill or he didn’t want it. And it turns out he didn’t. Instead of just using the g-tube for “emergencies” we used the g-tube every time we fed Micah for over a year. When he was eighteen months old he was drinking his formula on his own and he loves it now.
Micah’s five and a half now. We are homeschooling kindergarten and he’s in speech therapy. His g-tube has been out over a year now and he’s trying a new formula. We are very grateful for all that Cincinnati Children’s, and specifically Dr. Andrew Burrow, has done for our family.
Leave a Reply