Harrison’s Story

Harrison was born and everything was perfect, until it wasn’t. The doctors called Harrison their “healthy baby,” but 48 hours after being discharged, we found ourselves driving to the ER. Harrison started tensing up and turning red. We believed this to be gas, but it didn’t stop. We tried various gas treatments, until a drop of blood crept from his nose. At this point, we rushed Harrison to the ER. Harrison was 5 days old. We made it to the ER and things quickly digressed. He began turning blue and violently threw up blood. We were admitted to the PICU. Harrison’s oxygen continued to drop until he was eventually intubated. It was also discovered Harrison was having seizures. I remember so vividly standing at Harrison’s bedside while he seized singing “Jesus loves me.” The verse of the song, “for they are weak, but He is strong” had a whole new impact. A nurse came in and heard me singing. She told me, “you are calling the angels down.” In that moment, although I was still more terrified than I had ever been before, I had peace we were going to get through this horrible trauma in our lives. However, Harrison was still not doing well. Within 24 hours from arrival, the decision was made to life flight him to a more specialized children’s hospital. His dad saw him off to the helicopter while I went back to our house to throw a change of clothes in a bag. 

My family drove us 4 hours north to meet our son that night. I truly believed we were making that drive to watch him die. I prayed we would make it in time. When we made it to the hospital room, Harrison was sedated. I was so relieved he wasn’t in pain anymore. The attending doctor came in and spoke with us. He gave us more hope for Harrison than we thought possible. We spent the next two weeks in the NICU watching medical teams file in and out. Harrison ultimately went through 4 spinal taps, an MRI, several EEGs, multiple viral and bacterial panels, and so much more. Harrison was steadily improving, but no one could figure out what caused his issues. All of the doctors were in agreement- it was some kind of infection gone septic. Our baby boy was sent home on phenobarbital to control the seizures. 

When we made it home we were overjoyed, but a nervous wreck. I couldn’t sleep at night for fear Harrison would stop breathing. I had a full blown panic attack because someone coughed near Harrison. It was hard not knowing if or when Harrison would have another “episode”. About a week later, we received “the call”. Harrison had a positive result on an epilepsy panel for Pyridoxine Dependent Epilepsy (PDE). We had absolutely no clue what PDE was, but we were told to start B6 immediately. When I realized the full blown implication of what PDE meant, I felt so alone. I had no help from the doctors. I remember crying in their office wondering what I would feed my child (we adopted the low protein diet). The only thing I was told by the doctors was, “you can order medical food.” After a period of grieving I got to work. I started reading everything I could get my hands on. I was determined that my child was going to have the best life I could give him, although I wasn’t sure what that life was going to look like yet. I was able to get in touch with a mom on Facebook whose son was about a year older than Harrison. She gave me hope my son could have a “normal” life. I also found refuge in the Phenylketonuria (PKU) community. I discovered a multitude of resources for a low protein lifestyle through this group of people. I was even connected to a Facebook page specializing in low protein diets in Disney World. As an avid “Disney adult” I was overjoyed to find my baby could enjoy low protein Mickey waffles. Finally, I found encouragement through Curtis Coughlin. He spent an hour speaking with me on the phone. He was so knowledgeable, and had so many of the answers I was looking for. 

Harrison is such a bright light in our lives. Harrison is 2 years old now and has been off of the phenobarbital for over a year. He has been seizure free since his initial hospitalization. With all of the trauma Harrison went through before his diagnosis, we weren’t sure if he would have mental development issues.  Although he has been behind in his development, Harrison has been steadily progressing. He is extremely social and loves to pick on his big sister. I’ll never forget the day the neurologist said, “he is perfect.” 

Harrison experiences some weakness in the right side of his body. We are not entirely sure where this weakness stems from, perhaps seizure damage from before the diagnosis. However, the weakness has vastly improved. Harrison goes to physical therapy twice a week and occupational therapy once a week. He works so hard; the physical therapist believes Harrison knows they are helping him. He is crawling and walking with the assistance of a medical walker. 

Finally, Harrison seems to be doing well with the low protein diet. Harrison is even eating 9 grams of whole protein a day, a number I never thought he would see at this young age. His favorite snack is Goldfish and he loves potatoes. Harrison’s future may look a little different than others, but It is very bright. 

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither reap nor gather into barns, and yet your Heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life” Matthew 6:25-28