By Benjamin R. Karney
My life turned around and improved when I pierced my daughter’s skin for the first time. She was 5 years old. Due to her immune deficiency, she had received hundreds of needles by that point, always from nurses, and always in hospitals or doctors’ offices. For a dad with no medical background (I never even took high school biology), leaving the responsibility with the professionals felt appropriate. Piercing her skin myself seemed the reverse of everything I had hoped to be as a parent, and I wept the first time I did it.
Since her diagnosis of common variable immune deficiency, we had been driving an hour to the hospital once a month for her intravenous immune globulin (IVIG) infusions. The infusion room nurses were experts, and we loved them, but we were not their only patients. After slogging through traffic, we had to wait for a blood draw, and wait again for the IG to be prepared and the pump to be programmed. Then, after hours of VHS videos, fluorescent lights and vending machine snacks, we stumbled, exhausted, back to our car in time for evening traffic. Those were long days, a monthly interruption that we accepted because we had no other options.
When our immunologist brought up the possibility of shifting to weekly subcutaneous IG (SCIG) infusions that we could administer at home, we were skeptical. Did we want to think about infusions that often? Maybe it was better to keep our daughter’s treatments in the hands of the professionals. Maybe it was better to keep her infusions separate from the rest of our lives.
Continued difficulty with finding a vein settled the question. To avoid installing a port in my daughter, we opted for the SCIG route and found ourselves being trained in our own kitchen by a wise and patient home health nurse. Soon, I was flicking a syringe to get the air bubbles out. Soon, I knew the tricks to getting the last precious drops of IG from the vials (injecting air makes it easier to get the fluid out). Soon, I was programming our own pump, adjusting the speed and monitoring the volume on a device I had previously ignored. Soon, I was doing what I never wanted to do: piercing the skin of my child.
And instead of taking over our lives, SCIG gave us our lives back. Our daughter, now 11, gets her infusions every week, but at whatever hour is convenient for her. She programs her own pump, and carries it with her in a small purse. She does not visit hospitals much - the occasional checkup with her immunologist is all. Instead, she gets infused while doing homework, going shopping or watching a movie. What was once a chore has become routine, even mundane.
The change is profound. Instead of something being done to her, an infusion is now something our daughter does to take care of herself. The difference was never more striking than during the holidays, when a big party was scheduled on an infusion night. Our daughter wore her pump, and halfway through the party stepped away from the kids’ table so I could disconnect it. When I returned to the party after putting it away, I found her back at the kids’ table, surrounded by a ring of girls, all listening open-mouthed to her explanation of her pump and what it does. “Aren’t you scared to get poked?” “Nah, it’s no big deal.” And I wept again for my little girl whose infusions are a part of her life, but not what defines her - something that makes her brave and keeps her healthy, instead of sick.