Over the past couple of weeks at Wednesday’s Transplant Clinic, we have met two other families who have gone through infant heart transplants. Now, those babies have grown up to be kids who are 10+ years old, leading regular lives. The little girl went to Toronto to have her transplant. And the little boy had his down in California. It was very inspiring to hear these stories and know Addison has just as bright of a future ahead of her.
A lot has changed in the past decade in transplant research. For example, one of the transplant babies was on an entirely different cycle of medications for the first five years. Tacrolimus, that very important anti-suppression drug with the pesky up-and-down levels, was only approved by the US FDA in 1994 for liver transplants. Now, it’s the primary drug for virtually all transplants and it’s considered the key to the dramatic increase in the success of transplants.
One of the moms told us about the Children’s Organ Transplant Society , started by another transplant mom. It reminded me of something very important: “…getting an organ transplant is not a cure but is instead the best possible medical treatment. As well, living with a transplanted organ means that your child will always be under medical care, have dietary restrictions, need medication and may need extra support at school and in the community.”
Yes, all that is true but I don’t really think of Addison as a sick baby. She doesn’t really look or act like one. However she does need special attention other babies don’t, and she will need that care for the rest of life. So in between the meds and appointments, as Aaron summed it up on one of our many drives to the hospital, she’s just like any other kid, except with a new heart.
Elaine, Aaron and Addison