By: Joseph P. Hillenburg
There are currently almost 2,000 children on the organ transplant waiting list in the United States, with many more children on waiting lists in other countries. In 2011, my son, Ben, was one of those children.
His life started just like “normal” children. Within a month, he was diagnosed with Dilated Cardiomyopathy, a condition that can be treated but not cured. The most extreme treatment is to receive a heart transplant. With children suffering from kidney and liver disease, it is sometimes possible to find an adult living donor, though not enough of these generous individuals step forward. And this is not an option for heart transplants. This means that somewhere, some child has given the ultimate sacrifice, followed by that child’s parents making the selfless decision to help others at what is the worst time of their lives.
It is to honor these donor children and families that National Pediatric Transplant Week was conceived, and to pay tribute to the children who benefit from these gifts. I tell people that receiving an organ transplant is unlike the treatment for almost every other chronic illness. What other treatment, outside of a TV studio, can bring someone from the verge of death to being reasonably healthy within weeks, and for many, leading an active lifestyle within months? Children are the ultimate expression of this phenomenon. Not only do they bounce back more easily – often like a light switch – but in many cases their untrained immune system better copes with issues of transplantation such as rejection of their new organ by their immune system.
Such is the case with my son. We were told he may have to wait for up to six months for a heart, and this when we were regularly awakened by alarms flashing, beeping, and buzzing in his Cardiac Intensive Care Unit room. Within three weeks of Ben being added to the transplant “waiting list” (which is anything but) in the United States, we were received what the transplant community refers to as “the call” – when our medical team informed us that we had received a suitable heart, which “matched” all of the necessary criteria. Because he was just a baby, this heart didn’t even share his blood type, but the rules of transplantation for children had only recently been modified to allow for this.
As a father, and as an engaged advocate, this is what keeps me going, to make the organ donation and transplantation system work better, which both can help Ben and people like him, and make better use of that precious gift from donors. Everyone can do their part to help, and all it takes is for you to become an organ donor. Your age doesn’t matter, nor does your ethnicity, your gender, or even if you have had a disease such as HIV.
Today, Ben reached another milestone. It has been over seven years since he received his heart, but just today he began riding his bicycle without training wheels. These little milestones are the most important to us parents, because it means that our children are being kids. And now we look forward to the next milestone.
Joseph Hillenburg is a transplant dad, aviation geek, and Information Technology (IT) professional at Wi-Tronix, LLC. After his son’s transplant, Hillenburg searched for other ways to help pediatric patients. Initially, he joined UNOS’ Patient Affairs Committee, but his status as a technology professional led him to their IT Advisory Committee. Most recently he was named to their Board of Directors and their Pediatric Committee.
He lends his technology expertise to help advance UNOS’ mission. United Network for Organ Sharing, or UNOS, is the private, non-profit organization that manages the nation’s organ transplant system, OPTN (Organ Procurement Transplant Network). Learn more at unos.org and optn.transplant.hrsa.gov
Follow Joseph on Twitter and keep up with his son, Ben (lovingly referred to as “Mr. Recycled Parts”), @cobaltjacket