Every April, the world celebrates organ donors and the lives they save. In the Johnson house, it’s April every month.
My son Billy was born with heterotaxy. Basically, his organs functioned as they should, but they were in the wrong place—that is, all organs except for his heart, which had four major, complex defects. He underwent his first open heart surgery at one day old. It’s hard to watch any newborn cry, but it’s especially difficult when you can’t hear it, only see it, because your child is on a ventilator.
At 26 days old, Billy’s doctors listed him on the heart transplant wait list. It was the football equivalent of a Hail Mary pass. Without a new heart, my son would not survive. Shortly after he joined the wait list, we met Billy’s heart transplant coordinator. She explained what would happen when—or if—a new heart was ready. We learned that the “We have an organ for you” calls usually come at night, when most car accidents happen. As a mother, that news was horrifying.
After our meeting, my husband headed back to work in North Carolina and I prepared to take up residence at the hospital. The average wait for an infant heart is two months. Two hours later, I got a call from the transplant coordinator. What had she forgotten to tell me? She hadn’t forgotten anything: They had a heart for my Billy. I fell to my knees and immediately prayed for his donor’s family.
Less than 51 hours after he was placed on the waiting list, a new, healthy heart was beating inside my son. Dr. Mahle called it the “Cadillac of hearts” because it functioned so beautifully. And because he received it so quickly, Billy thrived without developmental delays.
A year after transplant, we had the opportunity to write a letter to his donor’s family through UNOS. Imagine trying to write a thank you note to the people who saved your son’s life. We spent days finding words that could begin to relay how their selfless decision had filled our home with so much love.
Weeks after we sent our letter, we got a reply. Billy’s heart had come from a baby girl, the youngest of four, born with no brain activity. Not a day goes by that I don’t pray and give thanks to her and her family.
For years, we lived a relatively normal life. And then Billy got the BK virus, something a healthy person could have and not even know it. But for immunosuppressed Billy on antirejection drugs, the virus wreaked havoc on his kidneys. He needed a kidney. Thankfully, both my husband and I matched as donors. We needed my husband to work, and I was grateful to help. At only 4 years old, Billy endured dialysis for 12 hours a day for eight months and never complained. Not many mothers can say they gave life to their son twice, but on Dec. 14, 2012, I did just that. It became Billy’s third birthday. Billy is thrilled not to go on the “bachine” anymore!
Transplantation is not a cure. It is a bridge to life. We work hard to carefully manage Billy’s care, but I wake up grateful every day for the honor to do so. We cherish EVERY moment we have together—even that “colorful” moment when we say it’s time to turn off Angry Birds.