By Amy Adams
Our son Andrew was born with posterior urethral valves (PUV), meaning he was born with extra flaps of tissue in his urethra that blocked the normal flow of urine. In Andrew’s case the blockage lead to severe reflux of his bladder and kidney.
Andrew had surgeries to correct his PUV, but his kidneys were so badly damaged that we knew he would eventually need a kidney transplant. Our care team at Boston Children’s Hospital said there was no immediate rush for transplant surgery; they said it was best to wait until his body was ready, so he continued to receive care at Boston Children’s as they monitored his progress.
When Andrew turned nine, he started getting very sick. (He caught the flu, strep throat and pneumonia.) We consulted with the team at Boston Children’s who said it was time to think about getting Andrew a new kidney. We went to Boston and had labs drawn, met with a surgery consultant, attended a coping clinic and had a meeting with Infectious Disease Program.
At first we were hopeful Andrew could receive a kidney from a family member or close friend, but no one turned out to be a match so Andrew’s name was added to the national donor list. But before a transplant could be found, one of Andrew’s kidneys took a turn for the worse. It was decided that it needed to be removed and Andrew would be put on dialysis, which would take the place of his kidney, until a donor could be found.
Dialysis wasn’t easy for Andrew, but it was necessary as we waited for a donor kidney. He developed high blood pressure and got a lot of migraines. At one point he even had a seizure and needed to stay at the hospital over night. About two months after his first dialysis session we were at Boston to have his dialysis catheter replaced when our transplant coordinator came into the room and asked to speak with me in the hallway. Once in private she told me a kidney for Andrew had been found.
I was in shock at first, but quickly started making calls to Andrew’s father, grandmother and our friends. When I went back into the room and asked Andrew if he was ready for his new kidney, he looked at me like I had three heads. “Mom, I’m just getting a new catheter,” he said. “Not anymore,” I replied. “They found a kidney.”
His face broke into a big smile almost immediately.
The following afternoon Andrew went into surgery. We got updates every 90 minutes, but an hour and a half can feel like a lifetime when your child is in surgery. Six hours later Andrew had his new kidney. As he was being taken to the post-op room he looked up at the nurses and asked if he’d gotten his new kidney. When they told him he had, he started cheering like he was at a baseball game. A week later we were discharged from the hospital and on our way home.
Today Andrew is a happy and healthy ten-year-old. I will always be grateful to the doctors, surgeons, nurses and caseworkers that made up Andrew’s transplant team. I also am in debt to the donor family, who despite their grief, choose to give this wonderful gift to a family of strangers. Without their kindness I don’t know what would have become of Andrew.