10/24/2022
My pregnancy was completely normal until my 38th week when my doctor found I had no amniotic fluid. They sent me straight to the hospital, and doctors could tell there was something wrong with the baby’s kidneys. Our son, William, was born the next day and was immediately whisked off to the NICU. Within a few hours, the nephrologist and the NICU physician came to my room and said, “We think your baby has a condition called ARPKD.”
We’d never heard of ARPKD, so they had to explain it to us. They said that they would do everything they could for William, and it was up to him how much fight he had in him. We brought him home after about a month, but his kidneys were so enlarged, that he struggled to eat and even breathe. So doctors took out one of his kidneys when he was 4 months old. Unfortunately, he came down with an infection four months after that, so his remaining kidney had to be removed as well.
We spent Christmas learning how to perform daily peritoneal dialysis. We all went through testing, and my husband, Matthew, was a nearly perfect match. After several screenings an imaging test showed that Matthew had extra arteries leading to his kidneys and William’s little body would be unable to handle them. We were heartbroken. William was put on the transplant list, and he received a kidney one week after his second birthday.
The kidney transplant made a huge difference for all of us. No more dialysis and he finally had an appetite. Doctors have assured us that if William needs another kidney when he’s older, Matt can be his donor. Today, William is an energetic 12-year old boy who’s into cars and trucks and roughhousing. He’s also an avid reader. William has to take a half-dozen pills every day, but that doesn’t stop him from hamming it up or singing at the top of his lungs when a song he loves comes on the radio.
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Thank you, Carolyn , for sharing your ARPKD story and joining the fight to . https://connect.pkdcure.org/voices-of-pkd/