SAN ANTONIO — A local couple was forced to make life and death decisions for their baby. Their son was born with a genetic condition that can kill children within the first week of life. Their baby not only survived, but is facing a brighter future.
Since the day he was born, CJ Everett has faced a number of health complications. He was born prematurely and diagnosed with autosomal recessive polycystic kidney disease (ARPKD). It’s a rare genetic disorder that affects 1 in 20,000 children, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Dr. Mazen Arar, division chief of pediatric nephrology at UT Health San Antonio, and CJ’s kidney doctor, said about 1 in 3 newborns with ARPKD die within the first week of life.
CJ’s parents do not have the disease and didn’t know they carried the mutation. ARPKD causes multiple complications in the body including the kidneys and liver. His mother who’s an adult kidney physician at UT Health San Antonio recalled how the condition impacted her son’s kidneys.
“When he was born, it was about 8 centimeters and normal kids his size are 3-5 centimeters at the most,” explained Dr. Ashley Garcia-Everett. “They just kept growing and the cysts made his whole kidney grow because they were everywhere. It felt like every time we would take an ultrasound, his kidney would grow by another centimeter.”
The enlarged kidneys affected CJ’s breathing and put stress on his heart. He was put on a ventilator and started dialysis. CJ also faced infections and high blood pressure. One day, his heart even stopped twice and was revived with CPR. The Everett family and doctors eventually, made the decision to remove both of his kidneys.
“When his kidney’s came out, they were 15-17 centimeters. An adult’s kidney is typically 10-12 centimeters,” recalled his mother.
She said the best option for his survival was a kidney transplant. After six months in the hospital, CJ was cleared to go home and await a kidney transplant. Then, the COVID-19 pandemic hit. Everett’s father, Dr. Christopher Everett, was treating coronavirus patients in the ICU at a local hospital at the time.
“Normally, you’re not scared of your patients. But every time I would go, I would think, is this person going to get me sick and am I going to get CJ sick? Mom sick?” he recalled.
But CJ did not get an infection and his health continued to improve at home. He was able to receive his mother’s kidney.
“I’m only 5’2” and he’s small and he needed a smaller kidney. That could fit in there,” said Ashley with a laugh. “Usually the parents are the best candidates for that because he shares half of all our genetic material.”
“That’s what the most amazing thing is, is that mom gave him life for a second time,” said Christopher.
The family says there are risks of infection or rejection. He will need another transplant in his lifetime. But for now, he continues to thrive and get stronger.
“If he’s happy and doing well, that’s what matters. All these other metrics that parents measure themselves by or worry about are just so unimportant,” said Ashley.
UT Health San Antonio says last year, CJ was recognized by the PKD Foundation for being one of the country's largest individual fundraisers for the Walk for PKD. His family created an online page in his name and they raised $8,127, which exceeded the goal of $7,000. There is a new fundraiser for this year's walk.