Family shares struggles and triumphs battling rare kidney disease
South Carolina State Senator Carlisle Kennedy’s son, Charles, turned two this August – beating the odds to outlive what doctors once described as a fatal diagnosis. Kennedy and his wife, Brooke, were in the early months of pregnancy and preparing for his first state election campaign when they learned that their unborn child had Autosomal Recessive Polycystic Kidney Disease (ARPKD).
“It is said that God will never give you more than you can handle, but no one thinks this phrase could ever become the center of their life,” Kennedy said. “My wife and I have always been faithful, but it wasn’t until recently that we learned how deep and fulfilling faith can be.”
A rare genetic condition that affects one out of every 20,000 children, ARPKD claims the lives of 30% of those who have it within their first week of life. This was what doctors expected for baby Charles; in fact, they predicted he wouldn’t live past birth – giving the couple a 10% chance of survival even after they had reached the third trimester. However, Charles beat the odds to live weeks and then months and has a good chance of making it to adulthood with the right care.
One-third of ARPKD cases are diagnosed by age one, with some symptoms detected during pregnancy as a result of routine prenatal care. Ultrasound imaging can identify the enlarged kidneys and liver scarring caused by the fluid-filled cysts that characterize the condition. Another one-third of cases are diagnosed by age 10, with the remaining third discovered after age 20.
Because the condition is present at conception, early diagnosis can improve prognosis by enabling continued monitoring and early intervention. The early onset of ARPKD causes its own problems, however, including poor kidney function, difficulty breathing and restricted lung development, limited growth overall, and lower levels of amniotic fluid. Kidney and breathing challenges persist for children who survive birth, with poor lung development serving as the most likely reason for death in the first days and weeks as infants work to breathe on their own.
High blood pressure often accompanies the condition, which can further damage kidneys while increasing the risk of heart disease and stroke. Severe liver disease is more of a long-term concern, but all infants with ARPKD are born with scarring and decreased liver function. Many children who survive pregnancy and the months following birth will experience kidney failure before they reach adulthood.
As expected, Charles was born prematurely with kidneys that did not function to support his tiny body. Against the odds, he survived those early days – with his parents struggling to determine the best path forward.
“The conversations we had before and right after birth were harrowing to say the least,” Kennedy said. “This was meant to be a time of joy and celebration; instead, we were talking about how far we would go or if we just wanted to hold him and give him comfort in his final moments.”
Surgeons removed Charles’ kidneys to allow his lungs to expand. Then they put him on peritoneal dialysis (which filters blood inside the body), but he was too small for it to work properly. The Kennedys watched helplessly as their son’s health continued to worsen, and he was placed on a ventilator.
When it seemed there was nothing more that could be done, renewed hope arrived in the form of a hemodialysis machine (which filters blood outside the body through an artificial kidney) that had become available a full month ahead of schedule. It had been donated just before they found out they were expecting by the Log a Load for Kids Foundation.
“Charles was named after my wife’s grandfather, who was a logger, and loggers provided the very machine that saved his life,” Kennedy said. “Where some might see a coincidence, we see the hand of God. We are deeply thankful for the machine and medical professionals that preserved Charles’ life and infinitely more grateful for Christ Jesus, who offers eternal life to us all.”
Charles spent his first seven months in Neonatal and Pediatric Intensive Care Units at MUSC in Charleston and a total of over 300 days in inpatient care. In recent months, the trio has been trekking to Atlanta’s Arthur M. Blank Hospital, which specializes in complex cases like his. Back home in Lexington, they perform peritoneal dialysis for 12 hours every night. They lean on their faith as well as unending support from both sets of grandparents in providing their son with 24-hour medical care.
“Our brave little warrior has endured more than most of us will in a lifetime. This has been a long and difficult journey, and even with such a devoted family, it would not have been possible without God’s constant blessings. We have seen firsthand the power of prayer, and watched God answer, over and over again.” Kennedy said.
For many children with ARPKD, the reality of needing a kidney transplant is not a matter of if but when. That’s certainly the case for Charles, who had to have both of his removed to survive his first days. As the Kennedys prepare for a transplant and pray for a living donor, they focus on their blessings thus far – as evidenced by Charles’ delayed but consistent growth and development as well as his ability to smile, laugh, and light up the room whenever he has the strength.
If you or someone you know is interested in becoming involved in the kidney donation process, contact the National Kidney Foundation’s South Carolina office at:
1643 B Savannah Hwy, Box 120
Charleston, SC 29407
(803) 799-3870