Sharing the gift of life
By Loretta Coureas
At age 12, Kristin Subervielle thought she had seen it all when Hurricane Katrina hit her New Orleans home in 2005. It was enough to send her and her family packing, taking what they could salvage and moving to Gloucester, Virginia, the childhood home of Kristin’s mother, Lori.
The Subervielles brought with them an enthusiastic spirit and their love for the New Orleans Saints football team as they settled in the small community of Hayes.
Three years later though, 15-year-old Kristin suffered a blow more devastating than a hurricane: end-stage renal disease from an inherited illness that the family never even knew she had.
Kristin’s family first noticed she had little energy during a family trip to Busch Gardens in 2008. In the days that followed, she became weaker. When she could barely walk across a room, her parents took her to the nearest emergency room, a half hour drive from their home.
The diagnosis was quick and unexpected. Both of Kristin’s kidneys had shut down. She was in kidney failure, a life-threatening situation. “We were frantic,” Lori said, remembering that night. “We couldn’t believe what was happening to Kristin.”
Aside from hearing the life-changing diagnosis, the moment that stands out for the family that night was when the emergency staff asked if they wanted to transfer Kristin by ambulance to CHKD in Norfolk or to a pediatric facility in Richmond.
“I didn’t hesitate a minute,” Lori remembers. “I knew I wanted the best for our girl, so naturally we chose CHKD in Norfolk.” Having grown up in Hampton Roads, Lori was already familiar with CHKD’s good reputation.
She remembers meeting nephrology specialist Dr. Irene Restaino soon after arriving at Children’s Hospital. “She really helped us understand what was going on and how she was going to help Kristin,” Lori said. “I knew right away we were in the right place.”
The news wasn’t easy to take. Dr. Restaino told the Subervielles that Kristin had otorenal syndrome, a hereditary condition that also involves hearing loss, a symptom Kristin also suffers. Kristin’s kidneys were irreversibly damaged. She would need a kidney transplant to survive and daily hemodialysis treatments until a donor was located.
Paul Subervielle immediately volunteered to be his daughter’s donor.
“I didn’t even care if anyone else was a match,” he says. “I wanted to do it for her because she’s my girl.”
Kristin was in no hurry for the transplant surgery. She wanted to wait until the end of the school year if at all possible.
Waiting, however, meant she would need daily dialysis treatments to filter waste products and excess fluids from her blood, a process normally handled by her kidneys and essential to life.
Dr. Restaino explained the two options for dialysis treatment: Kristin could travel to CHKD daily for several hours of dialysis; or she could learn how to do the process of peritoneal dialysis at home. In peritoneal dialysis, a special tube (catheter) is inserted into the abdomen through an opening created just for dialysis. A dialysis fluid goes through the tube into the abdominal cavity and stays for a set amount of time, then is drained out into a collection bag and discarded. The process is repeated several times for a total of 10 to 12 hours each day.
The teen decided she wanted to have her treatments at home so she could stay in school.
CHKD peritoneal dialysis nurse Ruth Prentice visited the Subervielle home to assess whether they could accommodate the equipment for the daily process of peritoneal dialysis, including the machine used to pump the sterile dialysis fluid into her body and a large supply of the fluid. Then Kristin and her mom traveled to CHKD for two weeks to learn the home procedure. “It was very complicated at first,” Lori recalls, “but Ruth was very patient and we knew we could do it because it was what Kristin wanted. She could sleep while the treatment was being done, and she could still go to school.”
“We’re fortunate to be able to offer the more convenient way of home peritoneal dialysis for those patients who can manage the treatment,” Dr. Restaino said. “It is a lot of work for the family and carries a great deal of responsibility.”
For the next several months, Paul and Kristin tailored their diets and daily activities in order to ensure they would both be ready for the transplant surgeries in July 2009. Lori even learned to give Kristin shots to restore her red blood cells in the weeks before her surgery.
Dr. Restaino was impressed with the determination of the father and daughter. “They both had to lose some weight in order to be in optimal health,” she said. “You could tell they were very committed to it. It’s not easy to keep the routine of this type of therapy.”
After several months of at-home dialysis and graduation from the eighth grade, Kristin checked in to CHKD for surgery and Paul checked in to Sentara Norfolk General Hospital next door. Vascular surgeon John Colonna performed the transplant on Kristin at CHKD, giving her the healthy kidney harvested from her dad in the Sentara OR by urology surgeon Edwin Robey. Both surgeries were successful, and within hours Kristin was in the pink with her dad’s kidney functioning normally within her body.
CHKD’s renal specialists
work with the vascular surgeons on six to 10 pediatric kidney transplants a year. They continue to follow some 100 patients who have already received healthy kidneys at CHKD. Post-surgery therapy consists of typical recuperation from surgery, plus a regimen of anti-rejection, anti-viral and blood pressure medications. Every six to eight weeks, transplanted patients like Kristin pay follow-up visits to Dr. Restaino and her partner, Dr. Reem Raafat.
According to Dr. Restaino, Kristin should thrive with her father’s kidney. The process of kidney dialysis need not be repeated as long as the transplanted kidney continues to be healthy.
Lori looks back gratefully on the extremely positive experience. “We did whatever we had to do because she’s our girl and we love seeing her healthy and strong now,” she said. “It was all worth every bit of effort,” she added. “Kristin has really blossomed since her daddy gave her that kidney.”
Last fall, when the family gathered around the TV for a football game with their favorite New Orleans Saints, the father and daughter were sharing much more than the excitement of their winning team. They were also sharing the gift of life.
Dr. Restaino practices with Children’s Specialty Group PLLC at CHKD.
This story was featured in the first quarter 2010 issue of KidStuff, a publication of Children's Hospital of The King's Daughters.