The standard of care for pediatric patients with end-stage renal disease (ESRD) is kidney transplant, but transplant is not immediately available for all children. Meanwhile, many patients require dialysis—either hemodialysis or peritoneal dialysis. Many choose peritoneal dialysis, where fluid is infused through a catheter into the abdomen to remove toxins from blood vessels lining the abdomen. Typically performed at home at night while the child sleeps, the procedure allows fewer limitations on school and social activities than hemodialysis, where the child receives treatments three to four times a week in a dialysis unit. But not all children can be treated with peritoneal dialysis, and significant training is required to perform this complex procedure at home and to avoid infection.
“It’s a lot of work for patients and families, who independently set up the dialysis machine every night and disconnect it every morning,” says Alicia Neu, director of the Division of Pediatric Nephrology at Johns Hopkins. “Also, they are making therapeutic decisions about what fluid to use. It’s very labor intensive for the families.”
Peritoneal dialysis, Neu adds, may not be able to remove toxins adequately in children who have had prior abdominal surgeries, or infections. In these patients, hemodialysis is required. However, in recent times in the state of Maryland there has been no outpatient hemodialysis unit dedicated to pediatric patients with ESRD, which means children had to either receive this treatment at a facility that also treats adults, or travel out of state three to four times a week. On Oct. 1, the Johns Hopkins Children’s Center relieved patients and families of that burden—and also improved continuity of care for these patients—by opening the only outpatient hemodialysis unit in the state dedicated to children.
“It means patients and families now have the best dialysis modality for them in their own backyard instead of having to go out of state,” says Neu. “Also, they get to stay with the multidisciplinary health care team here that has cared for them, often from the time when they were infants, who will now follow them through dialysis and transplant.”
The unit also offers patients access to the latest technologies, including specialized equipment that will help distinguish between the healthy weight gain expected in childhood and the unhealthy weight gain due to fluid retention from poorly functioning kidneys. Children cared for in the unit also benefit from participation in a structured transition program to optimize the patient care experience and outcomes during all phases of cognitive development, and to aid in the development of autonomy among teenage and young adult patients.
The pediatric hemodialysis unit at The Johns Hopkins Hospital, which provides both hemodialysis and peritoneal dialysis in a family-friendly environment, is staffed by a multi-disciplinary team with training in the care of children with ESRD, including pediatric nephrologists, pediatric dialysis nurses, a pediatric renal social worker, a pediatric renal dietician, a full-time child life specialist and a behavioral psychologist.