Going to the hospital three to five times a week and being hooked up to a machine for hours at a time is no life for a child. Yet that’s exactly what children with end-stage kidney disease waiting for a transplant spend their time doing. Which is why the team at Children’s of Alabama’s Renal Care Center works so hard to transition children and their families to home dialysis. Currently, of the 30 children they have on dialysis, 17 are able to get their treatments at home.
“In general, home therapy is best for children,” said pediatric nephrologist and Renal Care Center director Sahar Fathallah-Shaykh, MD. Since the dialysis is typically performed while the child sleeps, they miss less school and have more free time for friends and family. Plus, parents don’t miss work. Still, she said, “We understand that some parents don’t want to do it because it’s very stressful to be responsible for it.”
If parents do want to try home dialysis, the first step is a home visit from a social worker or dialysis nurse. They ensure there is enough space for the machines with the correct electrical outlets and an environment that doesn’t increase the risk of infection, which would require hospitalization.
Next, the family meets with a dialysis coordinator to learn what’s expected of them. “We make sure we tell them everything ahead of time,” Fathallah-Shaykh said. Finally, the medical team holds a home dialysis selection meeting, where they decide if home dialysis is the right choice for the patient. If it is, the next step is surgery to implant the catheter needed for home therapy.
Meanwhile, caregivers undergo extensive training. “It’s a very standardized process to ensure they understand not only how we do things, but why,” Fathallah-Shaykh said. Before the child goes on home dialysis, they spend a couple days in the hospital, where the parents perform dialysis under the watchful eye of the dialysis nurses. “We make sure they’re doing it right, and they have no hesitancy or issues with doing it at home,” she said. When both parents and the Children’s team are comfortable, patients are sent home. “We’re here for them all the time,” Fathallah-Shaykh added.
There are two types of home dialysis: peritoneal dialysis, which uses the lining of the abdomen to filter blood inside the body through a catheter, and hemodialysis, a more complex procedure that requires the caregiver to insert two needles into the child’s fistula or graft, so blood can flow from the body to a machine where it is filtered and then sent back into the body. Children’s is one of only three pediatric centers in the country that train families to do hemodialysis at home. To date, the Children’s Renal Care Center has placed three children on home hemodialysis.
Although hemodialysis has gotten easier in recent years with machines specifically developed for the home that are easier to set up, clean and disinfect, it’s still invasive. “And they have to deal with blood, which is a lot for some families,” Fathallah-Shayk said. “So we have to have motivated families to do that.”
Hemodialysis training typically lasts several weeks, while peritoneal training may take only a few days or a week. Regardless of which process is used, she said, “We take our time to make sure families are comfortable doing it.”