For 17 year-old Melika Roberts, back-to-school looks different than it does for most teens. This is her senior year in high school and ordinarily it would be spent at Bishop McDevitt where she completed the 9th grade, but her ongoing battle with kidney disease has complicated things.
Even the simple fall ritual of loading up a backpack and returning to the classroom has a different face.
The Chestnut Hill resident is among the 8,000 children and teens that, according to the US Renal Data System, have end stage kidney disease. While high blood pressure and diabetes are the major causes of kidney disease in adults, Dr. Susan Furth, Nephrology Division Chief at Children’s Hospital of Philadelphia explains that, “In children, structural problems of the kidney and bladder, that children are born with, are the most common causes.”
In Melika’s case she was born with only one kidney that barely functioned. From the ages of three through 10 she was monitored closely by doctors at CHOP, but at age 10 she officially went into renal failure. Melika spent three months on dialysis until her family got the call on Halloween night in 2004 that doctors had found a kidney for her just days before her 11th birthday. It was a cadaver kidney and it lasted seven years after transplant.
A dubious milestone
By February of this year, however, it became apparent that the cadaver kidney was failing. It was finally removed at the end of July in an operation that marked the 17-year-old’s 50th surgery.
“The 50th was supposed to be a transplant,” Melika says. She had high hopes for marking such a dubious milestone.
The start of the new school year finds Melika on dialysis three days a week for about three hours at a time. It’s an intense schedule that, coupled with frequent hospitalizations, can make it extremely difficult to attend class regularly. As a result, Melika is enrolled in cyber school at Connections Academy where she’s completed her sophomore and junior years.
A typical school day for Melika, when she’s not on dialysis, centers around the computer provided by the cyber school.
“So I got my school computer and what I do is go with my mom to her job. She works in an office and everything… so it’s kind of quiet… so I go there and I just click on my computer and there’s lessons to do everyday in each class,” Melika explains.
While cyber school can help Melika meet the academic requirements of a high school experience, it’s sadly lacking when it comes to meeting social requirements. Her cousin Malcolm Gill, also a senior at Bishop McDevitt this year, likes to playfully tease her about how she’d go to senior prom at cyber school. He imagines that she’d have to do it from her computer keyboard and “press P for prom” and “D for dance.”
Melika laughs at this joke along with the rest of her family. There’s no question that she and her cousin are good friends and that she’s done a remarkable job of being positive despite extraordinary health difficulties. But her high school experience is an especially challenging one. At a time when most teenagers are looking to gain independence she finds herself tethered to the dialysis unit at CHOP and going back-to-school in her mom’s office. It’s no doubt part of the reason why Melika made up her mind to go to Atlanta for vacation in the face of Hurricane Irene.
Braving a hurricane
“We were sitting there watching the news, my mom was like, ‘Don’t go, you can’t go,'” Melika explains. But she was determined to take a little trip since she’d spent most of her summer in the hospital. An uncle in Atlanta was hosting a dog show and barbecue and Melika’s father, Ken Roberts, owner of Chef Ken’s Chicken Café, was preparing food for the event. Melika made up her mind that she didn’t want to miss it.
“When she wants to do something, she’ll put her mind to it and nine times out of ten she’ll do it. She can convince me, her dad, her grandmother, aunts…,” Melika’s mother, Debra White-Roberts, says. Her daughter flew out just before the worst of the weather hit and made it safely to Atlanta, but getting back to Philadelphia the Monday after the storm was a bit more challenging. A number of flights had been canceled or delayed, so Melika and her father drove back. It was a 17-hour car ride with stops and Melika missed her regularly scheduled Monday dialysis appointment. As a result she went straight to CHOP at midnight Tuesday morning as soon as she and her father got back into town.
A declaration of independence
Needless to say Melika wasn’t thrilled to have to come in for dialysis after a long road trip, but she understands that her independence has its limits, especially where her health is concerned. The catheter in her chest that serves as a point of access for dialysis won’t let her forget. It’s a lot for a 17-year-old to deal with. It’s difficult to balance a growing need for independence with a desire for family support set against the life-threatening backdrop of renal failure.
“It’s a complicated time,” says Dr. Furth. “For some teens the desire for increased independence leads to conflict with parents or guardians who have been the people responsible for carrying out the medical regimens.”
A complex regimen of dietary restrictions, limited fluid consumption, medication and dialysis is the day-to-day reality for Melika and other teens in kidney failure. Dr. Furth studies teens like Melika and how closely they follow their medical regimens, the measure of which is called adherence. Furth is one of the Principal Investigators in the TAKE-it Trail, “a newly funded trial of a behavioral intervention to promote adherence to medical regimens in adolescents who have had kidney transplants.” While Dr. Furth’s study focuses on teens with kidney transplants, she sees applications for teens on dialysis as well.
“Teens are at particularly high risk of having problems in adhering to prescribed treatments,” Dr. Furth explains. When the desire for growing independence meets a complex regimen of care, adherence can sometimes suffer. “Teens really do not want to be seen as different from their peers, so finding ways to cope with having a special diet, or stopping to take medicines in a way that is conducive to their lifestyle may be more of an issue for teens [than for adults]. Many new interventions for teens are trying to take advantage of email and text reminders for taking medication which seem particularly effective for teens.”
In Melika’s case her family provides a supportive environment which helps her adhere to her medical routine even while she tests the limits of her independence, as any teen without her complex medical issues might. But she does feel the difference from the teens around her, and while it may not negatively impact her adherence, its influence is felt nonetheless.
“I think having kidney issues… stunts your growth,” Melika says. At age 17 she is about 4′ 9″ and dialysis keeps her at about 90 lbs. It’s true that poor growth is a major issue for children with kidney disease. “Some of this is because kidney failure gives a person poor appetite, and we often need to supplement calories,” says Dr. Furth. “Also, the increased acid in the blood that happens with kidney failure can adversely affect growth. So can the problems with low calcium and high phosphate affect bone growth.”
“People tell me I look like I’m 12 or 13 all the time,” Melika says, which is not usually what a 17 year-old wants to hear. In some ways her appearance doesn’t faze her at all. Her aunt, Gail Ramsey, notes that when she’s able to go to the beach “she walks around in the skimpiest bikini,” despite the scars from her many surgeries.
There isn’t a woe-is-me bone in Melika’s body, but the fact that she mentions her diminutive size at all hints strongly at the things that are on her mind when she’s not talking to a reporter surrounded by her family. There’s a brief silence that precedes her description of her scars that in itself is telling.
A map of difference
“I got my kidney transplant in 2004, and I have that big, old giant scar in the middle of my stomach from that,” Melika says, tracing a vertical line down the middle of her stomach. “Then when I got the kidney taken out they used the same scar… Then when I was two or something… when they took the intestine… I got another big, old giant scar across my stomach and it looks like a little map.” A map of her difference. The evidence of a childhood spent battling kidney disease.
These are not the typical body-image issues that plague most teen girls. Instead they stem from Melika’s complicated health problems. In order to live she has to guard her body and preserve its integrity in a way that wouldn’t even occur to most teens. Her decision to use a catheter for dialysis as opposed to a fistula, a surgically created linking of an artery to a vein usually in the forearm, supports this notion. Once created a fistula is permanent whereas a catheter can be removed. A fistula would remain in her body forever in the event of future dialysis.
Melika would rather not commit to a future with dialysis in it. She’d rather commit to tomorrow as another day full of the potential to get that call—the one that says doctors have found a kidney for her. Ideally, she’d have a transplant within the week and recover in time to attend Bishop McDevitt for the spring of her senior year.
“I really, really, really, really, really, really, really, really, really, really want to go back to school,” Melika says.
“Whoa, how many reallys were in there?” her Aunt Gail asks.
“About ten of them things,” Melika replies.
The right donor can help Melika get back to school. A simple blood test is the first step in finding a match. The right donor can make sure that Melika’s ‘really’s aren’t in vain and have her back at Bishop McDevitt in time for prom so that she won’t have to press D for dance.
The first step in finding a donor for Melika and other teens like her is a simple blood test to assess a person’s blood and tissue type. After that, if someone is a potential donor, they are evaluated to make sure that it is safe to donate a kidney, without putting their own health at risk.
Interested potential donors should contact the kidney transplant coordinators at the CHOP nephrology division at 215-590-2449, or the Kidney Transplant Program at 1-877-ORGAN50 or visit http://www.chop.edu/transplant