Family on mission to find 10-year-old girl new kidneyTweet
Pediatric dialysis unit needed at MUSCBy Ashley Barker
For 10 hours a day, every day, a vibrant 10-year-old Charleston girl is connected to a peritoneal dialysis machine that pulls the toxins and excess fluids from her blood, something her kidneys can no longer perform on their own.
The process, sometimes painful, occurs while Mary Ashley Barbot sleeps in the comfort of her own bed, but it’s not without flaws.
Her parents, Chip and Charlene, get up three to five times each night when the tubing gets tangled, making the alarm on the machine would go off loudly, and Mary Ashley needs to be repositioned. Sometimes the machine stops working completely, which has happened twice so far, and Charlene has been forced to perform manual dialysis on her daughter.
It’s a much better life than what the family had to do before to keep their daughter alive, which involved driving to Dialysis Clinic Incorporated on King Street three times a week for Mary Ashley’s hemodialysis. With just a few hemodialysis machines configured for pediatric patients, her dialysis sometimes didn’t get started until 6 p.m. or later and took three to four hours to finish.
|Mary Ashley Barbot was born at MUSC with congenital nephrotic syndrome. By the age of 2, her kidneys had failed. After surviving one kidney transplant, she now needs another one. She’s spent much of her young life in the hospital, but still finds ways to keep smiling.|
Mary Ashley is one of 15 pediatric MUSC patients who are currently undergoing dialysis treatments while waiting for a kidney transplant. When a kidney becomes available, it must match Mary Ashley’s tissue type and not conflict with her unique antibody profile, she will undergo her second transplant surgery.
When Mary Ashley was born at MUSC in 2003, she weighed 6 ½ pounds. She was swollen and was diagnosed with congenital nephrotic syndrome, which meant she was losing protein in her urine. A year later, she only weighed 9 pounds.
By the age of 2, her kidneys had failed, and she had her first transplant. Other than some mild developmental delays, hearing impairment and daily medications so her body would accept the new organ, she lived a relatively normal life for eight years.
Then her second kidney began failing – forcing her name to be put back on the kidney transplant list.
“I would love more than anything in this world for me or my husband to be able to give her a kidney and make this all better,” Charlene said. “As a parent, you always want to provide everything for your child. It doesn’t feel good to not be able to be the ones to provide this.”
None of the more than 20 people who have already been tested have been a match for Mary Ashley.
“I’ve been completely amazed by the people who have come out to be tested, just completely unselfishly. We’ve had family, friends, people who we don’t even know that are willing to give up a kidney for her, and they just don’t match,” she said.
Katherine E. Twombley, M.D., medical director of the MUSC Pediatric Kidney Transplant Program and a board-certified pediatric nephrologist, has been on Mary Ashley’s team of doctors since July 2012. She said Mary Ashley’s PRA, or panel reactive antibody, is 99 percent.
“If you have above an 80 percent PRA, you’re considered a high-reactor, meaning it’s very difficult for you to match to other donors,” she said. “With Mary Ashley, she has her donor antibodies in addition to other antibodies that she’s developed from blood transfusions. Every time, she’ll need a kidney, it will get harder to find a match. But she needs a transplant now or her life would be significantly shortened.”
On average, Twombley said, a kidney’s lifespan is 10 to 12 years. With newer immunosuppressant medications and newer treatments, they can last longer, but she’ll likely need several more kidney transplants throughout her lifetime.
The donation process
Her doctors are now focusing on finding a kidney that will match.
In order to give Mary Ashley a kidney, a donor must have the same blood type, O negative or positive. If that’s a match, the donor will have an HLA antigen test, which is a simple blood draw. If Mary Ashley’s blood doesn’t have antibodies to any of the donor’s antigens and her blood doesn’t have a positive reaction when mixed with the donor’s blood, then it’s a match. But that’s not the end.
The donor would then have to pass a medical work- up that includes a check of blood pressure, cholesterol and other routine health screenings.
“If the donor is considered healthy and able to donate the kidney and they’re a good match, we’d set up a surgery date,” Twombley said. “For the donor, it’s usually two or three days in the hospital after surgery, mostly for pain control, and the donor would be out of work for a while.”
According to Charlene, all of the tests and the surgery are covered by the Barbots’ health insurance.
|Charlene allows her 10-year-old daughter, Mary Ashley, to pick out a purse as long as she behaves during appointments with her doctors.|
Charlene is even trying to find a partner who doesn’t match Mary Ashley but is willing to donate a kidney anyway to someone else so they can team up to join a national exchange registry. She’s also on the list for a cadaveric kidney, which is when someone who dies has agreed to donate organs. But both options could mean a long wait on dialysis.
“I have to believe that people just don’t realize the need. I think making the decision to be an organ donor is hard for families,” Charlene said. “If more people realized how many lives they could save just by being an organ donor at the end of life, I can’t imagine more wouldn’t sign up to do that.”
A diva in the making
Until the moment arrives when a healthy kidney donor matches Mary Ashley, she will continue to do dialysis treatments and be the little “diva” that her many friends adore.
“Mary Ashley is fabulous. She has the brightest smile I think I’ve ever seen. She has this full-bodied, contagious laughter that you just can’t help but giggle about when she’s laughing,” said Charlene. “She likes her purses and her jewelry. She wants to have her nails painted purple, her favorite color.”
Her reward for behaving during appointments with her doctors is a trip to Goodwill, where her parents let her pick out a purse. Her collection, which at times has been close to 100, includes every color, shape and size imaginable. The purses – some adorned with clocks, fur and mermaids – hang from several hook racks in her purple room. She gives them away as presents to ladies and young girls who visit her and rotates them multiple times a day, according to her mother.
“She makes us smile constantly,” Charlene said. “She’s very appreciative of everything and everyone. You can come home with her favorite yogurt drink, and she’ll be just as excited as anybody you’ve ever seen.”
When she visits Twombley, she shows off her purple fingernails and showers her doctor with hugs.
“She’s the most outgoing kid. To have been through everything that child has been through in her life and still have a positive attitude is amazing,” Twombley said.
Helping the ‘forgotten children’
The Barbot family has met many other children along their journey of waiting for a kidney and has found that South Carolina is not the ideal place for children who need dialysis.
“Although the fabulous staffs at DCI on King Street and MUSC have gone above and beyond to make these visits special for Mary Ashley and the other children, having a center specialized for the pediatric population and the pediatric nephrologists close at hand would certainly be more ideal,” Charlene said.
She has been working with another member of Mary Ashley’s team of doctors, Ibrahim F. Shatat, M.D., medical director of the MUSC Dialysis Unit and division chief of Pediatric Nephrology and Hypertension, to raise awareness and funding for a pediatric dialysis unit.
“In many other states and many other children’s hospitals, there are dedicated pediatric dialysis units. Unfortunately, in the state of South Carolina we don’t have those clinics, so pediatric patients end up going to adult clinics,” Shatat said. “Where our children go now, we try to make it as pediatric-friendly as possible. We have all the kids come at the same time, do their dialysis after school time, and even have the nurses help them with their homework. Despite all of this, it is far from the ideal unit dedicated for pediatric dialysis patients.”
Those children, some of whom live as far away as two hours from Charleston, have only two options if they aren’t able to do peritoneal dialysis at home: be admitted to a hospital for dialysis or drive back and forth, three-times-a-week, to one of the few South Carolina adult dialysis clinics that allow children.
“Not many people know children who have end-stage renal disease and kidney failure, and require dialysis. Everyone knows about the child that has no hair because he is receiving chemotherapy due to cancer,” Shatat said. “No one knows about the 15 children that we’re taking care of who are on dialysis and have to go three-times-a-week to be on a machine for three hours. Those are the forgotten children unfortunately.”
There have been some discussions at MUSC to start a pediatric dialysis unit, but such a unit would require the help and support of the public through fundraisers and charity donations.
Wiener dogs race for Mary Ashley
Joseph P. Riley, Jr. Park, home of the Charleston RiverDogs, hosted a wiener-dog race on Aug. 31 to benefit the Mary Ashley Barbot Transplant Fund and to bring awareness to the need of a pediatric dialysis unit.
More than 70 dachshunds participated in the race along with 30 small dogs who took a chance at winning the costume contest.
“Around $10,000 was raised during the event,” Charlene said,” and we’ll probably end up donating about $1,500 to MUSC to go toward a pediatric dialysis clinic.”
The remaining funds will be used to help Mary Ashley’s donor, who will likely have expenses related to being out of work for an extended period of time after surgery, Charlene said. Prior to the race, Twombley and the Barbot family spoke to the crowd about the need for people to donate organs and donate money for MUSC to build a pediatric dialysis clinic.
“I can promise we’ll do everything in our power to take the very best care of this kidney and treasure it and celebrate that donor. I can’t imagine finding any way adequate enough to say thank you,” Charlene said. “Mary Ashley has taught us that it definitely takes a village to raise a child. The people that we’ve met because of her – I think they’ve been brought into our lives because of God – have been amazing. I think it’s blessings that we would have never had otherwise. I’m very grateful to Mary Ashley for all of that.”
To read more about Mary Ashley, visit maryashley.org/. The MUSC Children’s Hospital Fund can accept donations for the proposed pediatric dialysis clinic. Visit musckids.org/giving/childrenshospitalfund/index.htm or contact Barbara Rivers at firstname.lastname@example.org or 792-6643 for details.September 26, 2013