Pediatric Transplant: Giving Kids the Gift of Life
Every 10 minutes, someone is added to the national transplant waiting list. Unfortunately, there are more people waiting for an organ than what’s available, and on average 20 people die each day waiting for their second chance at life.
Of those waiting, nearly 2,000 are children.
Brian Navarro Dr. Bradley Warady
Many of the children on the waiting list are on dialysis and in need of a kidney.
“In the case of children, dialysis should be seen as the bridge to transplant; it's not the end-all therapy,” said Dr. Bradley Warady, Director, Division of Pediatric Nephrology at Children’s Mercy. “These kids are hooked up to a machine anywhere from three to seven days a week to sustain their lives until a new kidney becomes available.”
19-year-old Brian Navarro Raytown, Mo., knows firsthand what it’s like to be tethered to a dialysis machine. He received a kidney transplant last April, a year after he was diagnosed with end-stage renal disease (ESRD) and was coming to the hospital three days a week for dialysis.
“My quality of life is so much better after my transplant. I have more energy, I don't feel sick and I can focus more at school now,” Brian said.
Not only was his transplant life-saving, it was life-changing for the entire family.
“It impacted my parents’ lives too, because I depended on them for transportation and some of my care.”
More than half the children on the kidney transplant waiting list and on dialysis will receive a kidney within one year after starting dialysis, and 40 percent of all pediatric kidney transplant recipients will receive a kidney from an adult living donor.
“Whenever possible, we prefer to give a child an adult organ, which gives the children the best possible chance for prolonged function of the kidney,” said Dr. Warady. “In addition, the life expectancy of the transplanted patient far exceeds that of the patient on prolonged dialysis.”
Dr. James Daniel and Kailyn McMillin (then and now) Gail McMillin (Kailyn's mom), Vicki Fioravanti
Kailyn McMillin recently celebrated the 14th anniversary of her liver transplant at Children’s Mercy, and reunited with her physician, Dr. James “Jack” Daniel, Medical Director of Liver Transportation and Vicki Fioravanti, RN, Transplant Coordinator.
Kailyn was 18 years old when she received her transplant and waited more than a year before a compatible donor was found. She’s now 32.
“I feel fortunate every day that I can get up and go to work full-time, and be a relatively normal person. I was grateful when I was younger, but I think as I get older I’m even more thankful, because I realize how things could have gone another way.”
Vicki said seeing Kailyn as a thriving adult was “incredible.”
“We see kids who, 30 years ago, would have died because there was nothing we could do to help them,” said Vicki, who has been a transplant coordinator for most of her 42-year nursing career, 19 of them at Children’s Mercy. “Today, through the generosity of an organ donor, they get a transplant, go home, grow, play, and do the things a kid is supposed to do. We get wedding invitations and baby announcements from kids we’ve transplanted who grow up and have children. It makes all the nights we’re up all night worth it. It’s the big payoff in this job.”
Dr. Daniel said Kailyn is a good example of what organ donation can do.
“Our goal in working with kids is to make sure they grow up to be adults and have a good life, and that’s what we’re seeing with Kailyn," Dr. Daniel said. "Sometimes people need organ transplants later in life just to keep alive, but Kailyn’s transplantation gave her a future.”
Maggie Mae Gorrell Maggie's Family Stacy Reynolds
Children’s Mercy has performed 14 heart transplants since February 2015, and waiting for transplant day can be the hardest part for patients and families.
Right now, there are six patients on the heart transplant list, which includes 15-month-old Maggie Mae Gorrell. She’s been on the list since Oct. 10, 2017. Maggie’s mom says a new heart will mean she gets to have a life outside of the hospital.
“She won’t be attached to the machine that is keeping her alive, instead she’ll be with her sister, and maybe fly in her dad’s plane,” said Kristen Gorrell, Maggie’s mother. “The miracle of transplant means a real life, not a sick life.”
Stacy Reynolds, Heart Transplant APN, says people don’t realize how many children are waiting for organs and they often think of heart failure as an adult issue. She understands organ donation isn’t an easy decision for families to make, but it truly makes a difference.
“I want them to understand that, in the most horrible situation they could face, they have an opportunity to positively impact the life of another child,” Reynolds said.
Kristen added if Maggie doesn’t get her heart, they’ll donate her other organs to help someone else. “If you have to go through tragedy, why not have a glimmer of hope?”
Consider Organ Donation
Dr. Daniel encourages people to consider organ donation.
“There are thousands of people in the United States who need new organs, but can’t get them and it’s a shame. We need to think about how we can help our fellow human beings.”
You can become a living donor, or you can check the box on your driver’s license to donate your organs if something were to happen to you. Make sure to have a conversation with your family, so they know your desire to donate. One donor can save eight lives.
Also speak with your spouse about what you would do if anything were to happen to your child. Would you want your child to be an organ donor? It’s a difficult conversation, but one that’s easier to have in advance of a crisis and when a loved one is critically ill.
“For children who need a kidney, liver or heart transplant, these organs are truly a gift of life,” Dr. Warady said.
Click here to watch Dr. Daniel and Kailyn McMillin's reunion.