Kaylee Lindley, gurgling under a pale yellow blanket, has good fortune and medical derring-do to thank for making her one of the world’s youngest liver transplant survivors.
For reasons that still baffle medical experts, she was born in November without the cells needed to make her liver function, including clotting blood and removing toxins.
Lacking options and time, Kaylee’s father, Jim, agreed to donate a piece of his liver, and with his wife, Kellie, gave specialists at the University of Iowa Hospitals permission to perform a risky and complex transplant on their daughter.
Months later, the operation has been deemed a success and has made the Port Byron, Ill., toddler — just 19 days old at the time — among the youngest ever to survive the transplant procedure, hospital and donor organizations say.
“We knew there were big risks,” Kellie said Tuesday, holding her 6-month-old daughter after a visit to doctors here. “Every time she smiles at me, every time she coos at me, I know it was worth it.”
Third-youngest liver patient
Annie Moore, a spokeswoman with the United Network for Organ Sharing, said Kaylee’s liver transplant was one of 158 provided last year for children under a year old.
According to statistics provided by the network, Kaylee is the third-youngest surviving liver transplant patient with an organ donated by a relative. Other successful liver transplants involving donor-relatives were done on infants in 1999 and 2000.
There are still hurdles to clear. Kaylee’s parents and doctors are closely monitoring her health, the growth of the liver and her body’s acceptance of it. She has started the lifelong routine of taking anti-rejection drugs.
They also are watching the healing of the incision, which is covered only by a thin, mesh-like material designed to aid skin growth.
“She is still working through some surgical-related complications,” said Dr. Warren Bishop, a specialist in pediatric gastroenterology. “But we expect her to have a normal childhood and that she will grow up to be a normal adult.”
Carried to full term but small at just 4 pounds, 15 ounces, Kaylee had immediate complications. Jaundice and abnormal blood chemistry problems later emerged.
Yet nothing prepared doctors for Kaylee’s liver problems in the days ahead.
“The exact cause of this was never determined and remains a mystery to this date,” Bishop said. “I’ve never seen anything like it. It’s not even described in medical literature. And there was literally no chance of survival without a transplant.”
Liver is regenerating
Kaylee’s birth complications stirred old frustrations and anger, Jim and Kellie said. Their daughter was the result of five years of dreaming, planning and fertility treatments.
Four pregnancies had failed. Kellie, 40, then underwent three cycles of in vitro fertilization, all of which failed. Then, last year, the couple tried again, this time using a donor egg.
“I remember thinking it was not at all fair, that I had paid my dues,” Kellie said. “I thought there would be a celebration at the end of all of this — roses and good feelings.”
“Instead, it was almost every day that we felt like we could lose our daughter,” said Jim, a pediatrician.
The transplant, including removing the liver section from Jim, lasted 15 hours. He recovered fully after the operation and doctors say his liver is regenerating on schedule.
Kaylee has had to overcome other health challenges unrelated to the transplant. Twice doctors have operated on her eyes and recently, she visited the hospital to correct a problem in her small intestine, and is now getting nourishment from intravenous tubes.