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Christine Plotts gave life to her daughter, Carleigh, not once, but twice.
The first time was in 2000, a delivery, not unlike any other birth. The second was a little more than a year later, when baby Carleigh was suffering a downward spiral due to a failing liver. A living-organ donation from Christine – part of her own liver – gave the infant the shot at life she so desperately needed.
Like other children with biliary atresia, Carleigh was born seemingly normal and healthy. However, this rare and incurable condition affecting newborns starts to show its effects soon after birth. The cause is unknown. It is neither hereditary nor caused by anything that occurs during pregnancy. It strikes one out of every 10,000 to 15,000 births and is the leading reason for liver transplants in children.
Although a degree of jaundice is common in newborns, it typically clears after several weeks. With biliary atresia, however, the delicate, hair-thin ducts from the liver to the small intestine become inflamed and are progressively damaged, eventually withering or completely disappearing. Liver function is disrupted. Instead of being carried away, bile is trapped inside, leading to cirrhosis. Because Carleigh was still jaundiced at nearly 2 months of age, her pediatrician referred her to Children’s Hospital of Pittsburgh of UPMC, where the diagnosis was confirmed.
As a first step in her treatment, surgery was required, when Carleigh was only 77 days old. Children’s doctors conducted a>Kasai procedure, in which a small segment of her intestine was connected directly to the liver at the spot where bile normally drains. The Kasai technique generally restores the function of bile drainage for a period of time, often sustaining into adulthood. But statistically, 80 percent of Kasai recipients eventually need a liver transplant, says Children’s Transplant Coordinator Lynn Seward, RN, CCTC.
In Carleigh’s case, that need came all too soon.
Five months after the Kasai procedure was administered, it was apparent that Carleigh was not thriving. She was losing weight. Her liver was becoming harder. She was given multiple medications to combat the consequences of her failing liver, and management of her condition was becoming more intense.
Nearly two months before her first birthday, Carleigh was evaluated by Children’s transplant team and placed on the waiting list. Four long months passed. The need for liver transplants far outweighs the availability of livers from deceased organ donors. Finding a match for an infant is a particularly difficult challenge, and time is of the essence. But a relatively recent procedure, called living donation, has been changing lives for some, and Children’s Hospital of Pittsburgh of UPMC has been at the forefront of living-donor liver transplantation.
The nation’s first and, today, the most active pediatric liver transplant center, Children’s Hospital of Pittsburgh of UPMC performed more than 1,300 pediatric liver transplants from 1997 through 2005.
A living donation is made possible because the liver is the only organ in the body that can partially regenerate itself, given the right circumstances. When it became apparent that finding a liver through traditional means would be a problem, parents Christine and Steven, who both had the same blood type as Carleigh, were more than ready to make a living donation.
“Living-related donations are not always a first option, because they involve risks for the donor. And when the parent is the donor, you’re talking about the child’s caretaker,” explained Ms. Seward. “But, the living donation has given small babies, who have a very small window of time, another option to live.”
For Christine, the decision was easy. “Carleigh’s odds of recovery and rejection were so much better because it came from her mother,” said Christine, adding that the family remains involved in a Children’s follow-up study of success rates relating to blood-typing of transplant donors and recipients.
In the fall of 2001, at nearby UPMC Presbyterian, a small segment of Christine’s liver was removed and taken to Children’s for transplantation into 14-month-old Carleigh. The surgical team was lead by Children’s Director of Pediatric Transplantation George V. Mazariegos, MD and included Rakesh Sindhi, MD and Emad Asham, MD.
While Christine was recovering, Steve brought her photographs of Carleigh taken by the nurses in Children’s Pediatric Intensive Care Unit (PICU). “The first thing Steve told me was ‘You’re not going to believe it – her eyes are white.’ Before the operation, she had yellow skin and yellow eyes. And it was just the first day. On the third day, she was smiling in the PICU.”
Today Carleigh is counted among a growing list of 30-plus living-donor liver transplant recipients from Children’s. She is a bright, outgoing, self-assured child, who at the age of 5 could count to 1,000, add and subtract numbers up to 10 and placed in the top reading group in her kindergarten class, according to her mother.
Like any child who has had a major organ transplant, Carleigh’s condition requires monthly monitoring, and a regimen of medications. But the living donor liver transplant has allowed her to achieve a more normal life than would have ever been possible earlier. The Plotts family recently chose home schooling through a cyber charter school to limit exposure to others with childhood viruses. As Carleigh prepared for her first-grade year, she had her own laptop computer and was enrolled with PA Learners Online.
For Christine, it’s not about being overprotective; she’s just practicing good defense for the daughter she gave life to … twice.
Read about other children who have had successful liver transplants at Children's Hospital of Pittsburgh of UPMC.
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