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Renee Williams was introduced to Children’s Hospital of Pittsburgh of UPMC when she was only 14 months old. Today, Renee is a young adult who is aspiring to become an actress who wants families of transplant patients to know that she is a healthy, active young woman who just happened to have a liver transplant.
Renee was 10 months old in January 1985 when she was diagnosed with alpha 1 antitrypsin deficiency, an inherited condition caused by a defective gene that can produce liver problems in babies. Transplantation appears to be the only cure for the small percentage of children who develop this liver disease. A liver became available four months after her diagnosis. Renee was discharged from Children’s three months after her transplant, in August 1985.
When Renee isn’t attending college classes, she volunteers at Children’s transplant unit where she serves as a role model for young transplant patients. Lively and enthusiastic, Renee believes she is destined to support transplant patients. In the transplant unit, Renee spends a lot of time answering questions and even showing off her scar. “The kids want to see my scar, and I show it because they see that it’s not ugly,” she says proudly.
Parents ask about the effects of immunosuppressive drugs used to prevent organ rejection (she has been weaned off the drugs over the years); whether she can play sports (yes); and whether she feels differently from the other kids (no).
It has been the overriding goal of Children’s transplant team for children to recover and return to a normal quality of life since Children’s created one of the nation’s first pediatric transplant centers in 1981. By 1985, when Renee’s liver transplant took place, Children’s Hospital of Pittsburgh had established itself as a transplant center with among the highest patient survival rates in the world.
Significantly, advances in organ preservation, surgical techniques, immunosuppression and postoperative care have directed Children’s higher survival rates and better quality of life among transplant recipients. From the start, Children’s has offered a wide range of services to help children and their families cope, including instruction on caring for children at home, access to social workers, psychologists, physical and occupational therapists and others who can help with all the challenges they face.
“There’s been a shift from the early days, when you just hoped the patient survived,” says George Mazariegos, MD, director of Pediatric Transplantation. “Now we focus on improving quality of life.”
Pittsburgh’s doctors pioneered the development of Prograf®, an antibody therapy approved in 2001 that eliminates the routine use of steroids following the transplant procedure. “Steroids are potentially toxic in kids and have many side effects,” says Dr. Mazariegos. “We want all our transplant patients to be off these drugs.”
In 2004, the hospital was the first in the world to establish a liver transplant protocol for patients with maple syrup urine disease (MSUD), a very rare condition in which amino acids from proteins accumulate in the body, possibly leading to brain swelling, neurological damage and death. The typical treatment for the condition: eliminating protein and dairy from the diet.
Read about other children who have had successful liver transplants at Children's Hospital of Pittsburgh of UPMC.
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