Will thrives thanks to sickle cell expertise
When Julie and Sarah adopted their son, Will, at 12-days-old, everything seemed fine. But several weeks later, blood tests revealed he had a particularly severe form of sickle cell disease. He was immediately placed on penicillin to help fight off any potential infections, which could have proven fatal. Shortly afterward, Sarah and Julie were referred to the Comprehensive Sickle Cell Program at Children's Memorial.
“We were shocked at first,” says Sarah. “We knew nothing about sickle cell disease.”
Sickle cell disease is an inherited blood disorder primarily affecting children of African/African-American heritage, and is the most prevalent genetic disease in the U.S. Children with the disease face many challenges, and are at risk for life-threatening infections, early strokes, serious pneumonias and debilitating pain crises. Long-term complications involve virtually every organ, and frequent hospitalizations and chronic pain often affect school performance, socialization and overall quality of life.
Under the direction of Horace E. Smith II, MD, the program treats about 350 children each year. Its multidisciplinary team includes hematologists, hematology nurse specialists, a nurse practitioner, a social worker and a genetic counselor. Sarah says she and Julie were impressed with the team's emphasis on parent education during a four-hour initial appointment, where they met Will's hematologist, Robert I. Liem, MD.
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“Right from the start it was clear that Dr. Liem has a passion for what he does,” says Sarah. “We immediately knew we were in good hands and that there was no need to go anywhere else.”
During Will's first year he was hospitalized a number of times for infections and fevers caused by such otherwise routine conditions as ear infections and strep throat. Because of his disease and the potential for complications from infection, Will required hospitalization for any fever of 101 degrees or more, with a typical regimen of IV fluids, antibiotics and a chest X-ray. Despite the needles and strangers poking and prodding him, Will's upbeat, cheerful spirit never faltered.