Infant Sickle Cell Program

Each year, 80 newly diagnosed infants with sickle cell disease are seen in our comprehensive Infant Sickle Cell Program. Our Infant Sickle Cell Program team of physicians, nurse practitioners, social workers, genetic counselors and development specialists provides education about the diagnosis, supportive care, and treatment options to families

Infant Sickle Cell Disease Program: Your Visit

A visit to our Infant Sickle Cell Disease Program begins with consultation and education about sickle cell disease and common complications of the disease in young children. Discussion topics include:

Children’s National’s experts are constantly working toward better outcomes for sickle cell disease patients and families. Researchers participated in the Baby HUG study which examined risks and benefits of treating young children (9-18 months of age) with hydroxyurea, a medicine used to ease the complications of sickle cell disease. Follow-up Baby HUG studies are continuing to study these children to determine how hydroxyurea affects them. They are also working to understand more about the individual response to pain in order to create individualized pain plans for sickle cell patients and are studying bone marrow transplantation for children who don’t have a sibling match for transplant as well as ways to identify sickle cell infants who are the highest risks for complications later in life.

Paul W's Story

Paul Williams graduating

Almost 18 years ago, Audrey and Paul Sr. were living in Maryland awaiting their son’s arrival into the world. In preparation, they did all the research that expecting parents do, including looking for the best pediatrician and comparing car seats. In addition to this routine research, they also looked for the best sickle cell disease programs within the area. Since both of his parents had sickle cell trait, there was a one in four chance that their son would have sickle cell disease.

Read More of Paul W's Story