Comprehensive Sickle Cell Disease Program

The Comprehensive Sickle Cell Program at Children's National: Why Choose Us?

From dedicated pain clinics for older children to specialized infant sickle cell care, Children’s National delivers care and support to provide a sense of well-being and normalcy to children and their families.

Highlights of our program include:

• Advanced pain management. Knowing that your child will experience pain is difficult for any parent. From textured rooms, to medications and breathing techniques, we offer advanced pain management and coping techniques. Our goal is to arm your child with tools and options to help him or her get relief and gain a sense of control when pain strikes. Learn more about our Pain Medicine Care Complex.
• Seamless care. Whenever a child with sickle cell disease visits our Emergency Medicine and Trauma Services department, a member of our specialized team is available any time of the day or night to help guide his or her care. 
• Safety. Children’s National was one of the first programs pairing sickle cell patients with repeat blood donors who offer the closest possible genetic match. Also known as the Transfusion Buddy Program, this practice reduces your child’s risk for complications.
• Comprehensive array of services. We believe the best care for sickle cell disease includes specialized services to meet your child’s every need. We even offer a hospital-based dentistry program where dentists experienced in treating sickle cell patients take extra steps to minimize pain and bleeding.  
• Family-centered care. We understand the challenges that families face when their child has sickle cell disease. Our team includes psychologists and social workers who specialize in helping families cope with chronic disease. Learn more about resources for families.

Sickle Cell Disease in Children

Sickle cell disease is an inherited blood disorder that impacts the red blood cells that carry oxygen to the tissues of the body. It is caused by a change in the genes for hemoglobin, which carries oxygen inside the red blood cells. This change causes the cells to take on a sickle or crescent shape. The sickle-shaped cells tend to clog small blood vessels and block blood flow to the tissues and organs. This can cause many complications associated with sickle cell disease, such as anemia, pain crisis, acute chest syndrome, and stroke.

With innovative treatments at Children’s National, patients diagnosed with sickle cell disease can still live a healthy and active life. The team at Children’s works with patients and families to understand and treat their disease from its earliest stages. 

Sickle Cell Disease Care for Babies, Children and Adolescents

Our comprehensive approach includes delivering age-appropriate care:

• Newborn to 2 years. Our Infant Sickle Cell Program includes a team of experts who specialize in caring for young children with sickle cell disease. We also help families cope and prepare for their child’s future health needs.
• 2 years to 14 years. We deliver ongoing care to meet your child’s day-to-day needs while protecting him or her from complications. You can relax knowing you have direct access to our dedicated advanced practice nurses any time you need help.
• 14 years to 18 years. We offer information and support to help your child transition to an adult sickle cell expert (hematologist). The Sickle Cell Adolescent Transition (SCAT) Program is a specialized program we offer in collaboration with Howard University to prepare teens to manage their own care.

Innovative Sickle Cell Treatments at Children's National

As a premier sickle cell treatment program, Children’s National offers the best available treatments.

Your child’s care may include:

• Blood transfusions. A blood transfusion gives your child a fresh supply of blood from a healthy donor. At Children’s National, a physician who is board certified in both hematology and transfusion medicine guides your child’s care. This ensures the highest levels of safety and quality.
• Bone marrow transplant. A bone marrow transplant is a non-surgical procedure to replace damaged blood-forming cells with healthy, immature donor cells (stem cells). Learn more about our Blood and Marrow Transplant program.
• Gene therapy for sickle cell disease. Two types of gene therapy treatment were recently approved by the Food and Drug Administration to treat – and potentially cure – sickle cell disease. The treatments are a new type of blood and marrow transplant that use a patient’s own stem cells (no donor is needed). Children’s National offers both FDA-approved treatments for sickle cell disease (for ages 12 and older): CASGEVY™ and LYFGENIA™.
• Hydroxyurea. Hydroxyurea is a medication for preventing or reducing the frequency and severity of pain crises. Children’s National participated in multiple research studies exploring the safety and effectiveness of this treatment. Learn more about hydroxyurea for sickle cell disease. (Español)
• Therapeutic apheresis. Apheresis uses a special machine to separate your child’s blood and remove harmful substances. Lowering the level of sickle cell proteins (hemoglobin) can prevent your child from having a stroke.
• Surgery to treat complications. Despite the best care, many children with sickle cell disease experience complications and need surgery to correct them. We work closely with our surgical teams to ensure the safety and comfort of all our patients. Learn more about general and thoracic surgery.
• Clinical trials. Our experts play an active role in multi-center national trials exploring the next generation of sickle cell disease treatments. These efforts give your child access to novel treatments that are not yet widely available. Read about Bryce, a sickle cell patient that was cured due to a groundbreaking clinical trial at Children's National. Also, learn more about our research and clinical trials.