Sickle Cell Disease

Atrium Health Levine Children’s provides some of the region's best care for children with sickle cell disease. Our pediatric hematologists offer treatment and support that puts kids and teens on track for long, healthy lives. We’re also using research to make this care even better, by pioneering new treatments that could improve sickle cell care for patients nationwide.

About sickle cell disease

Sickle cell disease is an inherited condition where hemoglobin (a protein in red blood cells) doesn’t work properly. Usually, red blood cells are round. But defective hemoglobin changes them into a sickle shape. It’s hard for these misshapen cells to move through the body, and they often clump together. This can lead to serious complications like pain and anemia (low iron).

Sickle cell disease – what to expect from Levine Children’s

Here’s why families from across the region come to Levine Children’s for sickle cell care:

• We’ve seen many types of sickle cell disease, in many different kids.This gives us the experience to understand how sickle cell affects different patients, and it helps us know which treatments will work best for your child.
• We offer customized care. Our team evaluates each child to understand their condition and unique needs. Then we create a treatment plan that’s right for them and is designed to help with every aspect of sickle cell disease.
• We offer leading-edge treatments and stem cell transplants to help patients manage pain and other side effects. This includes our state-of-the-art blood and marrow transplant unit, where we’re expanding options for patients with advanced sickle cell disease and exploring new ways to make stem cell transplants available for more people.
• We offer lifelong care from infancy through adulthood. Our team is improving long-term sickle cell care by smoothly transitioning patients into our adult program at Levine Cancer Institute when they reach their early 20s. This means they can see familiar doctors and keep up with treatment when they become adults.
• We offer comprehensive support services. Whether children need help transitioning back into school after time away or are feeling down about their disease, our support team is here to help. Our patients have access to child life specialists, nurse navigators, pediatric psychologists and other experts who help kids and their families through every aspect of treatment.

Treatments for sickle cell disease

Our comprehensive approach to sickle cell treatment includes:

Managing sickle cell and preventing complications

We minimize the risk of sickle cell complications by:

• Reducing infection risk with treatments based on the latest standards of care.
• Making sure all vaccines are up to date. Vaccines are especially important because conditions like meningitis, pneumonia and the flu can be more severe for children with sickle cell than for other children.
• Predicting and preventing stroke. We use high-tech ultrasounds to know which sickle cell patients have an especially high risk of strokes. Then we take steps to prevent them.
• Using research to elevate care. We’re continually finding ways to avoid complications, shorten hospital stays and make treatment as easy on your child as possible.

Blood transfusions

Blood transfusions deliver healthy cells and help kids manage sickle cell. Our approaches include:

• Simple transfusions, where doctors infuse healthy blood cells into children’s veins to improve blood flow.
• Exchange transfusions, where we give children healthy blood cells and remove sickle cells at the same time. This can keep sickle cells to a minimum. It also brings down the risk of stroke.

Stem cell transplants

Stem cell transplants can help patients with sickle cell when other treatments don’t work. Patients typically need to find a perfect donor “match” to get the cells they need for a transplant. But only about 20 percent of patients can find this match.

Our team is studying a new type of stem cell transplant that uses cells from donors who aren’t a perfect match. This could make transplants available to more children who need them.

Pain management

Pain from sickle cell can get in the way of things like going to school and playing with friends. We offer treatments that keep this pain to a minimum. These include therapies that help oxygen flow through the body:

• Hydroxyurea, which has been the most effective sickle cell pain treatment for decades.
• Endari, a new medication that reduces pain and lowers risk of acute chest syndrome.

Supportive resources

We offer treatment and support for all aspects of sickle cell, with resources like:

• Genetic counseling, to help families understand sickle cell and their odds of passing it to their children.
• Support groups that help parents and children cope with sickle cell.

Patient stories

Read our four-part blog series to see how Levine Children’s partners with Levine Cancer Institute to improve sickle cell treatment and help kids live well with sickle cell:

• Part 1: Game-Changing Advancements in Care
• Part 2: Improving Long-Term Care for Sickle Cell Disease
• Part 3: Innovative – and Proven – Therapies
• Part 4: An Integrated Pharmacy Model