Sickle Cell Disease

Atrium Health Levine Children’s is committed to delivering cutting-edge, specialized care for children and teens with sickle cell disease that meets their unique needs and supports long, healthy lives. We offer the region’s only comprehensive sickle cell program, with curative options once thought impossible—such as cellular therapies, transplants and gene editing— and seamless transition to adult care through Atrium Health Levine Cancer.

Led by nationally recognized specialists, the pediatric cancer and blood disorders program at Levine Children’s provides advanced care for complex cases. We are home to one of the few pediatric cellular therapy programs in the Southeast. Our expert teams work closely with patients and families to deliver personalized care and achieve the best possible outcomes, particularly for those with rare or hard-to-treat conditions. Through stem cell transplants and advanced therapies, we help manage pain and reduce the complications associated with sickle cell disease.

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 integrative medicine services, including dietary support, massage, acupuncture and novel approaches to help our patients manage chronic pain and other side effects.
• We offer leading-edge treatments and stem cell transplants. 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 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. However, patients typically need to find a perfect donor match to get the cells they need for a transplant, and only about 20 percent of patients can find such a match.

Our state-of-the-art blood and marrow transplant center is at the forefront of expanding options for patients with advanced sickle cell disease. We are continually exploring new methods to make stem cell transplants more accessible and effective—broadening the possibilities for more patients to receive life-changing care.

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.

Cellular Therapies

Atrium Health Levine Children’s Hospital is home to one of the few dedicated pediatric cellular therapy units in the Southeast. Our multidisciplinary team works closely with families to achieve the best possible outcomes, especially for patients with rare or hard-to-treat conditions.

Cellular therapy is when human cells are transplanted or transferred into a person to treat or prevent a disease. Bone and marrow transplants (BMT) are a kind of cellular therapy. We’re exploring new ways to use BMT to treat sickle cell disease, helping to reshape what’s possible for children with this once-incurable condition.

Gene editing is another kind of cellular therapy. Atrium Health Levine Children’s Hospital offers access to innovative gene-editing clinical trials for patients with sickle cell disease and certain nonmalignant blood disorders. As one of the few transplant centers in the U.S. offering these, we are at the forefront of finding potential cures.

Our gene editing clinical trials use CRISPR (a gene-editing tool) technology. These trials use the patient’s own stem cells, which are collected through apheresis procedures (blood is withdrawn and separated into plasma and cells) at Levine Children’s Hospital, edited and then returned to the patient during the transplant procedure in our hospital.

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.