As a parent, hearing your child has sickle cell disease can be overwhelming. But with early diagnosis, progressive treatment, and regular follow-up care, Nemours' board-certified pediatric hematologists — doctors who treat blood disorders — can help your child manage sickle cell anemia symptoms and live an active and productive life.
Sickle cell disease or sickle cell anemia is a genetically inherited blood disorder, detected through a blood test. The disease is passed down from both parents who carry an altered hemoglobin gene, which causes their red blood cells to take on an abnormal (sickle) shape rather than the normal, smooth disc shape.
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- medical and pharmacy insurance cards
- preferred pharmacy name and phone number
- names and dosage of all medications, including over-the-counter medication, your child is currently taking
- guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
Bring these forms for your first appointment:
Returning Patient Forms
- Patient Presents without Legal Guardian (PDF)
Note: A parent or legal guardian must be with a child for a first visit.
Resources for Patients & Families
Support Service for Overnight Stays
- Ronald McDonald House of Delaware: a safe, free, family-centered home away from home when your child is sick and needs to be hospitalized
Learning your child has sickle cell disease can be frightening — but at Nemours/Alfred I. duPont Hospital for Children, Wilmington, our board-certified pediatric hematologists — doctors who treat blood disorders in children — can help calm your fears. Our specialists will care for your child using the latest advancements in treating sickle cell anemia symptoms.
Nemours Center for Cancer and Blood Disorders at Nemours (NCCBD)
Children and teens throughout Delaware, Pennsylvania, and Southern New Jersey, diagnosed with all types of cancers or blood disorders — including sickle cell disease — are cared for by our experienced specialists at the Nemours Center for Cancer and Blood Disorders (NCCBD) — a center dedicated to providing expert and compassionate care to children with all types of blood disorders and cancers. In addition, the NCCBD gives our pediatric hematology experts the opportunity to collaborate on research efforts throughout all Nemours locations.
Sickle cell disease is a genetically inherited blood disorder that occurs when a child inherits an altered hemoglobin gene from both parents which causes their red blood cells to take on an abnormal (sickle) shape rather than the normal, smooth disc shape. These abnormally shaped cells clog small blood vessels in your child’s body, impairing blood flow and resulting in pain and organ damage.
Delaware, like most states, requires newborn screening — a simple blood test — for sickle cell disease. If your child’s screening test suggests a diagnosis of sickle cell, our pediatric hematology specialists in our Sickle Cell Program, will begin the process of caring for your child.
At Nemours, our experts will:
- confirm the results of your newborn’s screening with an additional hemoglobin electrophoresis blood test
- provide extensive education and information about managing sickle cell anemia symptoms and caring for your child
- initiate important preventive strategies with can protect your child from serious complications
At Nemours, our goal is to help your family and your child learn to successfully adapt to living with a chronic condition like sickle cell disease.
Our sickle cell disease team includes:
- board-certified pediatric hematologists
- board-certified pulmonologists (lung doctors)
- hematology advance practice nurses
- pediatric hematology nurses
- pediatric psychologists
- licensed clinical social workers
- registered dietitians
- Child Life specialists
Members of our Sickle Cell Program offer a daylong comprehensive outpatient clinic each week for children with sickle cell disease and their families. As advances in medical treatment for sickle cell anemia symptoms improve, so does the lifespan and quality of life for your child.
Early diagnosis and progressive sickle cell anemia treatment — along with regular and long-term follow up care — is important to help your child live an active and healthy life.
In addition to initial hematology/newborn screening follow-up services, our sickle cell disease team provides:
- Sickle cell disease preventive care: well-child hematology visits, and sickle cell disease education for you and your child
- Hydroxyurea therapy
- Routine diagnostic testing such as TCD: a yearly noninvasive ultrasound used to measure blood flow in children beginning at age 2 through 14 with sickle cell disease to assess the risk of stroke
- Treatment of sickle cell anemia symptoms & related complications
- Outpatient Hematology Clinic: provides well and sick visits and a weekly clinic for children and families
- Outpatient Hematology Day Therapy Infusion Room: offers a wide-range of blood transfusion services, and pain management services
- Emergency Department services: 24-hour coverage including phone access to one of our pediatric hematologists
- Inpatient Hematology/Oncology Unit: a specialized inpatient unit staffed by a team of specialists experienced in caring for children with sickle cell disease
- Behavioral health care: provides outpatient and inpatient consultation services, psychotherapy services, and neuropsychological evaluations
- Social work services
- Access to other Nemours specialists
- Combined orthopedic/hematology outpatient clinic
- Combined pulmonary/hematology outpatient clinic
- Transition to adult hematology care program
- Sickle Cell Disease School Outreach program
- Bone Marrow Transplantation program