Sickle Cell Disease Program

The Division of Pediatric Hematology/Oncology at St. Louis Children's Hospital actively cares for over 350 infants, children, and adolescents with sickle cell disease and sees approximately three patients per month with a new diagnosis of sickle cell disease. 

The Sickle Cell Program Team at St. Louis Children's Hospital includes: pediatric hematologists, a pediatric neurologist, a nurse practitioner, nurses, a social worker, and a data manager. Together this group provides the medical care for the majority of children with sickle cell disease in the St. Louis metropolitan area.

In addition, all newborns in the St. Louis Metropolitan area identified through the mandated state newborn hemoglobinopathy screening are referred to this program. Many of these children are seen in the Division of Hematology for confirmation of diagnoses, genetic counseling and establishment of parent, nurse, physician relationship.

Program highlights

• The division functions as a regional referral center for children with sickle cell disease. 
• It has been recognized for the outstanding level of care by the state of Missouri and has been awarded a grant to provide direct medical care and genetic counseling to children and families with sickle cell disease. 
• The division closely follows patients with complications associated with sickle cell disease (such as patients with strokes, multiple painful episodes, and multiple acute chest syndrome episodes). 
• Patients are not followed for routine pediatric care by the division. Instead, this activity is performed by the patient's primary care physician. This approach to patient management provides the optimal balance between medical care and clinical research for children with sickle cell disease.