Family-Centered Care including Group Support for Patients with Sickle Cell Disease

University Hospitals Rainbow Babies & Children’s is deeply committed to delivering comprehensive care for children with sickle cell disease. In addition to having the expertise to diagnose and treat this condition, our specialized team offers a wide range of support services to help patients and families deal with the physical, emotional and social aspects of sickle cell disease.

We host group clinics to help our sickle cell families and patients connect with others who share a similar experience. Beginning at the child’s sixth month of age, parents can join one of our group-based baby clinics. During the clinic, we offer a complementary babysitting service to allow parents the opportunity to have a focused and open dialog with our sickle cell pediatric specialists. We provide educational lunches to cover topics ranging from sickle cell disease management to general pediatric safe practices. Through this comprehensive and coordinated community, our Sickle Cell Anemia Center team becomes like part of the patient’s extended family.

As children age, they have the opportunity to participate in our teen sickle cell disease support group clinics. We bring patients together based on their age and year in school, so they can connect with and relate to peers. Because sickle cell is an “invisible” disease, this helps our adolescent patients learn they are not alone in this journey. The educational lunch format provides teens a safe environment where they feel empowered to voice their questions and concerns about living with sickle cell disease.

Only Care Team in Ohio to Extend into the School System

We are the only health system in Ohio with a school teacher on staff who advocates for all our sickle cell patients within the school system. In addition to meeting regularly with northeast Ohio school districts, our School Intervention Specialist works directly with families to navigate and secure available resources. We also facilitate tests to assess important aspects of learning to ensure our patients receive the individualized education they need to reach their full potential.

Expert Nutritional Guidance to Support Optimal Health

Sickle cell diet and nutrition plays a vital role in the health and wellbeing of children with sickle cell disease. Our registered dietitians are integrated into the sickle cell care team to ensure each child follows a diet tailored to their needs.

Sickle cell disease can cause children to be underweight or smaller than their peers. Even when a child is feeling well, they may require more calories and protein to support their growth and help prevent vitamin and mineral deficiencies. Our expert nutritionists and dietitians work with each family to reduce risks of complications or pain crises caused by poor nutrition or dehydration.

Reliable Genetic Counseling and Testing

Sickle cell disease is the most common genetic disorder in the U.S. Our board-certified pediatric genetics counselors meet with every family during the first year of diagnosis. All our patients and families are offered testing and counseling for the sickle cell trait, or gene, and sickle cell disease. We also review family history and discuss the likelihood of having other children with sickle cell disease.

As your child reaches adolescence, they are also encouraged to meet with our genetics counselor. They will receive education and insights into their chances of having a child with sickle cell disease. This helps them enter adulthood prepared with the information they need about their own bodies – and helps them plan for the future they desire.

Participation in World-Class Research and Clinical Trials

To keep our patients at the forefront of sickle cell disease treatment, our board-certified pediatric specialists participate in ongoing national research projects. Thanks to the latest medical advances, we’ve been able to diminish complication rates and reduce the number of hospital admissions for patients with sickle cell disease. Active research projects and clinical trials include:

  • TCD with Transfusions Changing to Hydroxyurea (TWiTCH): The primary goal of this trial is to compare 24 months of alternative therapy, hydroxyurea, to standard therapy, transfusions.
  • Evaluating Genomic and Phenotypic Variations among Twins and Siblings with Sickle Cell Disease: The goal of this study is to learn about differences in clinical problems among brothers and/or sisters who have sickle cell disease.
  • Sickle Cell Renal Disease Cohort Study: The goal of this study is to learn more about kidney problems that can develop in children with sickle cell disease.

Comprehensive Online Library of Educational and Practical Resources

Our educational resources cover a variety of sickle cell disease topics, including information on medications, sickle cell-related symptoms and pain management. Explore the various topics below: