sickle cell disease
comprehensive care for kids with sickle cell disease
Dayton Children’s is the only facility in the area to provide comprehensive care for infants, children and teens with sickle cell disease, sickle cell trait, thalassemias and other hemoglobin variants. Our program is called the West Central Ohio Comprehensive Sickle Cell Center, one of six that is funded by the Ohio Department of Health to provide care for children with sickle cell disease and support for their families.
The center is staffed exclusively by Dayton Children’s personnel. Our team includes a pediatric hematologist/oncologist, sickle cell nurse coordinator, social worker, dietitian, genetics counselor, newborn screening coordinator and outreach coordinator. These caring individuals serve patients and families in a compassionate, culturally sensitive and coordinated way to ensure the best quality of life possible.
what is sickle cell disease?
Sickle cell disease is a group of serious, inherited disorders in which the body makes “sickle-shaped” red blood cells. These cells are shaped like a crescent instead of like normal red blood cells, which are round. Sickle cells are stiff and sticky, and they tend to block blood flow in the blood vessels, which can cause pain and organ damage, and increase a person’s risk of infection.
Sickle cell disease is inherited, and there is no universal cure. However, treatments are available to help with the symptoms and complications of the disease. With proper care and treatment, many people who have the disease can experience a good quality of life much of the time. For a small number of people, stem cell transplants may offer a cure.
Andray Simmons has a permanent smile on his face, you would never know that he lives every day fighting the pain that comes along with sickle cell disease. Andray uses his experience with sickle cell to teach others and encourage patients along their journey.
Ohio newborn screening program for sickle cell disease
All newborns in Ohio are tested for abnormal hemoglobinopathies. A positive result can mean that the child has a form of sickle cell disease or a hemoglobin-trait. If your child tests positive for sickle cell disease and you live in the Dayton Children’s service area, your pediatrician will refer you to us for an appointment.
treatment and care
On your first visit, our team will perform another test to confirm the initial test results, provide genetic testing, sickle cell education, counseling for parents and discuss care plan. For ongoing care, we encourage families to return to the clinic every two to three months for monitoring. Over time, these appointments are scheduled less frequently. During routine visits to the clinic, children see our pediatric hematologist and nurse coordinator. Our team makes arrangements for appointments with our social worker, psychologist or dietitians as needed.
Each year, we schedule a comprehensive appointment, which involves additional lab tests and imaging studies to help the team monitor the child’s condition.
The treatment for sickle cell disease may include pain management, medication, blood transfusions, rest, warm heat, hydration and a healthly diet. Parents are a very important part of our team. They can call during regular clinic hours for any reason. An actual person will answer—no “button pushing” required! If a concern arises after hours, parents can call the hospital operator and ask for the hematologist/oncologist on call.
Our clinic offers same-day and next-day appointments for urgent concerns.
When a child is diagnosed with sickle cell disease, the whole family is affected. We offer many programs to support and encourage families. These include special events including; retreats, parties and a holiday program. We let families know about community-based support groups, sickle cell awareness events and organizations that offer special experiences for kids with chronic health conditions.
We also can work with school nurses and provide educational classes for teachers and other school personnel.
Check out the family support resource directory.
transition to adulthood
Our team helps prepare patients for living independently and managing their own health challenges.
This means helping them be their own health advocate from an early age, teaching them how to care for their symptoms, referring patients to a local hematologist/oncologist who specializes in caring for adults with sickle cell disease as they reach adulthood and assisting with obtaining health insurance, if needed.