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 part of the West Central Ohio Comprehensive Sickle Cell Center, which is one of six regional sickle cell projects funded in whole by a grant from the Ohio Department of Health. The sickle cell center coordinates the Ohio Newborn Screening Program for hemoglobin disorders, which identifies infants born at birth with sickle cell disease, sickle cell trait and other hemoglobinopathies. The sickle cell center is administratively located inside the hematology department at Dayton Children’s Hospital. The center covers a 17-county service area which includes Allen, Auglaize, Champaign, Clark, Darke, Greene, Hancock, Hardin, Logan, Mercer, Miami, Montgomery, Paulding, Preble, Putnam, Shelby and Van Wert counties.
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 not currently a universal cure. However, experts are currently exploring the use of gene therapy for sickle cell patients, and 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.
On your first visit to the sickle cell center, our team will discuss the plan of care for your child, genetic counselling, sickle cell education and support for parents. We will perform another test within the first few months to confirm the initial test results. For ongoing care, we encourage families to return to the clinic every two to three months for monitoring. During routine visits to the clinic, children see our pediatric hematologist and nurse coordinator. Our team arranges 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.
Management of sickle cell disease includes taking daily medications, drinking lots of water, getting adequate rest and eating a healthy diet. When complications occur, we consider additional treatments such as pain medications and blood transfusions. 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. 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 presentations 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, which 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. We also help transition sickle cell patients to college by establishing a relationship with a provider in their new city, working with college admistration on living accomodations and medication storage and navigating the IEP process.