Children With Sickle Cell Disease More Likely To Suffer Stroke
On June 1, 2006, she complained of stomach pain. On June 2, Ashton, diagnosed at birth with the blood disorder sickle cell disease, was admitted to the hospital. On June 6, she was transferred to another facility and given blood transfusions. The next day she seemed to be improving and even had enough energy to draw – one of her favorite activities. On June 8, she complained of pain and feeling hot throughout the day. That evening she suffered a stroke, and on June 14 she died of complications from it.
“I didn’t know what was happening or why,” said her mother, Stephanie Taylor of Walterboro, South Carolina. “I did not foresee a stroke happening to my daughter.”
The Taylor’s youngest daughter, Peyton, 4, also has sickle cell disease. Her parents are concerned she may also have a stroke, and they are proactive advocates for her medical care.
The most common underlying risk factors for childhood stroke are sickle cell disease and congenital or acquired heart disease, according to a new American Heart Association/American Stroke statement — “Management of Stroke in Children” — published recently in Stroke: Journal of the American Heart Association.
Children with sickle cell disease have a more than 200 times greater risk of suffering a stroke than children without sickle cell disease, according to the Baltimore-Washington Cooperative Young Stroke Study cited in the association’s first scientific statement on managing stroke in infants and children. In the United States, sickle cell disease is most commonly found in African Americans. The disease occurs in about one in every 600 African-American births, and can lead to pain, anemia, serious infections and damage to major organs.
“Stroke in children, while still uncommon, is not as rare as we used to think,” said E. Steve Roach, M.D., chair of the American Heart Association statement writing group and professor of pediatric neurology at The Ohio State University College of Medicine in Columbus, Ohio.
“Improvements in diagnostic techniques have made it possible to confirm that a stroke has occurred when it was only suspected before, and research has helped us better define treatment protocols,” Roach said.
Joy McKee, of Canal Winchester, Ohio, was told that her daughter, Mayah, had sickle cell disease shortly after she was born. She was also told her daughter had a 40 percent chance of suffering a stroke at age 5 because of the disease.
“At the time, I didn’t think it would happen to my child,” McKee said.
On May 6, 2005, shortly after being picked up from school, Mayah complained that she did not feel well. McKee noticed a slight droop on the right side of her daughter’s face. Within two hours, Mayah was taken to the emergency room and diagnosed with stroke.
“I am a single parent. I didn’t know what I was going to do,” McKee said. “I never had anyone in my family have a stroke. It was very alarming to me.”
Doctors told McKee that Mayah could have long-term deficits, including diminished motor and comprehension skills. Mayah remained in the hospital for two weeks. She had difficulty swallowing, chewing and grasping with her right hand. McKee worked with Mayah on regaining grasping skills through crafts and repetition exercises. Today Mayah has made gains in recovery, does well in school and enjoys swimming. She has difficulty pushing the pedals on her bike and maintaining balance while bike riding, however.
Both families want other parents of children with sickle cell to be aware of their risk of stroke, to follow the recommended treatment, and to inquire about new treatments and trials.
“Parents need to educate themselves and know exactly what to do if a stroke happens,” McKee said. “The sooner they react, the sooner the child can get treatment to minimize the risk of permanent damage.”