Nicole Smith was met with raised eyebrows when she carried daughter Alex, then 1 year old, into the emergency room of the local hospital and explained that fevers can be life-threatening for children with sickle cell disease (SCD).
Alex Smith, 2, travels from Skagit County to get the special care she needs from Dr. M.A. Bender at Odessa Brown Children’s Clinic.
“Alex is probably the only child in Skagit County with sickle cell disease, and most doctors here haven’t encountered it since medical school,” Smith explains. “So I handed the doctor the one phone number I keep with me at all times and told him to call Dr. Bender at Children’s.”
For many families in Washington state, Dr. M.A. Bender and the sickle cell team at Odessa Brown Children’s Clinic are a lifeline in rough seas. Most primary care and emergency room doctors have little experience managing SCD, and aren’t sure what to do.
An inherited disease in which irregular, “sickle-shaped” red blood cells are very stiff and can clog blood vessels, SCD deprives the body’s cells and tissues of blood and oxygen. It mainly affects black and Hispanic children, and can cause intense pain, anemia, recurrent bacterial infections and clots in the lung, brain and spleen.
Children with SCD may also face learning and health challenges at school, and a lack of knowledge about their condition in the community.
During the last 25 years, the team at Odessa Brown has developed partnerships with community providers to address the special needs of children with SCD.
The key factor in maintaining good health is education. Healthcare providers must learn to recognize and treat the disease. Families must learn to manage the illness and help their children cope on a day-to-day basis.
“I once called Odessa Brown in tears,” recalls Flossie Cunningham, whose children both have SCD.
“The teacher and principal wanted my daughter to repeat first grade because she missed so many days. I had explained that she would miss class because of her condition, but the school didn’t get it. The Sickle Cell Clinic’s nurse and social worker cleared their calendars and drove to Lynnwood for a meeting at the school. They explained Dominique’s condition and how the school could help her in the future. She excelled in school the next year because she got the attention she needed.”
Improving the Model of Care
Last year, Children’s was one of 18 organizations in the United States to receive a grant from the federal Department of Health and Human Services (DHHS) to improve care for children with SCD and those who carry sickle cell trait.
During the last 25 years, the team at Odessa Brown has worked to develop stronger partnerships with community providers and improve access to care that addresses the special needs of children with SCD.
Odessa Brown is leading the effort in Washington to educate healthcare providers in the community and to improve access to specialty care so that all children with SCD can get the special care they need.
We are working with Mary Bridge Children’s Hospital in Tacoma, the Washington State Department of Health Newborn Screening Program, Sacred Heart Children’s Hospital in Spokane, the Metropolitan Seattle Sickle Cell Task Force and Group Health Cooperative in Seattle toward this goal.
“The Odessa Brown Sickle Cell Clinic is like that light when the tunnel narrows and gets dark. They keep me positive and psychologically up. I couldn’t fathom our lives without them,” says Cunningham.