The Odessa Brown Children’s Clinic (OBCC) Sickle Cell Program provides care for children who have sickle cell disease.
We work with children, families and doctors throughout the region to coordinate children's care and make sure everyone has the information they need about sickle cell disease and sickle cell trait.
Our team is based at Odessa Brown Children's Clinic in Seattle's Central District. The team brings together healthcare providers from many fields so we can address all aspects of our patients' health.
We have team members from medicine, nursing, social work, genetic counseling, neuropsychology and community outreach.
When our patients need other types of care, we involve groups at OBCC and Children’s, such as the Pain Medicine Program. If our patients need to enter the hospital (as inpatients), we offer care at Children’s.
Our services include preventive care, treatment, education, genetic counseling and community support.
This is a major focus of care for children with sickle cell disease — taking steps to prevent infections, pain and other health problems before they start. Regular check-ups are an important part of keeping children with sickle cell healthy.
Treatment can help control health problems like infections and pain, as well as some of the other severe issues that sometimes arise from sickle cell, such as breathing and heart problems and strokes.
It's important to watch for signs of these problems and take steps early on to control them.
Children with sickle cell disease do best when they, their families and their schools know about their disease and how to take care of it.
We teach about things like warning signs to watch for, what do to when problems arise, how to cope with pain and how to avoid hospital stays.
Parents who have one child with sickle cell disease are at risk for having other children with the disease. Also, the parents' siblings (or the parents' parents) may carry sickle cell trait, which means they don't have the disease but they can pass the risk to their children.
We work with family members to test them for sickle cell trait if they want and help them understand their risk.
We hold monthly events for patients, families, people with sickle cell trait and others who are interested in sickle cell. These are social gatherings as well as times to learn more about the disease and get support.
We also have special community outreach events from time to time to increase awareness about sickle cell.
What's special about the Sickle Cell Program at Children’s?
Our sickle cell team works with and follows patients with sickle cell disease throughout Washington, Alaska, Montana and Idaho.
Our services extend even to patients who never visit our clinic in person. We want to help families with sickle cell get whatever they need, wherever they are.
We provide care to children with sickle cell disease at Odessa Brown Children’s Clinic, whether they get their primary health care from a doctor at Odessa Brown or elsewhere. We also consult with their families and doctors, and help coordinate their care.
Across the state
We sometimes see children at Odessa Brown who live in other parts of the state and who get most of their care from doctors and hospitals near their homes. These children may visit us only once in a while. We can still consult with their families and doctors and help coordinate their care.
Throughout the region
We work with children, families and doctors from other places in the region to assess children's needs and care. Children do not have to travel to Seattle for this service.
Instead, we work with their families and doctors to collect information about their case. Then we assess all aspects of their health and their care and the effects on their life at home and school.
Our assessment includes factors such as:
- How their bodies are working
- Whether they are getting the exams and tests they need
- Whether they are getting the treatment they need for fevers and pain
- Whether they are getting care they need for problems with their breathing, heart or nervous system
- Whether their families know what to watch for — signs that things are getting worse or that the child needs other treatment — and what to do
- Whether their schools and doctors at home have the information they need about the disease
- Whether their families are connected to a hospital near home where doctors know about sickle cell disease
Also, each summer we hold free camps for children with sickle cell disease on Vashon Island in Puget Sound.
Children’s Sickle Cell Program works closely with the adult sickle cell clinic at the Seattle Cancer Care Alliance to help our young patients keep getting the care that they need as they become adults.
Northwest Sickle Cell Collaborative
In 2005, we started the Northwest Sickle Cell Collaborative. Dr. Michael A. Bender directs the group.
It joins the resources of OBCC, Seattle Children’s, Group Health Cooperative, Mary Bridge Children's Hospital and Sacred Heart Children's Hospital (Spokane) to improve and streamline screening, care and education for sickle cell statewide.
This group provides services to families who are touched by sickle cell disease or trait; doctors, clinics and other hospitals and emergency rooms; and anyone in the community who is concerned about or interested in sickle cell.
Who needs the Sickle Cell Program?
Our Sickle Cell Program serves people who have sickle cell disease or sickle cell trait and people who want to know more about sickle cell.
Here are some of the many types of people we work with:
- Children who have sickle cell disease and their families
- Parents who have a child with the disease and who want to know about the risk of having another child with the disease
- Family members of a patient who want to find out whether they carry the trait and what this may mean for them
- Any other person who wants to find out whether they carry the trait and what this may mean for them
- Any person who wants to know more about sickle cell disease and trait
- Any schools or community groups that are interested in learning about sickle cell disease and trait