When your child has sickle cell disease, you want a program that will focus on every aspect of treatment — from therapies that provide a better quality of life to support services for the entire family.
Our program focuses on treatments that modify the course of sickle cell disease (also called disease-modifying therapy) instead of only treating symptoms. We also focus on reducing sickle cell pain crises in children so they can lead more comfortable lives.
St. Louis Children’s Hospital has the largest pediatric sickle cell disease program in Missouri. As a regional referral center for children with sickle cell disease, we treat the most complicated cases and offer therapies that aren’t available elsewhere in the region.
Treatment for sickle cell has evolved over the last few decades. There are many more treatment options to keep children healthy and happy.
Advanced treatment options
We offer the following therapies that may improve your child’s quality of life:
- Hydroxyurea: This medication that can decrease sickle cell pain and other complications.
- Blood transfusion: These are used to treat symptoms such as anemia, chronic pain, acute chest syndrome and splenic sequestration.
- Stem cell transplant: A transplant of healthy stem cells from a donor can cure sickle cell disease.
Team approach to care
Our hematologists are world-class experts in their field. But your child may also need treatment from other specialists. We have:
- Pain management specialists, who treat the pain that often comes with sickle cell disease
- Neurologists, who research and treat complications such as stroke that affect the brain and other parts of the nervous system
- Psychologists, social workers and other support specialists, to help families cope with the challenges of sickle cell disease
Clinical trials can offer children access to new therapies before they are widely available. We participate in clinical trials through the National Institutes of Health (NIH), as well as studies offered through drug companies.
Our hematologists are currently working with our neurologists and radiologists to study silent stroke in sickle cell patients. These small areas of brain damage can cause problems with memory and learning that impact a child’s school performance. We have identified some abnormal blood flow in the brains of some sickle cell patients and are researching treatments.
Support for Families and Patients
Coping with chronic disease is tough for children and their families. We believe children with sickle cell need more than doctors.
We emphasize family support service because sickle cell is a lifelong condition. It impacts all aspects of a child’s life — physical, emotional and educational.
Our supportive care team includes:
- Nurse coordinators: Provide education and support for families on topics such as when to call the doctor’s office and what to do when your child has a fever or is in pain
- Child psychologists: Assist with coping skills and family challenges
- Child life specialists: Offer age-appropriate education, preparation and support for children and their families about procedures, what to expect during doctor or hospital visits and more
- Art therapists: Help children express their feelings through art to help decrease stress and develop coping skills
Sickle cell caregiver support group
Sickle cell caregiver support group meetings are held once a month. Parking validation, dinner and childcare are included.
Location: 11th floor, St. Louis Children’s Hospital:
- Room 11W40 for caregivers
- Room 11E34 for children
Time: Meeting times vary. Usually held on Thursday evenings. For more information and times, call 314.454.6018.
Help with school
A chronic condition like sickle cell disease can affect your child’s school performance. Children often miss school for appointments or illnesses. They may have learning difficulties as a result of the condition.
Teachers may not understand the challenges sickle cell presents for your child. Our Helping You Pursue Education (HYPE) program helps families get the support they need from schools. We will:
- Assist families with requesting and maintaining educational support
- Work with you and your child’s teachers and school administrators to make sure your child has the right school support
- Help you develop a written plan for school accommodations, like a 504 plan or Individualized Education Plan (IEP)
- Refer children for detailed neurocognitive testing and psychological support, if needed
Support for adults with sickle cell
Children eventually grow up, and they need to know how to take care of themselves.
We work with teenagers to make the transition to adulthood easier. We want children to handle their own office visits by the time they are 18. We do this by gradually increasing expectations and encouraging independence at office visits.
We also offer the only Young Adult Sickle Cell Clinic in the St. Louis area for patients ages 18–26.
Barnes-Jewish Hospital Center for Advanced Medicine
4921 Parkview Place
St. Louis, MO 63110
11133 Dunn Road
St. Louis, Missouri 63136