Bone marrow failure syndromes are blood disorders that happen when bone marrow (the red, spongy material inside our bones) doesn’t make enough blood. Bone marrow failure can happen because of a genetic condition a baby is born with, or it can happen due to an illness (leukemia) or exposure to an outside toxin or infection. The hematologists (blood disorder specialists) in our Nemours Center for Cancer and Blood Disorders (NCCBD) work closely with other top specialists to quickly diagnose and treat the cause of your child’s symptoms. In addition to medical excellence, our NCCBD care coordinators make sure your family has the education and support you need for each step of your child’s medical journey.
Bone Marrow Failure Syndromes
Coordinated Care for Bone Marrow Failure
Types of Bone Marrow Failure Syndromes We Treat
We see a full spectrum of conditions — far too many to list here. Some types of anemia are also classified as bone marrow failure syndromes. The conditions we treat vary depending on the location and providers selected. Don’t see a condition listed? Call us.
- aplastic anemia
- Diamond Blackfan anemia
- dyskeratosis congenita
- Fanconi anemia
- neutropenia (also called “Kostmann syndrome”)
- pediatric myelodysplastic syndrome or “PMDS”
- Shwachman-Diamond syndrome
- thrombocytopenia absent radius or “TAR syndrome”
Services We Offer for Bone Marrow Failure Syndromes
We offer a variety of diagnostic and treatment services, which may vary depending on the condition or location, including:
- blood and bone marrow transplants (also called “stem cell transplants”)
- bone marrow aspiration and biopsy for diagnosis and testing
- chemotherapy (cancer medicines)
- gastroenterology help with digestive care
- endocrinology help growth and hormones
- immunology care includes autoimmune disorder specialists
- genetic counseling since some syndromes are inherited (passed from parent to child)
- granulocyte-colony stimulating growth factor (or “G-CFS”) used to treat severe congenital neutropenia
- hormone therapy to improve blood counts in Fanconi anemia
- immunosuppressive therapy to keep the immune system from attacking healthy cells
- intravenous immunoglobulin or IVIG is added to strengthen the immune system
- nutrition plans from registered dietitians trained to care for kids with blood disorders
- pain management to ease symptoms
- palliative care helps with symptoms and offers support for your child and family
- physical medicine and rehabilitation offers physical, occupational and speech therapy
- psychology and psychiatry support services for your child and family
- steroid therapy to help increase hemoglobin or red blood cells
- surgery by our board-certified pediatric general surgeons to remove the spleen
- transfusion services and testing including red blood cell exchange transfusion
- transition of care when it’s time for adult care and services
Why Choose Us for Bone Marrow Failure Syndromes
Our renowned hematologists (blood disorder specialists) work together with oncologists (cancer doctors) and researchers in our internationally recognized Nemours Center for Cancer and Blood Disorders to care for children with all kinds of bone marrow failure. We are also actively involved in pediatric research and offer many opportunities for clinical trial enrollment. And since bone marrow failure syndromes are complex and can affect the body in many different ways, we coordinate our care to provide a personal treatment plan for your child. We also offer:
- continuous monitoring and follow-ups to anticipate and treat symptoms over time
- collaborations with our affiliates for the most advanced treatment options
- supportive services for your child and family today, and for the long term
Regional Bone Marrow Failure Syndrome Highlights
Services, programs, facilities and care teams differ at each location. Call for details.
We offer complete care for kids with bone marrow failure and anemia at Nemours/Alfred I. duPont Hospital for Children (Wilmington, Del.) and outpatient appointments at select Nemours duPont Pediatrics locations.
Our Palliative and Supportive Care Program located at duPont Hospital for Children (Wilmington, Del.) provides compassionate care for families and children coping with life-threatening or life-limiting conditions.
We offer complete care complete care for kids with bone marrow failure and anemia at Nemours Children’s Hospital (Orlando). Outpatient and follow-up appointments are available at select Nemours Children’s Specialty Care locations.
We offer complete care complete care for kids with bone marrow failure and anemia at Nemours Children’s Specialty Care, Jacksonville (working with Wolfson Children’s Hospital and Mayo Clinic in Jacksonville ). Outpatient and follow-up appointments are available at select Nemours Children’s Specialty Care locations.