Pediatric Diamond-Blackfan anemia (DBA): Expert care for a rare condition

Diamond-Blackfan anemia (DBA) is a rare blood disorder that is usually diagnosed in children during their first year of life. Children with DBA do not make enough red blood cells. These are the cells that carry oxygen to all other cells in the body. Blood cells are made in the bone marrow. In children with DBA, many of these cells that would have become red blood cells die before they develop.

• Pale skin

• Sleepiness

• Irritability

• Rapid heartbeat

• Heart murmur

Diagnosis

A diagnosis of DBA usually begins when your child's doctor finds signs or symptoms of anemia during a routine exam or after a routine blood test. To make a full diagnosis, your child’s doctor will review medical history and complete a physical exam. A final diagnosis will be made after blood sample and bone marrow testing. 

The most common treatments for DBA include:

• Steroids: These strong drugs fight inflammation in the body and allow 80 percent of people with Diamond-Blackfan anemia to begin making more red blood cells. 

• Blood transfusion: A blood transfusion is when a donor's blood is transferred to a patient through their vein.

• Bone marrow transplant

Fighting pediatric cancer and blood disorders

The UW Carbone Cancer Center offers the most advanced treatment options. Our pediatric cancer and blood disorder experts are national research leaders. We test new therapies and continue to work on therapies for pediatric cancer and blood disorders. For many children with rare or hard-to-treat conditions, clinical trials provide new options.

Search our clinical trials

Your child’s care is our top priority and we understand the unique needs they have. Your child’s team will include:

• Oncologists (cancer doctors)

• Hematologists (blood disease doctors)

• Nurse practitioners

• Child life specialists

• Pain management specialists

• Physical, occupational and speech therapists

• Radiologists and radiation technologists

• Social workers

• Surgeons

UW Health Kids | Carbone Cancer Center experts are dedicated to diagnosing and treating all infants, children and adolescents with blood disorders, including Diamond-Blackfan anemia.

Our pediatric hematologists are part of the UW Carbone Cancer Center, which is a National Cancer Institute-designated Comprehensive Cancer Center. This designation means that the doctors taking care of your child are experts in cancer and blood disorder treatment, research and education. 

When your child needs hospitalization, they will be admitted to American Family Children's Hospital in Madison, Wis.

Child life specialists help your child and family cope with any fears and anxieties. The American Family Children's Hospital patient and family visitor guide features information about:

• Hero beads

• Hospital school

• Positive Image Center

• Restoring Hope Transplant House (for blood and bone marrow transplant)

• Spiritual care services

• Tyler's Place (sibling child care)