Hemoglobin disorders program
Our program is designed to meet the needs of the whole patient and family. Our multidisciplinary team includes hematologists (physicians specializing in diseases of the blood), hematology nurse specialists, a nurse practitioner, a social worker and a genetic counselor — all with advanced training in caring for patients with sickle cell disease and thalassemia.
Newborn diagnosis and treatment
Children born in Illinois are given a blood test at birth (newborn screening) that screens for the child's hemoglobin type. Newborn screening allows infants with abnormal hemoglobin to be identified within the first weeks of life. After diagnosis, the child's primary care physician is notified of the child's health status and a referral is made to the hemoglobin disorders program for confirmation and treatment. Medical care begins upon diagnosis and parents are educated about disease management. A certified genetic counselor provides genetic testing, education and counseling to families.
Emergency and inpatient hospital care
Hematology patients who require emergency care are seen in Children's Memorial's Emergency Department. A physician with knowledge of hemoglobin disorders is always available to provide consultation and care.
Our Stem Cell Transplant Program specializes in stem cell transplantation for infants and children from birth to 21 years of age for a variety of diseases and syndromes. More here on this program »
Outpatient day hospital
Blood transfusion support including erythrocytapheresis therapy, a technique where existing blood is removed as donor blood is infused, are performed at Children's Memorial's Day Hospital, located adjacent to the hematology program space.
Family support services
Chronic disease can be challenging for the entire family. Our hematology social worker helps maximize families' abilities to cope with psychosocial stressors through assessment, counseling, crisis intervention and connecting families with appropriate resources. More here about support services »
Education
Patient and family education begins with diagnosis and continues as an important part of all patient visits. Special attention is given to teen patients to foster participation in their care and to ensure that they have the knowledge necessary to manage their health needs into adulthood.
Research
Our program participates in National Institute of Health (NIH), industry and institutionally sponsored clinical studies on a regional and national basis. Children's Memorial staff actively participate in research with the goal of improving the quality of life for patients and adding to the body of knowledge about the treatment of hemoglobin disorders. Recent research efforts include:
- Investigation of cardiac and pulmonary complications of sickle cell disease
- Participation in the NIH-funded sickle cell disease clinical research network
- Prevention of blood borne infections and other complications of thalassemia
Community outreach
Our team works closely with community-based advocacy groups including the Sickle Cell Disease Association of Illinois and Cooley's Anemia Foundation. We also provide education to other hospital staff, primary care physicians, schools and the community at large. Our experts are frequent presenters at medical conferences and symposiums.