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.
Stem cell transplantation
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.
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.