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MACC Fund Center for Cancer and Blood Disorders
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- Aplastic anemia
- Blood and Marrow Transplant and Cellular Therapy Program
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Thalassemia program
Thalassemia are a group of lifelong inherited blood disorders caused by genetic changes of hemoglobin, the protein in red blood cells that carries oxygen throughout the body. These disorders cause the red blood cells to become fragile, and the body is not able to make enough red blood cells and hemoglobin. This is called anemia. There are many types of thalassemia, which range from being a carrier or having thalassemia trait, to those who require chronic blood transfusions. Children with the most severe form of thalassemia are often diagnosed in the first few months of life, while those with intermediate or mild disease may be older when first diagnosed.
As the largest comprehensive pediatric thalassemia program in the state, Children’s Wisconsin offers multi-disciplinary and holistic care, from physical health to social and emotional wellbeing. Our expert physicians, nurses, social workers, psychology and neuropsychology team and an array of other specialists are committed to serving our patients living with thalassemia.
Our program is dedicated to pediatric thalassemia and is part of the Central Region Thalassemia Consortium (CRTC) and Cooley’s Anemia Foundation provider programs.
Our care team
Pediatric hematologist
Our board-certified physician specializes in the study and treatment of thalassemia.
Pediatric endocrinologist
Our board-certified physician specializes in the growth and development of children with thalassemia.
Pediatric cardiology
Thalassemia can cause effects on the heart from the stress of anemia and from excess iron. Our program has a dedicated pediatric nurse practitioner who specializes in these effects and will provide individualized care for children with thalassemia.
Nutrition
Thalassemia can cause deficiencies in macronutrients and micronutrients. Our program has a dedicated dietician who will provide resources or recommend diet changes to help your child feel their best.
Audiology
Children with thalassemia may be on iron chelation medications, which can lead to an increased risk of hearing loss. Our program has a dedicated audiologist through Children’s Wisconsin with expertise in the effects of iron chelation and thalassemia, who provides hearing screening, recommendations and treatment plans for patients on iron chelation medications.
Nurses
Our program has dedicated pediatric nurse practitioners who see patients in our day hospital, as well as a nurse coordinators who manage and coordinate care for children with thalassemia. Our nursing team includes:
- Mary Wagy
- Sandy Steffes
Neuropsychometrist
Our neuropsychometrist specializes in the connection between the brain and behavior. They provide learning and memory testing and work with schools on patients’ individualized education programs (IEP). Developmental screening is also available for younger children.
Psychologist
Our chronic disease-based psychologist provides support for our children with thalassemia and their families. These services include behavior management for young children, psychological screening for older children, ongoing counseling for patients and families and support for nonpharmacological pain management.
Genetic counselor
Thalassemia is caused by a genetic mutation inherited from both parents. Our genetic counselor helps families understand how the condition occurs, the implications for other family members, and, when appropriate, what thalassemia means for patients’ eventual family planning.
Bone marrow transplant and cellular therapy
Our program works closely with our partners in bone marrow transplant and cellular therapy within the MACC Fund Center for Cancer and Blood Disorders to offer curative and disease-modifying therapies for thalassemia.
Social work
Our program includes a dedicated social worker, Nicole Barnes, MSW, who helps our families access the resources and support they need.
A Children’s Wisconsin hematologist is on call 24 hours a day for children with thalassemia who need urgent medical attention.
Why choose Children’s Wisconsin?
If your child has been diagnosed with thalassemia, it may feel overwhelming to navigate the collective needs including appointments, transfusions and medications that will lead to the best outcomes.
Our comprehensive thalassemia clinic coordinates all your needs like a one-stop shop where your family has access to resources within the MACC Fund Center for Cancer and Blood Disorders and multidisciplinary expertise – all in one visit. Each child has an annual visit with all our experts, along with any care that is needed in between. Our nurse clinicians and schedulers help coordinate additional visits, labs, tests and medications to ensure your child is receiving the best care.
If your child has transfusion dependent thalassemia, they will be seen in the Northwestern Mutual Day Hospital every 2-4 weeks. Your child will have an individualized plan for transfusions and medications, which is cultivated by our team of physicians and nurse practitioners. Our patients become part of our thalassemia family and are treated as individuals. We have interpreter services available for all patients who speak languages other than English.
Our thalassemia team also provides second opinions and supportive care for patients living with thalassemia by partnering with neighboring programs.
Contact us
To make an appointment or refer a patient:
- Phone: (414) 266-2420
- Fax: (414) 266-6837
Education
Make an appointment
To make an appointment, call our Central Scheduling team or request an appointment online.