Sickle cell disease program

As the largest comprehensive pediatric sickle cell disease program in the state, Children’s Wisconsin offers care for the whole child, from physical health to social and emotional wellbeing. Our expert medical providers, nurses, social worker, genetic counselor clinical navigator, psychology and neuropsychology team, research scientists, and an array of other specialists are committed to helping our more than 400 patients and their families navigate life with sickle cell disease.

We are also on the cutting edge of research for sickle cell disease. Our program was among the first in the world to treat children with sickle cell disease using hydroxyurea, a medication that helps reduce hospitalizations, pain events, and the need for blood transfusions. Researchers in our program are currently leading the way to a better understanding of what causes pain in individuals with sickle cell disease with the goal of developing better treatments for pain. Our scientists have developed tools to assess how sickle cell disease impacts the well-being of children and their families. Children’s Wisconsin is one of the selected clinical research sites for the ASH Research Collaborative Sickle Cell Disease Clinical Trials Network, giving our patients access to the latest therapies. Research in the sickle cell disease program is funded by the National Institutes of Health, Centers for Disease Control and Prevention, the Midwest Athletes Against Childhood Cancer (MACC Fund) and other local and national foundations. 

Our care team

Located in the MACC Fund Center for Cancer and Blood Disorders at Children’s Wisconsin, our sickle cell program is staffed by a multidisciplinary team of dedicated disease specialists. Our care team includes:

• Pediatric hematologists - Our board-certified hematology physicians, Amanda Brandow, DO, MS (Director of Comprehensive Sickle Cell Disease Program); Melissa Azul, DO; and Allison Remiker, MD are specialized in the treatment of children with sickle cell disease.
• Nurses - Our program has two nurse coordinators, Nidra Moore, RN, BSN and Teresa Harrison, RN, who manage and coordinate care for children living with sickle cell disease.
• Neuropsychometrist – Sickle cell disease can cause neurocognitive complications, which can disrupt the brain’s ability to think and reason. These complications can make school a struggle for children with sickle cell disease. Our neuropsychometrist, Meghan Miller, LPC, specializes in the connection between the brain and behavior. She provides learning and memory testing and works with schools on patients’ individualized education programs (IEP). Developmental screening is also available for younger children.
• Psychologist - Our chronic disease-based psychologist, Jeffrey Karst, PhD, provides inpatient and outpatient support for our children with sickle cell disease 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.
• Social worker - Our program includes a dedicated social worker, Nicole Barnes, MSW, APSW who works to help our families access the resources and support they need.
• Clinical navigator - Our team includes a Clinical Navigator, Barbara Bell, who is a certified Sickle Cell Disease Community Health Worker who guides our families to resources in the community to improve the holistic health of the children cared for in our program.
• Genetic counselor - Sickle cell disease is caused by a genetic mutation inherited from both parents. Our genetic counselor, Stephanie Rose, MS, helps families understand how the condition occurs, the implications for other family members, and, when appropriate, what sickle cell disease means for patients’ eventual family planning.
• Administrative coordinator - Our team is supported by an administrative Coordinator, Vickie Griffin, who supports the administrative aspects of our program including scheduling vital appointments and communicating with families upon clinic check-in and check-out.
• Curative and transformative therapies - Our program works closely with our partners in the Bone Marrow Transplant and Cellular Therapy Program to offer curative and transformative therapies for children living with sickle cell disease.
• Researchers - Our physician researchers conduct clinical research studies, laboratory studies and investigator-initiated trials to learn more about sickle cell disease and its treatments.

A Children’s Wisconsin hematologist is on call 24 hours a day, 7 days a week for children with sickle cell who need urgent medical attention. Children with sickle cell disease who have acute care needs and complications are treated in our Emergency Department. Our program has strong collaborations with providers in the emergency department to ensure children with sickle cell disease receive the best and safest care. 

Diagnosis and treatment

Sickle cell disease is a group of chronic blood disorders that affect hemoglobin, the protein in red blood cells that carries oxygen throughout the body. These disorders cause the normally disc-shaped hemoglobin to become misshapen, stiff, and sticky, making it less effective at transporting oxygen and more likely to cluster and form blockages in blood vessels. Sickle cell disease can cause several complications, such as chronic anemia, acute and chronic pain, increased risk for certain infections, and can affect the function of organs including the lungs, brain, kidney, spleen, heart and eyes. Sickle cell disease requires lifelong comprehensive care.  

At Children’s Wisconsin, our sickle cell disease program begins at diagnosis. Most of our patients receive their diagnoses shortly after birth, usually through the Wisconsin Newborn Screening Program. At a patient’s first visit, typically by two months of age, the child and family meet with our care team to begin a treatment plan and learn about the complications of sickle cell disease. Sickle cell disease complications often occur suddenly and without warning. We focus on education to help parents and guardians prepare and know when and how to seek care when needed.

Follow-up visits are scheduled at ages six months and one year. After that, we see our children with sickle cell disease annually or bi-annually for a comprehensive evaluation. These clinic visits include meetings with the care team, in-clinic laboratory testing, medication refills, radiologic studies, and certain immunizations. Children receiving medications, such as hydroxyurea, are seen every 2-3 months in our outpatient clinic. Children who receive chronic red blood cell transfusions or other therapies, are seen more frequently (e.g., monthly) in our Northwestern Mutual Day Hospital.

Our sickle cell disease team also works closely with other specialists and departments within Children’s Wisconsin to meet the varied needs of our patients. For instance, because children with sickle cell disease can experience recurrent pain, we frequently collaborate with the Jane B. Pettit Pain and Headache Center.

Children’s Wisconsin manages the care of children with sickle cell disease until age 19. Young adults are then transitioned to adult sickle cell specialists. Local young adults are referred to Froedtert Hospital’s Sickle Cell Disease Clinic for continued sickle cell care. Children’s Wisconsin offers the S.T.A.R, Program (Sickle Cell Transition Adolescent Resource Program) which is a unique, multidisciplinary clinic dedicated to preparing teenagers and young adults to smoothly transition to adult sickle cell care when they reach 19 years old. Through the S.T.A.R Program, we empower teenagers with knowledge about sickle cell disease and equip them with skills and the tools to independently manage their disease with confidence. Our sickle cell team works with Froedtert’s Sickle Cell Disease Transition Program to ensure optimal care transition. 

Contact the Children’s Wisconsin sickle cell disease program at (414) 266-2420 for appointments or more information.