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Story of an Alpha Thalassemia Baby

Living with Thalassemia

Living with Thalassemia
▶ Life Stages:
  1. Infancy
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Life Stages: Infancy


Most families find out about their child's diagnosis shortly after birth. Even for families who may be familiar with thalassemia, this can be a difficult time. Adjusting to a new diagnosis can be challenging. You will be getting lots of new information and meeting lots of new health care providers. Expect your child to reach normal developmental milestones.

What you can do:

  1. Use you support network. Talk with family members and friends who have been helpful in the past. You may even want to bring in part of your support network when you see the doctor. If you don't know someone with your child's disease, think about asking your doctor's office to introduce you to another family.
  2. It's okay to ask questions and to ask them more than once. Try to pay attention to how you manage information; some families prefer information in writing, some families prefer to hear less information at once. If you know your preference, share it with your health care providers.
  3. Take care of yourself. Your ability to take care of your child is directly related to how you are doing. Take time to relax, participate in fun activities, and enjoy the new member of your family.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3347   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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