Sickle Cell Program

What is sickle cell anemia?

Sickle cell anemia is part of a group of conditions called hemoglobinopathies. Hemoglobinopathies are conditions that occur when a person has abnormal hemoglobin. A person’s blood cells use hemoglobin to carry oxygen from the lungs to other parts of the body.

When a person has sickle cell anemia, his or her blood cells change shape. Instead of being round and flexible, the red blood cells become curved and stiff. These cells resemble the “sickles” that farmers used to use to cut grasses, which is how sickle cell anemia got its name. Instead of passing through the body's blood vessels easily, sickle cells get “stuck” in the blood vessels. As a result, the body’s tissues don’t get enough oxygen.

Sickle cell anemia is an inherited (passed from parent to child) condition. Everyone inherits two copies of the sickle cell gene (one from our mothers and one from our fathers). A gene is a set of instructions that tells our bodies how to grow and develop.  Sometimes, these genes have changes (also called mutations) that prevent the gene from working correctly.  People with sickle cell disease have two sickle cell gene changes. People with sickle cell trait have one sickle cell gene change.

People with sickle cell disease can have health problems including pain, infections, and damage to the body’s organs. People with sickle cell trait usually do not have any of these health problems, but have a higher chance of having a child with sickle cell disease.

How is newborn screening for sickle cell anemia done?

Indiana state law requires that all babies in Indiana be tested for sickle cell anemia as part of newborn screening. Newborn screening must be done before the baby leaves the hospital. Babies born at home must have newborn screening within one week of birth.

Before every baby goes home from the nursery, he or she has a small amount of blood taken from their heel. This is called a heelstick. The blood from the heelstick is used to test for a specific group of conditions, including sickle cell anemia. If anything concerning is found, the Newborn Screening Laboratory contacts the baby’s doctor.

For more information about Indiana’s newborn screens, please click here.

Click here to read the HIPAA Notice of Privacy Practice for the ISDH Newborn Screening Program (en español).

Brochures & Contact Information for Sickle Cell Services Providers

For more information about sickle cell disease, please click here (en español).

For more information about sickle cell trait, please click here (en español).

For current contact information for Indiana's sickle cell newborn screening follow-up sites, click here.

NCAA Request Documents

In order to request newborn screening results (including sickle cell results), please fill out both of the following forms here Health Information Access Request  and Request for Newborn Screening Results and return them to ISDH through postal mail (address provided on form) or fax (Fax #: 317-234-2995).

If you are a parent requesting results on your child, you may do so only if your child is under the age of 18. Individuals age 18 and older must complete the request themselves. Please note that these results are also typically available through your/your child's pediatrician, and you may be able to obtain these results more quickly through them.

Resources for Families of Children with Sickle Cell Anemia

For a list of resources for families of children with newborn screening conditions, please click here.

For more information about sickle cell anemia, please click on one of the links below.

  • All Reference Health
  • American Sickle Cell Anemia Association
  • KidsHealth
  • Living with Sickle Cell (video) - Memorial Hospital of South Bend
  • Mayo Clinic
  • Medline Plus Medical Encyclopedia
  • National Heart Lung and Blood Institute
  • NCAA - Sickle Cell Trait Educational Materials & Resources for Student-Athletes
  • Sickle Cell Disease Association of America, Inc.
  • Sickle Cell Information Center
  • Teens Health