It’s estimated that 1500 Hoosiers are currently living with Sickle Cell Disease (SCD), while even more carry the trait and could pass this life-threatening disease on to their children. Since 1985, all babies born in Indiana have been tested for this and many other conditions. Here’s what you need to know.
Common scenario: You just welcomed your baby to your family. Several days later, you get a call from your pediatrician saying that your baby’s Indiana newborn screen result shows he or she has sickle cell trait. You aren’t sure what the Indiana newborn screen really is or what the result for sickle cell trait means for your baby and family.
What is the newborn screen? The newborn screen is a group of tests completed in the first 48 hours of life. It is used to identify babies who are at risk for certain health conditions, some of which may lead to life-threatening complications if not identified and treated early. All babies in the state of Indiana are screened for over 50 conditions, including sickle cell trait.
What is sickle cell trait? Sickle cell trait is an inherited blood condition, most commonly seen in individuals of African American, Hispanic/Latino, South Asian, and Middle Eastern descent. As many as 1 in every 10 individuals from these backgrounds have sickle cell trait. However, anyone from any race or ethnicity can have sickle cell trait.
Do children with sickle cell trait get sick? In general, most individuals with sickle cell trait do not have any symptoms or complications. However, there are some circumstances where extreme conditions (like high-intensity physical activity, high altitude, or severe dehydration) can cause symptoms such as blood in the urine, reduced blood supply to the spleen, or muscle breakdown. A very rare form of kidney cancer has been associated with sickle cell trait.
What causes sickle cell trait and how did my child get it? We all have genes that we inherit from our parents. Because of this, we each have two copies of most genes. Sickle cell trait is caused by one copy of the HBB gene having a specific change (or mutation) that alters how it works in the body. When both copies of the HBB gene have this specific change, a person will have sickle cell disease. In almost all instances, an individual with sickle cell trait inherited the HBB gene with this specific change from a parent.
What does this mean for my other (or future) children? When both parents have sickle cell trait, they have a 1 in 2 (50%) chance to have a child who has sickle cell trait and a 1 in 4 (25%) chance to have a child with sickle cell disease. If your baby has sickle cell trait, talk to a genetic counselor or doctor about how you can learn whether you, your partner, or both of you have sickle cell trait.
If I want more information on sickle cell trait who should I contact? The Indiana Hemophilia and Thrombosis Center specializes in treating patients with sickle cell disease. To learn more information about sickle cell trait, visit the IHTC’s website at www.ihtc.org/sickle-cell-disease or reach out to our IHTC sickle cell team by calling 317-871-0000 extension 554.