(SIK-uhl SEL uh-NEE-mee-uh)
If your baby’s blood spot screening result for Sickle cell anemia (Hb SS) is out-of-range, your baby’s healthcare provider will contact you. Together, you will discuss next steps and follow-up plans.
False-positive newborn screening results for this condition do occur. An out-of-range result may occur because the initial blood sample was too small or the test was performed too early.
An out-of-range screening result does not mean that your baby definitely has Sickle cell anemia (Hb SS). It does mean that your baby needs more follow-up testing. Follow-up testing will involve checking your baby’s blood sample for abnormally shaped red blood cells. If your baby has Hb SS, they will have a large number of red blood cells that are sickle or crescent-shaped rather than donut-shaped. Clinical genetic testing for Hb SS is available and may be necessary to confirm the diagnosis.
You should complete any recommended follow-up testing as soon as possible. Babies with this condition can have serious health problems in the first few months after birth if they are not diagnosed and treated quickly.
Next Steps
Parent-to-Parent Connection: After following up with your baby’s healthcare provider, you may want to speak with a parent whose child received an out-of-range screening result or has been diagnosed with Hb SS. If so, contact Raising Special Kids at 602-242-4366 or info@raisingspecialkids.org to request a parent-to-parent connection.
Arizona Early Intervention Program: Because a diagnosis of Hb SS anemia may affect a baby’s development, they are often referred to the Arizona Early Intervention Program (AzEIP). If you haven’t heard from AzEIP or would like to learn more about the program, visit https://des.az.gov/azeip.
Arizona Health Care Cost Containment System: AHCCCS is Arizona’s Medicaid program. If your baby is diagnosed with Hb SS they may be eligible for health coverage through AHCCCS at no cost to you.
Arizona Long Term Care System: ALTCS benefits may be available if your baby is diagnosed with Hb SS. You can learn more about the program at https://www.azahcccs.gov/Members/GetCovered/Categories/nursinghome.html.
Resources
Sickle Cell Connect: Family-focused, research-supported resources for parents and professionals https://www.sicklecellconnect.com/
Sickle Cell Disease Association of America This organization serves as the national voice for SCD working to resolve issues surrounding sickle cell disease and sickle cell trait. Since 1972, the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions. https://www.sicklecelldisease.org
Arizona Sickle Cell Association is a subsidiary of the Arizona Blood Alliance. They are dedicated to serving Arizonans with sickle cell disease through advocacy, education and community events. https://www.azbloodalliance.org/azsicklecell.