(Severe • combined • im-MYOO-noh-di-FISH-uhn-see)
If your baby’s blood spot screening result for SCID 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. Screening samples collected from babies who were born early (premature) or who are very sick (in the newborn intensive care unit, or NICU) for other reasons can have false-positive results. This screening can also pick up other conditions that affect the immune system.
An out-of-range screening result does not mean that your baby definitely has SCID. It does mean that your baby needs more follow-up testing. Those tests may include blood tests and genetic tests using a blood sample or other sample (collected from the mouth or skin, if needed).
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 SCID. 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 SCID 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 SCID, 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 SCID. You can learn more about the program at https://www.azahcccs.gov/Members/GetCovered/Categories/nursinghome.html.
Resources
SCID Compass: Family-focused, research-supported resources for parents and professionals https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/severe-combined-immunodeficiency-scid
SCID, Angels for Life Foundation This foundation offers emotional support to affected families while also providing limited financial assistance to families currently going through treatment for SCID. www.SCIDangelsforlife.com
The SCID Group The SCID Group is designed to help families dealing with Severe Combined Immune Deficiency (SCID) find a support network of similar families. www.SCID.net