SCID Newborn Screening Timeline in the United States 4

Newborn screening timeline

On May 21, 2010, the Department of Health and Human Services (HHS) announced the addition of Severe Combined Immune Deficiency (SCID) to the recommended uniform screening.

SCID is a primary immunodeficiency disease. Affected infants lack T lymphocytes, the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive.

SCID has been characterized in the medical community as a pediatric emergency. If a baby with SCID receives a bone marrow transplant in the first 3.5 months of life, the survival rate can be as high as 94 percent. However, the survival rate drops to less than 70 percent for infants who are transplanted after that age. The main causes for the drop in survival rate are serious infections babies with SCID developed prior to transplantation.

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was chartered in February 2003 to perform evidence-based reviews and advise the Secretary regarding application of new screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. SCID is the first new disease to be added to the federal uniform core-screening panel by the evidence-based Committee review process.

As of December 10, 2018, all 50 states are screening for SCID.

4 thoughts on “SCID Newborn Screening Timeline in the United States

  • melissa bornheimer


    My name is Melissa Bornheimer. My son Dawson was the baby that was born in Wisconsin who’s life was saved because of the SCID newborn screening. He will be turning 3 in June and is doing absolutely wonderful! If there is ever anything that you guys need help with please don’t hesitate to ask. Wisconsin is up in arms with our new Governer and there is talk that our newborn screening for SCID could actually get cut because of budget issues. We are putting together a task force to try to nip this in the bud. So far there is no news yet….so we wait. I am always looking for any way that I can be a help, so again, if you ever need anything please let me know.

    Thank you so much for all that you do!
    Melissa Bornheimer


  • cindy

    i was born a carrier of SCIDS.. and i am currently pregnant with my first.. he is a boy and i was tested and it came back positive.. i watched my brother die from it back in 1994, he was only 4 when he passed and i’m terrified that i will have to watch my son die :*(.. is there any advise you can offer to me.. I’m talking to my doctor and a specialist at the university of utah.. but I feel so helpless and unsure what i should do.. i am trying to find out as much as i can!!! but stressed and so alone in this process that i feel like im lost… so any help would help!!! i don’t really know where to go from here…

  • Heather Post author

    Hi Cindy,
    I’m sorry to hear that your baby boy will be born with SCID. I know how scared you must be feeling right now, as I felt the same way. Please know you are not alone! Knowledge is power and you are doing the right thing by gaining as much right now as you can. Please feel free to email me at anytime and we can “talk” further.

  • Heather Post author

    So nice to “meet” you! I’m so glad to hear that your son is doing so well, that’s wonderful!!! I certainly hope that when the pilot program is done in Wisconsin, newborn screening for SCID will continue. Please, let’s keep each other posted on this issue and thank you again for contacting me. You can email me anytime at

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