Parent Stakeholder

Additional Resources

Baby's First Test: The nation's newborn screening clearinghouse - Facts, advice and support for parents and professionals
Save Babies Through Screening Foundation: A non-profit organization that advocates for comprehensive newborn screening
American Academy of Pediatrics NBS Parent Flier
March of Dimes: Leads the fight for the health of all Moms and babies
HRSA Newborn Screening: HRSA’s Newborn Screening Information Center (NBSIC) provides clear and up-to-date information, materials, and resources about NBS in the U.S.
National Organization for Rare Disorders (NORD): NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

The Connecticut Newborn Screening Program
(CT NBS)

Bloodspot Test

Every baby born in Connecticut receives a newborn screening (NBS) bloodspot test. This is done by taking a few drops of blood from the baby’s heel one to two days after birth. The blood is sent to the Connecticut State Public Health Laboratory where testing can detect over rare but treatable conditions and disorders.

Babies with one of these disorders may not look sick when they are born, however, they may have slow brain growth and trouble eating and gaining weight. They may also become very sick and sometimes die. NBS helps to find babies with these rare disorders, so treatment can start early. Early treatment can help prevent serious illness and death.

If your baby has a “screen positive” (sometimes called an out-of-range or abnormal result), it does not mean that your baby is sick or has a disorder. It means that further evaluation is needed.

There are many things that can cause a screen positive or out-of-range result:

If you took certain medications while pregnant
If your baby was born early
If your baby’s blood was collected too soon
If your baby had certain treatments while in the hospital
For many other reasons

If your baby has a screen positive or out-of-range result the CT NBS Program will report the result to your baby’s doctor and your doctor may:

Examine your baby
Ask about conditions that run in your family
Repeat the bloodspot screening
Order additional tests
Have your baby see a doctor who specializes in newborn screening related disorders