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Frequently Asked Questions for Families

Frequently Asked Questions

Information for Families

What are the limitations of newborn screening?

Newborn Screening cannot detect every congenital disorder (a disease or abnormality present at birth). The screening is limited to the disorders outlined above. If your baby doesn’t seem right, contact his/her doctor.

Is the test ever wrong?

Some families are contacted after an abnormal result even though their baby is perfectly healthy. This is called a false positive result and this is verified with further testing. We take measures to minimize the number of families we contact, while we try to ensure we find as many babies as possible who really do have these diseases.

How will I learn my baby’s results?

You will learn your baby’s results from the hospital of birth, your baby’s primary care doctor, or in some cases, a specialist. The hospital will give you the parent’s (pink) copy of the blood collection form with a laboratory identification number on it. Be sure to show or give this pink copy to your baby’s doctor because it will allow them to access the results. We encourage all parents to know their baby’s newborn screen result.

What happens if newborn screening identifies a possible health concern for my baby?

Your baby will need additional testing to determine if they have the disorder because the screen only identifies babies who are at risk. It is not a diagnostic test. Additional testing could be either a repeat newborn screen or tests ordered by a medical specialist.

I received a letter in the mail, why does my baby require a repeat newborn screening specimen?

A repeat blood specimen could be required for several reasons:

  • The blood specimen submitted by the hospital could not be tested for a number of reasons, most commonly this is because there was not enough blood collected or the blood was clotted.
  • The first specimen was drawn when your baby was less than 24 hours of age.
  • There was a mild abnormality in the first screen result.

Please call your baby’s doctor to find out why another specimen is required.

My baby needs to have a repeat newborn screening specimen drawn, but my doctor’s office doesn’t do them. Where do I take my baby for a repeat specimen and do I have to pay to have this done?

Call the newborn nursery at the hospital where your baby was born and find out what their policy is. Ask where you should bring your baby and whether or not you have to make an appointment. There is no charge from NYS Department of Health Newborn Screening Program for the repeat laboratory testing; however, some hospitals may charge for the blood collection. If your baby was not born in a hospital, please contact your midwife or birth attendant for specimen collection options.

What is the Newborn Screening Program?

The New York State Newborn Screening Program is a mandated public health service provided to all infants born in NYS for early detection of specific disorders that can affect newborns or children.

Where is the testing performed?

The NYS Newborn Screening Program laboratory is located in Albany, NY. The Program is part of the Wadsworth Center which is the Public Health Laboratory of the NYS Department of Health.

How is newborn screening performed?

A blood sample is collected from the heel of every newborn prior to leaving the hospital. The blood sample is received by our laboratory and specialized equipment is used to measure substances in the blood.

What are the benefits of newborn screening?

Newborn screening allows for early detection of certain potentially treatable disorders which results in early treatment and ultimately better health outcomes. Almost always, babies found to have these diseases initially appear healthy. About 1 in 300 babies born in New York State have one of the over 40 disorders detected by the dried blood spot testing.

What if we just moved to New York state?

The Newborn Screening Program will screen a blood sample until your baby is one year of age; however, our tests are optimized for newborns (<28 days old).

Do I have to pay for the screening?

There is no charge for the services provided by the NYS Newborn Screening Program. Some doctors’ offices and hospitals charge a fee to collect the blood sample.

Is newborn screening required?

Yes. New York State law mandates that all infants be screened. This is because of the significant benefit of testing to any affected infant. Infants are only exempt if the parent or guardian is a member of a recognized religious organization whose teachings and tenets are contrary to this testing. For exempt infants, a Refusal of Newborn Screening Form should be submitted to the Newborn Screening Program and a copy maintained in your baby’s medical record.

What conditions are included in the NYS Newborn Screening Panel?

There are more than 40 disorders on the NYS Newborn Screen Panel. Please refer to the Screened Disorders page for a complete listing, including endocrine (hormone) disorders, hemoglobin (blood) disorders, exposure to HIV-1, metabolic disorders, cystic fibrosis, Krabbe disease, severe combined immunodeficiency and x-linked adrenoleukodystrophy.

Who decides which conditions are included in newborn screening?

The conditions included on the newborn screen are specified in NYS public health law. The law can be modified by an act of the NYS Health Commissioner, Legislature or Governor. The Secretary of the U.S. Department of Health and Human Services also recommends a minimal newborn screening panel based on review of available medical evidence.