What is newborn blood spot screening?

After your baby is born, a small blood sample will be collected along with identifying information, and this will be sent to the NJ newborn screening laboratory where it will be screened for over 60 disorders. This is done to ensure the health of your newborn through the early identification of disorders that can result in physical and/or mental disabilities if they remain undetected and untreated. To learn more about newborn blood spot screening, please visit our main page:
PHEL Newborn Screening Laboratory

How is the newborn blood spot screening procedure done?

The newborn screening blood spot specimen is collected by performing a procedure called a heel stick during which your baby’s heel will be pricked to collect a few drops of blood onto a special filter paper that will then be sent to the newborn screening laboratory.

When will my baby be tested?

All newborn screening blood spot samples should be taken between 24 and 48 hours of a newborn’s life.  An additional sample may be taken before or after that under special circumstances.

Will the heel stick procedure hurt my baby?

Though heel sticks are routine procedures, it has been reported to be a stressful event and creates discomfort for some babies. Some nonpharmacological methods for reducing pain include gently massaging the leg or providing non-nutritive sucking. Other methods for soothing newborns include breastfeeding and swaddling in an upright position.

Who will make sure my baby will receive a newborn blood spot screening?

A trained health care provider, such as hospital/birthing center staff (or in the case of a homebirth, a midwife), must make sure a blood spot specimen is collected following the birth of your baby. New Jersey law mandates that every baby born in New Jersey receives three newborn screening tests: blood spot screening, hearing screening, and critical congenital heart defects screening.

What are the benefits of newborn screening?

Newborn screening identifies infants that may be at risk for disorders which, if left untreated may result in developmental delays, physical and/or mental disabilities, and/or death.

Will the screening result tell me if my baby has the disorders being screened?

The results of screening tests do not establish a diagnosis, but rather serve to identify infants who need further testing.

Are there any side effects of newborn blood spot screening?

Some babies may display redness or bruising at the prick site. This should disappear within a few days.

Which disorders will my baby be screened for?

The state of New Jersey screens for over 60 disorders. For a complete list of all disorders screened for in New Jersey and for more information about these disorders please follow the link to our page regarding tests screened. Other disorders that are not detected by newborn screening can occur.

Who decides which conditions are screened for and how are conditions added to the newborn screening panel chosen?

New Jersey has a Newborn Screening Advisory Review Committee (NSARC) that reviews potential disorders for addition to the New Jersey Newborn Screening panel and makes recommendations to the Commissioner of Health, who makes the final decision about adding a disorder to the panel.

How common are the disorders on the screening panel?

All the disorders are uncommon or rare. To learn more about each condition please visit: Baby's First Test

How are disorders treated?

If your baby screens positive for a disorder, the Newborn Screening and Genetic Services Program, part of the division of Family Health Services, will reach out to you promptly offering information about your newborn’s screening results and referring you to a specialist and/or support services. For more information about treatment of specific disorders please refer to detailed information provided by Baby's First Test

What if I want my baby tested for something not on the required screen?

New Jersey law requires health care providers to tell expecting parents about supplemental screening. New Jersey currently tests for over 60 disorders; however, there are more disorders that can be detected with supplemental screening. Supplemental screening, if desired, needs to be arranged by the parents. It is performed by a private laboratory; the kit needs to be purchased by the parents prior to delivery and may not be covered by insurance. 

What is the difference between prenatal screening and newborn screening?

Prenatal screening is done before the baby is born and newborn screening is done after the baby is born.  All babies get newborn screening for the same set of disorders, but prenatal screening varies with the parents’ preference, the health care provider’s judgment and the lab doing the testing. 

My baby had a repeat screening done, why wasn’t he/she screened for the complete panel of disorders again?

If your baby requires repeat screening because he/she had abnormal or out of range results for a disorder, repeat screening analysis testing will only be performed for the specific disorders that initially screened as out of range.

Can newborn screening results be wrong?

Newborn screening tests are not diagnostic tests. They identify babies who need further testing. 

Is there a cost for newborn screening and how is screening paid for?

Initial newborn blood spot screening collection forms are purchased by birthing hospitals and midwives at a cost of $150.00 per form. This cost covers all the screening tests and assuring that the family and doctors are aware of out-of-range results. 

My baby looks healthy, and we have no family history of these disorders. Is screening necessary?

Most newborn screening conditions are not apparent at birth, but if left undetected and not treated early in life, can lead to problems that include intellectual disability, physical disability, or even death.

Does my baby need to have newborn screening tests done?

Yes. New Jersey requires screening to be performed on all newborns.  Parents can decline testing if the testing is contrary to their religious beliefs. Parents should first discuss this decision with a health care professional as newborn screening is designed to protect the health of the baby. Refusals must be documented.

How will I get the results of my baby’s test?

To obtain the results of your baby’s newborn bloodspot screening, please contact your newborn’s primary health care provider.

Can parents call the newborn screening lab to get the results of their newborn’s screening tests?

No.  The way the laboratory assures that your baby’s information remains confidential is to only release results to medical professionals. Please contact your baby’s primary health care provider.

My child is going to college, and I need his/her sickle cell results. How do I go about getting these results?

Please complete, sign, and return a Sickle Cell Records Release Authorization Form to the newborn screening laboratory to have your child’s results sent to your child’s primary care provider or college athletic department. Alternatively, ask your primary care provider to order a sickle cell test at your local laboratory. 

I was told my baby needs the newborn screening test repeated.  Why?

All newborns have a blood specimen taken after birth for newborn screening. You baby may need a repeat specimen if the first one was unsatisfactory, the test results are not clear, your baby had a transfusion and/or your baby was born prematurely.

If my baby needs repeat screening, does that mean my baby has a disorder?

Screening tests detect potential disease indicators but do not establish definitive disease presence or absence. There are several reasons why a repeat screening test may be required. See the question and answer above.

My baby needs to have a repeat specimen collected.  Where do I take my baby to get it done? 

Ask your primary health care provider for guidance.  You may need to contact the hospital where your baby was born.  If your baby was not born in a hospital, contact the person who helped you deliver your baby. 

My baby’s newborn bloodspot screening results are normal. Is there anything else I need to do?

Babies with normal, or in-range results, do not need further screening or follow up.  If your baby’s health care provider is concerned that your baby might have something wrong, he/she may want you to get testing done despite a normal newborn screen.

My baby was in the neonatal intensive care unit (NICU) for a while, did he/she receive the newborn bloodspot screening?

Yes! All newborn babies receive a newborn screen and those in the NICU usually get more than one screen, depending on how long they were there.  If your baby was transferred from the birth hospital to a NICU in another hospital, both hospitals submit specimens for newborn screening.

Can I get my baby's test results from New Jersey if I move to a different state?

The state of New Jersey keeps record of bloodspot screening results for 23 years, so if you happen to move to another state following the birth of your baby, your child’s screening results can be obtained by his or her new primary health care provider by contacting the New Jersey Department of Health’s Newborn Screening Laboratory Office.

We have adopted a baby. Can we have a newborn blood spot screening test done for our baby?

Yes! You should check with your adoption agency to see if newborn screening was performed. If it was not done ask your primary health care provider to send a specimen to the NJ newborn screening laboratory if your baby is under six months. If your baby is older, talk to your primary health care provider about what testing needs to be done.

Is newborn screening the same thing as a “PKU” test?

Some health care providers refer to newborn screening as a “PKU” test because that was the first newborn screening test done more than 60 years ago. However, this is outdated and misleading because the PKU test is only one test out of the whole panel of disorders tested for.

Where can I get additional information?

Detailed information regarding newborn screening can be found throughout our website, or you may choose to explore additional helpful resources that can be found on our page for Parent Resources