FAMILIES

Frequently Asked Questions About Newborn Bloodspot Screening

Why does my baby need Newborn Screening tests?

Most babies are healthy when they are born. Babies are screened because a few babies may look healthy but may have a rare health problem. When problems are found early, serious health problems like mental retardation and even death can often be prevented.

How will my baby be tested?

Before you leave the hospital, a nurse will take a few drops of blood from your baby’s heel. This will usually occur at about 24 hours of age but this varies by program. The hospital will send the blood sample to a newborn screening lab. Other tests like hearing screening and screening for congenital heart defects may also be performed. Each state or other jurisdiction may have its own rules and regulations. Be sure that you understand what is required.

How will I get the results of the test?

Physicians caring for the newborn will be notified of screening test results.  These physicians will in turn discuss the results with the parents.  If additional tests are needed, the parents will be told.  A follow-up coordinator from the screening program will monitor to be sure that any further testing is conducted in a timely way so that treatment or management of a condition can be started quickly if needed.

How long will it take to get results?

Testing times vary from program to program. For blood testing, results are usually ready within 10-14 days after he sample is collected. If there are results that indicate the need for further testing, the results will likely be available within a few days. Your physician will be notified right away and should contact you quickly, particularly if further tests are indicated. Ask your doctor about the results. Do not assume that no news is sufficient. Be sure that the tests have been performed and that the results are known.

Your baby may be retested if you leave the hospital before 24 hours (for most programs, although time variations exist from program to program). Some programs require a second test on ALL babies at about 1-2 weeks of age. Some babies need to be retested because there is a problem with the blood sample or the results are unclear. A few babies need to be retested because the first test showed an increased risk for a health problem.

What if my baby needs to be retested?

Your baby’s doctor or a program follow-up coordinator will contact you if your baby needs further testing. They will tell you why more tests are needed and what to do next. A retest does not necessarily mean that your baby is sick, but it does mean that more testing needs to be done to be sure that your baby is healthy.

If your baby needs to be retested, get it done right away. Make sure that your hospital and doctor have your correct address and phone number.

What if my baby's screening test shows a problem?

You will be contacted if your baby needs any additional testing. This does not necessarily mean that your baby is sick. But, more tests are needed to be sure that there is not a problem. Your baby's doctor will let you know what tests are needed and how to get them. It is very important that you get these tests done to make sure that your baby is healthy. If your baby is sick, treatment may be needed right away. Speed in getting additional tests or doctor's visits is important since some of the conditions tested can result in early death if not acted upon quickly. If you need more information, please ask your doctor or call your state health department's newborn screening program.

Which disorders are screened for in my state

Select the preferred format below to view a chart of the conditions screened by each program. MS-Word, PDF

Where can I get additional testing (supplemental) for my baby?

Click the link below for a list of laboratories. These companies charge a fee for additional screening that may not be offered in your state. Laboratories that screen for additional conditions.

What if I have questions?

Ask your baby’s health professional if you have questions or concerns, or contact your state newborn screening coordinator. Newborn screening coordinators for state programs can be found here.