About Expanded Newborn Screening

What is Newborn Screening?

Newborn screening are tests done on your baby before your baby leaves the hospital. These screening tests check for serious conditions in your baby. The tests will look for certain genetic and metabolic conditions, hearing loss, and specific heart problems.

A baby born with one of these conditions may not show any symptoms right away. However, the baby usually develops serious problems if he or she is not treated. Newborn screening helps to diagnose these babies early so that treatment can begin as soon as possible.

All babies born in the US get newborn screening. However, each state decides which conditions to screen for in babies born in their state. This is called the state’s newborn screening panel. To find out what conditions are on your state’s newborn screening panel, go to: http://www.babysfirsttest.org/newborn-screening/states

How is newborn screening done?

There are three different parts to newborn screening:

  1. Heel Stick:
    When a baby is between 12-48 hours old, a few drops of blood is taken from the baby’s heel. This is called a heel stick. The blood is usually placed on a small card. The card is sent to a laboratory where it is screened for different metabolic and genetic conditions.
  2. Pulse Oximetry:
    After a baby is at least 24 hours old, a small sensor is placed on the baby’s skin. This sensor is called a pulse oximeter. It does not hurt the baby and is painless. The pulse oximeter measures how much oxygen is in the baby’s blood. Babies who do not have enough oxygen in their blood could have a type of heart problem called Critical Congenital Heart Defects.
  3. Hearing Screen:
    Hearing screening can be done any time after a baby is about 12 hours old. There are two different ways that the hearing screen can be done. Both measure how well the baby responds to sound, and both are quick and painless. Most of the time, the hearing screen can even be done while the baby is sleeping.

Why is newborn screening important?

Newborn screening helps us find babies who have certain serious medical conditions so that they can begin treatment right away. In most cases, these babies look normal and healthy at birth. They usually do not begin showing symptoms until a few weeks or months later. Newborn screening helps to diagnose these babies before they start showing symptoms. By starting treatment early, serious problems like illness, intellectual disabilities, or death can often be prevented.

What happens if my baby does not pass their newborn screen?

It is important to remember that newborn screening is just a screening test. If your baby does not pass their newborn screen, or has an abnormal newborn screening result, it DOES NOT mean they have the condition. It just means that more testing must be done.

Newborn screening only finds babies who MIGHT have a condition. More testing will be done to figure out if these babies really have the condition.

What if I give birth at home or outside of a hospital?

You can still have the newborn screening test if you give birth at home or outside of a hospital. Talk to your midwife and your baby’s doctor about getting all three parts of the newborn screening test done. You can also call the newborn screening coordinator for your state. To find the contact information for your state’s newborn screening coordinator, go to: https://data.newsteps.org/newsteps-web/stateProfile/input.action)

Who decides which conditions should be screened for?

In 2003, the US Department of Health and Human Services created a group called the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. This group is made up of health care professionals, community advocacy groups, public health staff, and laboratory staff. The purpose of this group is to advise the US Secretary of Health about newborn screening.

One job of the Advisory Committee is to recommend conditions that should be included on newborn screening panels. The states then use these recommendations to decide which conditions to include on their state newborn screening panels. This recommended list of newborn screening conditions is called the Recommended Uniform Screening Panel (RUSP). To see the list of conditions included in the RUSP, go to: http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/recommendedpanel/index.html

What does my state screen for?

All babies born in the US get newborn screening. However, each state decides which conditions to screen for in babies born in their state. This is called the state’s newborn screening panel. To find out what conditions are on your state’s newborn screening panel, go to: http://www.babysfirsttest.org/newborn-screening/states

Where can I get more information?

Baby’s First Test is a family-friendly site with lots of information about newborn screening:
http://www.babysfirsttest.org/

The Save Babies Through Screening Foundation has great information about newborn screening:
http://www.savebabies.org/screenin
g.html