10

Things parents
need to know

About Newborn Screening

1.

Newborn screening
saves lives.

Newborn Bloodspot Screening is a simple blood test that identifies nearly 50 disorders that could cause serious illness, disability or death to a baby if not found early through screening. For a complete listing of the disorders, visit the website below.
2.

Testing is required.

Every baby born in North Dakota is required by state law to have a newborn blood spot screening test, but parents may refuse the testing.
3.

Babies with disorders
may look healthy
at birth.

You may not be able to tell your baby has a disorder just by looking at them.
4.

These disorders are not very common.

These disorders are rare and don’t happen very often.
5.

These disorders can
happen in families with
no history of diseases.

Sometimes these disorders can show up in families who have never had a family member with the disease or they may not know about a distant relative who had a disorder.
6.

Treatment is available
for ALL the disorders
screened for.

Treatment is available for all the disorders screened and most babies who are identified early can grow up to be healthy. Some treatments may be lifelong.
7.

Just a few drops

To do the test, the health care provider will take a few drops of blood from the baby’s heel, which is called the heel stick and the specimen is sent to a state laboratory for testing. For this test, your baby will not be given any medicine and most babies feel a brief discomfort from the heel stick, but it heals quickly and leaves no scar.
8.

Discuss results with your
local care provider.

The test results will be sent to your health care provider and they will notify you when they are available, typically within one week. If the results detect your baby may have a life threatening disorder – you will be contacted as soon as the testing is complete, usually within a few days after the heel stick is done.
9.

Retesting.

Some babies may need more testing. If your baby needs more testing, you will be notified by your health care provider. It is important for your baby to get the tests done quickly to ensure your baby stays healthy. This does not mean that your baby has a disorder. It just means that something was abnormal on the test, so a follow up test is needed.
10.

Storage.

Once testing is completed, the dried blood spot cards are stored in a secure location in North Dakota until your child reaches 18 years old. If there are concerns about storage, you may request to have your baby’s card returned to you. Contact the program for more information.

The ND Newborn Screening Program

Newborn screening involves lab testing of all newborn infants for certain genetic/metabolic disorders of body chemistry. The tests are considered 'screening tests' only. Screening can indicate the possibility that an infant may be at risk for a disorder included in the testing panel. Additional diagnostic tests are necessary to determine if the infant with an abnormal test actually has a disorder. Early treatment can prevent major complications.

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