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.

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

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

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.

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.

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.

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.

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.

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.