Office of Newborn Screening

Information for Parents

Note: Because some disorders can cause problems early in life, it is important for the contact information to be correct on the newborn screening card so that a family can be notified quickly if there is an abnormal result.

The Newborn Screening Story: How One Simple Test Changed Lives, Science and Health in America, published by the Association of Public Health Laboratories (APHL), covers the origins, science, importance and future of Newborn Screening.

With the right information, you can provide the best start for your baby's health. Did you know that over 90,000 babies are born in Arizona each year? Most of them are healthy but some have a rare and serious disease or hearing loss. Testing and early detection of these disorders is important for all babies. Early treatment can prevent or minimize serious symptoms like growth problems, brain damage and even death.

Bloodspot/Heel Stick Screening | Hearing Screening | Disorder Information | Frequently Asked Questions (FAQs) | Emergency Preparedness

FAQs

As a new parent, many questions are going to arise about the screening done shortly after the birth of your baby. Please find answers on the information you need to know about blood and hearing testing, notification, and follow-up. If you have additional questions, please contact us.

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Click on the questions below to see their answers.

Who is tested?

Babies born in Arizona have a few drops of blood taken from their heels to test for certain medical disorders. The blood is put on a special filter paper and then allowed to dry before being sent quickly to the State Lab. Babies also have their hearing tested before they leave the hospital.

Why are babies tested?

The blood tests could save your baby's life. Most babies are healthy when they are born. A few babies look healthy but have a rare health problem. Early treatment may keep your baby from getting sicker. Finding hearing loss will help your child learn speech and language.

When are babies tested?

The hospital will do the first blood spot test when your baby is between 24 and 48 hours of age and the hearing test sometime before discharge. Your baby's doctor will order the second blood spot test at your first visit.

What disorders are babies tested for?

Babies are tested for 29 core disorders including hearing loss on the Recommended Uniform Screening Panel from the U.S. Department of Health and Human Services (HHS).

For a brief description of the disorders, visit our Disorder Information page.

Our baby is healthy and we have no family history of these disorders. Is screening really necessary?

Parents who have no family history of these disorders and who may already have had healthy children can still have a child with a disorder. Most of the babies with disorders come from families with no previous family history. Without screening there is no way to predict which baby might be affected.

What are the benefits of newborn screening?

Newborn screening can identify a baby with a disorder.

Three of the most common disorders (hearing loss, hypothyroidism and PKU) do not show specific symptoms that would alert a doctor to a problem before more permanent impairments have occured.

Although disorders detected by Newborn Screening are rare, the chance of a baby with one of the disorders is greater than one in a thousand. Finding these babies before permanent damage is done gives them a chance of a good life. For the majority of babies whose tests are normal, testing provides peace of mind to parents.

How will I know the results of the test?

  • Bloodspot Results
    Ask your baby's doctor for the results of both the first and second tests. Give the hospital and the baby's doctor your correct address and phone number.
  • Hearing Results
    The hospital will write the results on the back of the immunization record. Bring the blue shot card to your baby's doctor.

My doctor asked for another sample because the previous sample was unsatisfactory. What does that mean?

That means that the previous sample could not be tested because of problems with the sample such as too little blood collected, contaminated or damaged sample, etc. No results could be reported so it is as if your baby had not been screened. Get another sample drawn as soon as possible and ask your doctor for the results.

What if my baby's results are normal?

That means that you baby probably does not have any of the disorders that we screen for. There is a very slim chance that the screening test did not detect a disorder that your baby has. Doctors know that there is a possibility of a false negative result and they will consider the possibility if symptoms show up later.

What if my baby's results are abnormal?

  • Bloodspot Results
    You will get a call from your baby's doctor asking you to get more testing done immediately. Your baby has a higher risk of having a disorder but further testing is necessary to diagnose or rule out a disorder.

    An abnormal second blood spot or hearing test may not mean you baby has a problem. Your baby may be referred to a specialist for diagnostic testing and treatment. If needed, the Office of Newborn Screening will help you get special services for your baby.
  • Hearing Results
    The hospital hearing screener will record your baby's results on the back of the immunization card and will arrange for an appointment for your baby to be rescreened. If your baby doesn't pass that screening, you will be referred to an audiologist for a diagnostic test. If you don't bring your baby back for the rescreening appointment, the Newborn Hearing Screening Program will contact you and your baby's doctor to encourage you to get your baby retested. If a hearing loss is found, your baby will be referred for appropriate intervention.

How common are the disorders on the screening panel?

In Arizona, we find over 200 babies with treatable disorders or some degree of hearing loss each year.

Does the hearing test hurt my baby?

No. The test is done when the baby is quiet or asleep. Earpieces are placed in the baby's ears and electrode pads may be placed on the baby's head but these do not hurt the baby in any way.

We have adopted a baby. Can we have a newborn screening test for the baby?

Yes, if the baby is still under a year of age. Providers are required to order tests for babies under a year of age who come into their care.

What happens to the blood sample after testing is done?

Specimens are stored for approximately 3 months and then are destroyed and discarded. Sometimes the leftover blood is used for testing or validating new laboratory methods for newborn screening.

As a parent, may I refuse to have the NBS test done?

Yes, but you will be required to assume responsibility for any adverse consequences for failing to have your baby screened. These are the irreversible results of not finding and treating a disorder promptly and can include mental retardation, developmental delay, seizures, coma and death. Your refusal will be documented in your baby's medical record.

Do parents pay for newborn screening?

The cost of the first newborn screening test is included in most hospitals birth packages and is billed to insurance providers along with the other charges associated with the birth.

Second screens are billed directly to insurance companies or to the responsible party (parent) if the baby is not covered by insurance. The fee for analysis of a second screen is $65.00, payable to the ADHS, plus whatever charge for specimen collection is billed by the collection laboratory.

Where can I get more information about newborn screening?