Newborn Screening

Frequently Asked Questions (FAQs)

 

What is newborn screening?

Newborn screening finds babies who may have a hidden disorder or condition that needs early treatment. In Wisconsin, newborn screening has two components:

  • A special blood test — Just a few drops of blood from your baby’s heel are put onto a special test paper and sent to the Wisconsin State Lab of Hygiene to be tested.
  • Point-of-care testing — Babies are screened for hearing loss and critical congenital heart disease (CCHD) at the hospital before being discharged (or at home for home births).
What are “hidden” disorders or conditions?

Hidden disorders or conditions are health problems that are difficult or impossible for you or your baby’s doctor to find just by looking at your baby. If not treated, these disorders or conditions can lead to developmental delays, slow growth, severe illness, brain damage, or possibly death. Early treatment can help prevent some of these serious health problems.

Why is newborn blood screening so important?

Newborn blood screening can save babies’ lives and help them begin life healthy. When newborn blood screening finds a disorder, the baby can receive treatment right away to prevent health problems and even death. Affected babies may look perfectly normal at birth. Unless newborn blood screening is done, the disorder may stay hidden and cause permanent damage to the baby. In Wisconsin, newborn blood screening is required by law in order to protect the health of babies. All babies should be screened between 24-48 hours after birth.

Can I say “no” to the test?

Having your baby tested for these very serious conditions is important to the health of your baby. As a parent, you may refuse newborn blood screening for your baby only if your religious beliefs and practices or personal convictions do not agree with this testing.

Is the test safe?

The test is simple and safe. Some babies cry when their heel is pricked, but the discomfort lasts only a short time. There is a small risk of infection when the heel is pricked. This risk is very low.

How will I know the results of my baby’s screening test?

Your baby’s doctor will receive a report with the test results. Ask about these results when you take your baby in for a regular check-up.

What if my baby’s test is abnormal?

If the test is abnormal, you will be contacted within a few days after you leave the hospital. If your baby’s newborn screening result is abnormal, your doctor will talk with you about the next steps to take. An abnormal newborn screening result does not mean that your baby has a disorder. This is a screening test that finds babies who may be at risk for a disorder. Further testing must be done to find out if your baby has a disorder and needs treatment.

Why do some babies need to be retested?

There are two main reasons why a repeat screening test may be needed:

  1. There was a problem with the way the first blood sample was collected; OR
  2. The test result was abnormal.

To repeat the newborn screening test, a new blood sample is needed from your baby. The newborn screening test is most accurate if your baby’s blood is taken after the first 24 hours of life. If your baby’s blood was collected before 24 hours of age, your doctor may ask you to repeat the test when your baby is 1 to 2 weeks old.

How can I help my baby?
  • Make sure your baby is tested before you leave the hospital.
  • Leave your correct address and phone number with the birth hospital and your baby’s doctor. If you do not have a phone, leave the number of a friend or relative who can find you.
  • If your baby’s doctor asks you to bring your baby back to repeat the newborn screening test or for further testing, do so as soon as possible. It is important that testing be done right away.
How are the disorders treated?

Each disorder is different. Some are treated with a special diet and others with medicine. If treated early, many babies grow up to lead a normal, healthy life. In a few cases, the disorders may not be completely treatable. Early diagnosis and treatment will allow your baby the best chance of normal growth and development.

How much does the newborn screening test cost?

The cost of the screening test is usually covered by health insurance. Diagnostic testing, if needed, will involve additional costs. To learn the current cost of the newborn screening test, contact the Newborn Screening Coordinator at 608-266-8904.

What will be done with my baby’s blood sample after all testing is completed?

Newborn screening samples are kept in secured storage at the Wisconsin State Lab of Hygiene for one year. After that time, the blood sample is destroyed.

How is the screening for hearing loss done?

Hospitals and midwives have fast, accurate and gentle methods available to screen your baby’s hearing soon after birth. The earlier hearing loss is discovered the better a baby’s chance to learn to communicate, bond with caregivers and achieve early learning. Families and healthcare providers should discuss the results of the hearing screening together. If your baby does not pass the initial screening, your baby will need more testing. Follow-up is critical. Don’t delay.

How is the screening for critical congenital heart disease (CCHD) done?

Hospitals and midwives use a machine called a pulse oximeter to measure the blood oxygen concentration in the baby’s right hand and either foot. Some babies with a serious heart defect look well for the first few days, but will have blood oxygen levels that are below normal. Without timely diagnosis and treatment many of these babies will become very sick or die in the first week of life.  A low oxygen level may also be the first sign of a serious infection or lung disease. Babies with an abnormally low oxygen saturation in their blood will need further testing for critical congenital heart disease or other problems which can cause low oxygen saturations.