States Wisconsin

Conditions Screened

Wisconsin currently screens for 48 conditions

The Wisconsin Program

Each state runs its program differently, for more detailed information please visit their website here.

Download Brochure

Here are the brochures for the state of Wisconsin. Brochure »

What Conditions are Screened For in Wisconsin?

Hemoglobin Disorders

Lysosomal Storage Disorders

Contacts

Follow-Up Program

Mei Baker, MD, FACMG
Phone: 608-890-1796
[email protected]

NBS Laboratory

Mei Baker, MD, FACMG
465 Henry Mall
Madison, WI 53706
Phone: 608-890-1796
[email protected]

Early Hearing Detection and Intervention

Elizabeth Seeliger, Au.D.
Wisconsin Sound Beginnings
Program Director
Wisconsin Department of Health Services BCHP
1 West Wilson St
PO Box 2659
Madison, WI 53701-2659
Phone: 608-267-9191
Fax: 608-267-3824

Search Educational Resources

Looking for resources? Check out our Newborn Screening Education and Training Resource Center.

VIEW RESOURCES

About Newborn Screening in Wisconsin

Program Overview:

Wisconsin’s Newborn Screening Program strives to provide the best service possible for infants and their families. Newborn screening began in 1965 with testing for phenylketonuria (PKU), a rare genetic condition. Currently, the program screens for 50 conditions including hearing loss and congenital critical heart conditions. In addition to screening all newborns for these conditions, the program plays a crucial part in the care of infants who are diagnosed with these conditions. Newborn Screening has prevented death and disability for hundreds of Wisconsin citizens since its inception because these conditions can be successfully treated when detected early.

Before your baby leaves the hospital, 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. 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.

The newborn screen is most accurate if your baby’s blood is taken between the first 24-48 hours of his or her life. If your baby's newborn screening heelstick was done before 24 hours of age, your doctor may ask you to repeat the test. However, if your baby was born prematurely or needed special care after birth, the timing of repeat testing may be different. Your baby's doctor will receive a report with the test results. Before you leave the hospital, make sure your doctor has a current phone number or address so they can reach you if the test result is abnormal. If you do not have a phone, leave the number of a friend or relative who can find you.

Make sure to ask your baby's doctor about the results of your baby's newborn screen. You have the right to ask your doctor or nurse to explain the screening process and to provide the results to you. If your doctor contacts you, then it is very important that you follow your doctor’s instructions as soon as possible. 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. If your child is diagnosed with one of the screened conditions, the sooner your newborn begins treatment, the better their chance of optimal outcomes.

The Newborn Screening Program, administered by the Wisconsin Department of Health Services, has a Newborn Screening Advisory Group whose members include health care professionals, public health professionals, and most importantly, parents. This group's role is to help ensure that the program succeeds in screening, diagnosing, and treating all Wisconsin newborns for a variety of treatable conditions present at birth.

How is Newborn Screening Paid for in ­­Wisconsin?

The birthing hospital, or attendant for out-of-hospital births, in Wisconsin purchases the blood collection card from the Wisconsin State Laboratory of Hygiene. Typically, the hospital will charge the newborn’s insurance for the cost of the card. If the family is not insured or cannot afford the test, there is a fee-exempt option available. The current cost of the card is $109.  

Policies and Resources

Opt-Out:

All newborns must participate in newborn screening unless a parent or guardian objects because it conflicts with their religious beliefs or with their personal convictions. The person who administers screening must fully inform the parents of the purpose of the test and must provide the family with a reasonable opportunity to object. It is not recommended to opt out of this life-saving test.

Support for Families:

One of the concerns families may have when they hear that their child has a condition detected through newborn screening is the increased cost of health care. Fortunately, Wisconsin has various programs and laws that attempt to assist families who are caring for children with special health needs.

In Wisconsin, the Newborn Screening Program, which is part of the Wisconsin Department of Health Services, is required by law to provide special dietary treatment or formula that’s prescribed to Wisconsin children with certain conditions detected through newborn screening. The program will also provide follow-up counseling for the newborn and their family. These services are funded through the newborn screening fee. State medical assistance programs also provide nutritional supplements and replacement products for those with eligible conditions and financial status.

For families needing assistance navigating the various programs in Wisconsin which could help their child with special health needs, a 24-hour phone line called “First Step” is available to help. This free information and referral service to assist Wisconsin families and providers working with children and youth with special needs is available at 1-800-642-7837.

For mothers and children who are dealing with a condition detected by newborn screening, the Wisconsin Maternal And Child Health (MCH) Hotline at 1-800-722-2295 provides information and links to services and resources for women before, during, and after pregnancy and for children including children with special health care needs. The hotline also serves professionals who are seeking referrals for their clients.

Additionally, the Children and Youth with Special Health Care Needs Program in Wisconsin works to improve systems of care for anyone from birth through age 21 with a chronic physical, developmental, behavioral or emotional illness or condition. They have a wide knowledge of the many health-related programs and services for all children in Wisconsin including BadgerCare Plus, Healthy Start and Growth Smart, which include programs for newborn babies until their first year of life and another program for ages one to three.

Storage and Use of Dried Blood Spots:

After the newborn screening tests are complete, some blood will remain on the card. These “residual dried blood spots” will be kept in secured storage at the Wisconsin State Lab of Hygiene for one year. After that time, the blood sample is destroyed.

During the year of storage, Wisconsin takes the privacy of you and your newborn seriously. With the exception of the release of anonymous statistical data gathered from the residual dried blood spots, or as permissible under the state public health records statute, the department may not disclose information obtained from a newborn screening specimen or the parent or guardian of an infant. The state public health records statute holds records confidential and requires the parent to give informed consent for disclosure of their child’s information for anything other than the purpose of health care delivery and research that protects the identity of the patient.

The state newborn screening laboratory may conduct additional testing on specimens for the purpose of research on congenital or metabolic conditions, as long as any applicable human research subject laws and protections are followed. Human research subject’s protections typically include an informed consent process and the safeguarding of an individual’s rights. The laboratory also may test de-identified specimens for the purpose of screening assay development, quality control and quality improvement.

If you have questions about how your newborn’s information may be used during the year of storage, please contact the Newborn Screening Director at (608) 890-1796.

Click here to see a copy of the blood spot card used in Wisconsin.

Was this Helpful?

Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.

Was this page helpful?

Was this Helpful? - Feedback

Your input helps us improve the site for parents and practitioners. Leave us feedback about this page.

We're sorry to hear that. How can we do to improve it?

CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.