What Conditions are Screened For in Wisconsin?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Lysosomal Storage Disorders
Organic Acid Conditions
About Newborn Screening in Wisconsin
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 45 conditions including hearing loss and congenital critical heart conditions. We are currently conducting a Pompe disease newborn screening pilot project. 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 after the first 24 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 having a long, healthy life.
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
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. Their brochure can be viewed here.
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 specimens for the purpose of evaluation and quality assurance.
If you have questions about how your newborn’s information may be used during the year of storage, please contact the Newborn Screening Coordinator at (608) 890-1796.
Click here to see a copy of the blood spot card used in Wisconsin.