States Illinois

Conditions Screened

Illinois currently screens for 57 conditions

The Illinois Program

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

Download Brochure

Here is a brochure for the state of Illinois. Brochure »

What Conditions are Screened For in Illinois?

Hemoglobin Disorders

Lysosomal Storage Disorders

Contacts

Illinois Department of Public Health Genetics and Newborn Screening Program

535 W. Jefferson Street, Second Floor
Springfield, IL 62761
Phone: (217) 785-8101
http://dph.illinois.gov/topics-services/life-stages-populations/newborn-screening
Email: [email protected]

Crystal Jordan, Chief
Health Assessment and Screening Section
Illinois Department of Public Health
535 W. Jefferson Street, 2nd Floor
Springfield, IL 62761

Phone: 217-524-4900
Fax: 217-557-5396

Newborn Screening Laboratory Contact

Tate Kappell, Chief
Newborn Screening Laboratory Section
Illinois Department of Public Health
Chicago Laboratories
2121 W Taylor St
Chicago IL 60612
Phone: 312-793-7640
Fax: 312-793-0072

Early Hearing Detection and Intervention

Ginger Mullin, Coordinator
Illinois Department of Public Health
535 W. Jefferson Street, 2nd Floor
Springfield, IL 62761
Phone: 217-785-1053
Fax: 217-557-5324

Esha Phatak
Illinois Newborn Hearing Program
UIC Division of Specialized Care for Children
3135 Old Jacksonville Road
Springfield, IL 62704-6488
Phone: 217-558-2350
Phone: 800-322-3722
Fax: 217-558-0773
Website: https://dscc.uic.edu/ 

Search Educational Resources

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

VIEW RESOURCES

About Newborn Screening in Illinois

Program Overview:

While most babies born in the United States are healthy, there are some babies who seem fine at birth but have a serious condition without obvious symptoms. Early detection and treatment may prevent some problems, such as illness, intellectual disability, poor growth or death. That is why every baby needs newborn screening.

Newborn screening has three parts: the blood spot (or heel stick), the hearing screen, and pulse oximetry for heart conditions. An out of range (also called positive) newborn screening result means that your baby may be at risk for one of these disorders. More testing is needed to know if your baby is affected. Work with your baby’s healthcare provider to plan follow-up.

Tips: 

  • Ask your baby’s health care provider about newborn screening results.
  • Before you leave the hospital, make sure to give them an up-to-date phone number or address so they can find you with any follow-up instructions.
  • If you and your baby go home before 24 hours, talk to your baby’s health care provider to plan newborn screening. 
  • Home births - Work with you and your baby’s healthcare providers to make plans for your baby’s newborn screen.
How is Newborn Screening Paid for in Illinois?

The NBS fee is $128.00 per screen, which covers testing and follow-up. The fee also covers the cost of metabolic formula. The Illinois Department of Public Health bills birthing hospitals or other entities that submit a sample for newborn screening. The Department does not bill private insurance or Medicaid. In the case of home births, or other out of hospital births, the state newborn screening program does bill parents directly. Then the screen is usually paid for out of pocket.

Policies and Resources

Opt-Out:

In Illinois, newborn screening is mandated by law. The only allowable exemption is on religious grounds. If a parent objects because newborn screening conflicts with their religious beliefs, the objection must be presented in writing.

Support for families:

Many families worry about higher health care costs related to follow-up testing and treatment of an affected child. Most affected babies will need lifelong medical management. The Illinois Department of Public Health provides some services to help lessen the financial burden. The Department will provide medically necessary metabolic formula free of charge if it is not available through other state agencies. Contact the Department for more information.

The Division of Specialized Care for Children (DSCC) provides ongoing care coordination for children with eligible conditions. Limited financial aid may be available. Contact DSCC for more information.

Storage and Use of Dried Blood Spots:

Every blood spot specimen is saved by the Department of Public Health for a minimum of two months. Specimens with an out-of-range result are saved for a maximum of six years. Specimens may be sent to another clinical lab for supplemental screening, if needed. Specimens are destroyed after the maximum time period has passed.

To see a copy of the single page blood spot card used in Illinois, click here. To see a copy of the multi page blood spot card used in Illinois, click here.

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