Cystic Fibrosis Screening and Prevention In Northfield, IL
On January 28, 2008, Illinois began mandatory screening of all newborns for cystic fibrosis (CF). In conjunction with this legislative breakthrough, the Cystic Fibrosis Center of Chicago initiated its Cystic Fibrosis Newborn Screening Program and Hotline.
As a state appointed CF expert, Steven Boas, MD and his staff at the Cystic Fibrosis Center of Chicago developed this program in order to provide the most immediate, comprehensive, and convenient consultation services for patients with positive newborn screens.
Our premier Cystic Fibrosis Illinois Newborn Screening Program includes:
A 24/7 Cystic Fibrosis Newborn Screening Hotline (866) 269-1105 to guide pediatricians and families through the Illinois Cystic Fibrosis Newborn Screening Process and answer any questions. The hotline offers:
- Immediate and around-the-clock access to certified Illinois Newborn Screening Program experts
- Expert guidance for referring physicians and families in navigating the Illinois Newborn Screening Program for cystic fibrosis
- A one-stop place for scheduling appropriate testing for babies with positive cystic fibrosis newborn screening
- Around-the-clock access to a state-designated CF expert
We offer quick access to sweat chloride testing at multiple locations, including St. Alexius Medical Center in Hoffman Estates and Evanston Hospital in Evanston.
Our program includes immediate processing of sweat chloride testing so that families can have results and essential genetic counseling services in a single visit.
While the sweat test is in process, families can meet with a genetic counselor to learn about the screening and testing process.
Infants who are confirmed to have CF by either genetic analysis or by a positive sweat test are seen immediately by state-designated CF specialist and director of the Cystic Fibrosis Center of Chicago, Dr. Steven Boas for additional counseling services and initiation of appropriate care.
FAQs about CF Newborn Screening
Newborn screening for cystic fibrosis is done in the hospital within the first few days after birth. All 50 states and the District of Columbia screen newborns to help identify babies who might have cystic fibrosis. Most babies with positive newborn screening tests do not have CF. Babies who are found to have CF early can be treated early.
The Illinois Newborn Screening Program for Cystic Fibrosis is complicated. Contact the 24/7 Newborn Screening Hotline at (866) 269-1105 for help in navigating your child’s individual results. In most cases, a positive Illinois Newborn Screening for cystic fibrosis means that your baby will need a special test called a sweat test.
Call the 24/7 Newborn Screening Hotline at (866) 269-1105 to schedule a sweat test. This testing will be done at a specialized lab with staff members who know how to do testing on young babies and have appropriate genetic counseling services available.
Either St. Alexius Medical Center in Hoffman Estates or Evanston Hospital in Evanston can be utilized based on convenience for the family. On the day of the sweat test, you will also meet with a genetic counselor to discuss your baby’s CF newborn screening and answer any questions.
Yes. Any baby whose newborn screening result is positive for CF should have a sweat test. Having a negative CF blood test done does not rule out CF.
The sweat test is simple and should not hurt your baby. If you yourself were to have a sweat test, your skin might feel warm and tingly for about five minutes during the test.
Before the test, the technician will apply a chemical that causes sweating to a small area on your baby’s arm or leg. Then, a tiny electrode is attached and the area is stimulated to cause sweating. Your baby’s sweat is collected in a plastic coil. The collected sweat is sent to the CF lab and tested. It takes about one hour from start to finish.
Do not use any lotions or creams on your baby’s arms or legs on the day of the test. Any regular medications may be continued and will have no effect on the test results. Make sure your baby is well fed and hydrated on the day of the test. Furthermore, because hospital rooms may be chilly, bring an extra blanket or sweater and hat to keep your baby warm during the test. Remember – they will need to sweat!
The genetic counselor will explain the results of the test on the day of the sweat test and you will have an opportunity to ask questions.
Most of the time the results of your baby’s sweat test will clearly tell you if your baby has CF or not. Sometimes, the sweat test will have to be repeated. Call the 24/7 hotline at (866) 269-1105 for help in navigating and interpreting what your child’s test means.
If the sweat test is positive, your child has CF. Additional testing will need to be performed including blood sampling to determine which gene caused the CF. This test is important and may help determine how severe the disease will be.
It will also be helpful to test siblings and parents for counseling purposes. The Cystic Fibrosis Center of Chicago is available 7 days a week to meet with you upon diagnosis. We will discuss treatments and help initiate a medical care plan.
A positive CF newborn screen may reflect no CF, the carrier state, or having CF. Careful interpretation of the screen and sweat test results by a genetic counselor or CF physician will be needed.
Carrier testing and a thorough history will be needed to answer any questions. A genetic counselor will discuss carrier testing for parents and other family members. This carrier testing will help determine if one or both parents are carriers for CF. If both parents are carriers for CF:
- There is a 1 in 4 (25%) chance your child will have cystic fibrosis.
- There is a 2 in 4 (50%) chance your child will be a carrier.
- There is a 1 in 4 (25%) chance your child will not have cystic fibrosis and will not be a carrier.
If you have any additional questions about your baby’s newborn screening test, the Illinois Newborn Screen Program, or cystic fibrosis, call our 24/7 hotline at (866) 269-1105.