WHAT EXACTLY IS CYSTIC FIBORIS?
Cystic Fibrosis is a disease that causes the body to make mucus that is thicker and stickier than normal. The mucus causes problems with the lungs and the digestive system including:
- Lung infections
- Breathing difficulty
- Problems digesting fat and proteins
- Poor nutrition and growth
WHAT IS CF NEWBORN SCREENING?
CF newborn screening tests help to 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.
WHAT DOES MY BABY’S ABNORMAL CF NEWBORN SCREEN MEAN?
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.
WHERE DO I GET A SWEAT TEST FOR MY BABY?
Call the 24/7 Newborn Screening Hotline at 866-269-1105 to set up sweat testing. 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.
I HAD A NEGATIVE CF BLOOD TEST WHEN I WAS PREGNANT. DOES MY BABY STILL NEED A SWEAT TEST?
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.
HOW IS THE SWEAT TEST DONE?
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 I NEED TO DO ANYTHING TO PREPARE MY BABY FOR THE SWEAT TEST?
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!
HOW WILL I KNOW THE RESULTS OF THE SWEAT TEST?
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.
WHEN I HAVE THE RESULTS OF THE SWEAT TEST, WILL I KNOW IF MY BABY HAS CF?
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.
WHAT HAPPENS IF MY CHILD HAS CYSTIC FIBROSIS?
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 for testing of siblings and parents for counseling purposes. The Cystic Fibrosis Center of Chicago will be available 7 days a week to meet with you upon diagnosis. We will discuss treatments and help initiate a medical care plan.
WHAT HAPPENS IF MY CHILD IS A CARRIER?
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 carrier for CF:
- There is a 1 in 4 (25%) chance their child will have cystic fibrosis.
- There is a 2 in 4 (50%) chance their child will be a carrier.
- There is a 1 in 4 (25%) chance their child will not have cystic fibrosis and will not be a carrier.
QUESTIONS AND INFORMATION
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.