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CF Testing for Newborns WHAT EXACTLY IS CYSTIC FIBROSIS? 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 MY BABY TESTED POSITIVE FOR CF. NOW WHAT? Most babies with a positive newborn screen for cystic fibrosis will not have the disease. However, additional testing and consultation with a CF specialist is needed. A diagnostic procedure called a “sweat test” will determine if an infant has cystic fibrosis. WHAT IS A SWEAT TEST? The sweat test measures the amount of salt that is in a baby’s sweat. People with CF have higher amounts of salt in their sweat. While the sweat test is very reliable, sometimes it has to be repeated. WHAT HAPPENS DURING A SWEAT TEST? The sweat test takes about an hour. It is painless. Before the test, a technician will place a liquid chemical on a small part of the arm or leg. This will make the skin sweat. Then, an electrode is attached to gently stimulate the sweat glands to make sweat. The sweat is then collected with special gauze paper or a coil tube and analyzed in the lab. Preliminary results may be available soon after the test is done. Final results will come back later in the day. All tests are reviewed by a CF specialist. WHAT HAPPENS AFTER THE SWEAT TEST? A genetic counselor reviews sweat test results with the parents of a newborn being tested. Parents will also have the option of meeting with a physician specializing in cystic fibrosis care within 24 hours to discuss any medical issues. WHERE CAN I GET THE SWEAT TEST DONE? It is strongly recommended that CF specialists with extensive expertise in sweat testing arrange for the procedure. The Cystic Fibrosis Center of Chicago utilizes several hospitals who follow strict guidelines on how to perform sweat tests. St. Alexius Medical Center, Evanston Hospital, and several other hospitals in the Chicagoland area can perform this test. In addition to the sweat test, The Cystic Fibrosis Center of Chicago strongly suggests that you meet with a genetic counselor and if needed, a physician who specializes in CF. 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 carriers 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. |
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Read about our educational programs. |
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© 2009
The CF Center of Chicago |
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