My Baby Failed the Cystic Fibrosis Newborn Screen- What Should I Do?
If your State does not do a repeat screen, this would be the first thing to do, as sometimes these are false positive results and your baby may not have cystic fibrosis (CF). If you need help getting this done, contact your pediatrician or University Hospital or Children’s Hospital as they are likely the place where a sweat chloride test can be done. The sweat chloride test needs to be ordered by your baby’s doctor. The sweat chloride test can be done at any age. Infants may not sweat enough and the test may then need to be repeated. For infants under 6 months of age, sweat chloride of <29 makes CF very unlikely, 30-59 CF is possible and >60 CF is likely. For people over 6 months of age, sweat chloride <39 makes CF unlikely and over 60 CF is likely.
If my child has CF, what are the main issues to be concerned about?
1. Avoid infections. Stay away from sick people, practice good hand-washing, avoid obvious germs, and get the flu shot in the fall. When sick, especially if coughing (possible lung infection), see your doctor.
2. With CF, the main problem is lack of digestive enzymes so food is not well absorbed. Your CF specialist will order enzymes to take with meals and snacks. Eat well and enough, and supplement vitamins and nutrients.
For more information visit the CF foundation here…