Cystic Fibrosis Center

Newborn Screening for Cystic Fibrosis (CF)

We serve as a designated follow-up treatment center for the New York State Newborn Screening Program providing:

About Screening

Before your newborn baby came home from the hospital, a small amount of blood was taken from his or her foot for New York State's Newborn Screening Program. Your hospital may have given you a pamphlet, "For Your Baby's Health" that describes the diseases screened for by this program, which include cystic fibrosis. You may also have a pink form with your baby's ID number on it. Babies are screened to ensure that they receive timely referral and treatment. If you didn't receive the pamphlet, you can order it from the New York State Department of Health.

What Happens If My Baby Had a Positive Cystic Fibrosis Newborn Screening Result?

Babies who have one mutation identified or whose immunoreactive trypsin is in the 0.2% of results without identifiable mutations are called screen positive. Since we serve as a designated follow-up treatment center for the New York State Newborn Screening Program, these babies are referred to us for sweat testing and genetic counseling and consultation. The sweat test measures how much salt is in your baby's sweat and is the best way of checking for CF. Keep in mind that most babies who get a sweat test do not have CF, but it's important to "rule it out."

What Happens if Newborn Screening Identifies My Baby as a Cystic Fibrosis Carrier?

A positive CF carrier test result means that your baby has inherited an abnormal gene from either you or your partner and is a CF carrier. A carrier has no signs of CF and will never develop the disease.

Whenever a carrier has a baby, there's a chance the abnormal gene will be passed on. This can occur for generations without any baby being born with CF. However, if two CF carriers (or a carrier and a person with CF) have a baby, there is a one in four chance that the baby could be born with CF (he or she would get an abnormal gene from both parents). There are implications for both you and your child:

  • You and your partner may want to undergo CF carrier testing. If you both turn out to be CF carriers, genetic counseling could help you understand your risk of having a child with CF in the future.
  • Your child may want to do the same when he or she grows up and is ready to have a child of his or her own.

Connect with Golisano Children's Hospital

Golisano Children's Hospital Development

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a chronic condition in children and adults. It most often affects the lungs and digestive system of the body. Children with CF may have chronic lung infections and/or poor digestion of their food. Symptoms which are sometimes seen in CF but are also common in other illnesses may include:

  • A chronic cough
  • Frequent infections in the lungs
  • Wheezing/asthma
  • Nasal polyps
  • Difficulty gaining weight
  • Salty taste of the skin