Newborns to be tested for Cystic Fibrosis

Typically, Cystic Fibrosis isn't diagnosed until a child starts to show symptoms. However, with newborn testing, more could be done to treat the disease early– before it becomes life threatening.

Posted 9:24 p.m. Apr 22, 2009 — Updated 12:27 a.m. Apr 23, 2009

RALEIGH, N.C. — North Carolina has joined 46 states in adding Cystic Fibrosis testing for all newborns. Typically, the inherited, chronic disease isn't diagnosed until a child starts to show symptoms. However, with newborn testing, more could be done to treat the disease early – before it becomes life threatening.

For many new parents, like Thomas and Jocelyn Matthews, thinking that their newborn could develop a potentially life-threatening disease is the furthest thing from their mind.

"When you have a baby, it's supposed to be perfect,” Jocelyn Matthews said.

Cystic Fibrosis primarily affects the lungs and the digestive system. The child develops persistent coughing, wheezing and shortness of breath, and then frequent lung infections.

The disease also affects the digestive system, even though the child may have a healthy appetite.

“What happens is that the meal goes undigested, unabsorbed,” said Dr. Jeffrey Engel, state health director.

Cystic Fibrosis affects 30,000 children and adults in the United States. In North Carolina, samples taken from newborns are sent to the state lab for DNA testing. Parents can then learn right away if their child has a genetic marker for Cystic Fibrosis.

“Rather than waiting for them to get sick, we hope to keep them in better health for longer periods of time,” Engel said.

Since Cystic Fibrosis isn't part of Jessica and Andrew Harrison's family history, they expect their daughter will test negative for the disease.

It is "one more thing to check off the list and not be worried about. Because in this big wide-world, there are so many things,” Jessica Harrison said about the Cystic Fibrosis test.

If a child does test positive for Cystic Fibrosis, doctors can then keep a close watch for symptoms and treat those early.

There are effective interventions and treatments that can help people with Cystic Fibrosis live productive lives well into their 30's, 40's and beyond.

If a child is identified as a genetic carrier for Cystic Fibrosis, the family may also be offered genetic counseling to see what that means for the child.

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