Starting this week, babies born in North Carolina are being screened for cystic fibrosis (CF) when their tiny blood samples are sent to the North Carolina State Laboratory of Public Health to test for possible metabolic and genetic disorders.
Newborns are already screened for more than 30 disorders by the State Laboratory of Public Health. The whole panel of tests requires just a few drops of blood from a small “heel stick,” or prick, before each baby leaves the hospital. The new test will not require any additional drops of blood.
North Carolina joins a growing number of states currently screening newborns for CF in an effort to improve the quality of life for affected individuals. The addition of this common genetic disorder to the current panel of North Carolina tests was approved by the state legislature in 2008.
The Newborn Screening Program is critical to the early detection and treatment of the disease in newborn babies,” said Dr. Jeffrey Engel, state health director. “Detection can mean the difference between life and death – or disability and healthy development – for many babies born in North Carolina each year,” he said.
“Adding cystic fibrosis to newborn screening means that even more babies will have a chance at a healthier life, “Engel said. ”North Carolina has an outstanding network of CF providers to which we can refer these infants for specialty care and interpretation of tests.”
The State Lab will work closely with personnel in the Children and Youth Branch, N.C. Division of Public Health, to ensure all babies with abnormal CF newborn screening results receive appropriate follow-up and referrals.
“By screening for cystic fibrosis, North Carolina is making marked progress in identifying this treatable condition. That will result in improved health status, as well as cost savings for families and the overall health care system,” said March of Dimes public affairs co-chairs Craig Umstead and Tracy Greenwood. “The March of Dimes commends our lawmakers and the Division of Public Health.” With chapters nationwide, the March of Dimes is the country’s leading nonprofit organization for pregnancy and baby health.
Cystic fibrosis is the most common genetic disease among Caucasian babies, with an incidence of 1 in 2,500 live births. The disease also occurs in 1 in 6,000 Hispanic births, 1 in 10,000 African-American births, and 1 in 90,000 Asian-American births. Eighty-five percent of babies with CF do not show symptoms at birth, so without newborn screening, most would not be diagnosed until after 1 year of age.
The most serious complications of CF occur in the lungs. Thick, accumulated mucous causes frequent lung infections and blockages of the airway, often causing permanent lung damage. CF can also obstruct the pancreas and severely limit the organ’s ability to break down food and absorb nutrients. As a result, a child with CF may have poor growth, weight loss, abdominal pain and other problems. These symptoms can be greatly improved through the replacement of pancreatic enzymes and careful diet planning.
Since newborn screening for CF allows for early diagnosis and therapy intervention, the addition of CF to the state’s newborn screening panel will further improve the lives of North Carolinians with cystic fibrosis. Studies have shown that patients diagnosed soon after birth have improved nutritional status, growth and lung function and experience fewer hospital stays, resulting in longer, healthier lives. In 1955, children with CF were not expected to live beyond age 6. Today, adults with this disease are living into their forties and have lives that include careers, marriage and families of their own.