Updated at 12:50 p.m., Friday, August 31, 2007
Cystic fibrosis added to state's newborn screening list
Advertiser StaffStarting tomorrow babies born in Hawai'i will be tested for cystic fibrosis as part of mandated screening for newborns.
The decision to add cystic fibrosis to the state's screening list was based on recommendations by the Hawai'i Newborn Screening Cystic Fibrosis Task Force and agreement from the larger Hawai'i Newborn Screening Advisory Committee, according to a news release issued today by the state Department of Health.
With the addition of cystic fibrosis, Hawai'i will screen for 32 metabolic disorders and hearing loss.
This testing panel exceeds the March of Dimes and American College of Medical Genetics national newborn screening recommendations for a minimal panel.
Cystic fibrosis occurs once in every 3,700 births in the United States and is one of the most common inherited disorders among Caucasians. In Hawai'i, cystic fibrosis is common in families of mixed ethnicity. With Hawai'i's diverse ethnic population, approximately 2-3 infants out of 20,000 births each year will have cystic fibrosis.
Cystic fibrosis is a severe multi-organ inherited disease, primarily affecting the lungs and pancreas. Cystic fibrosis causes thick, sticky mucus to build up in the lungs, increasing the risk of lung infections and making breathing difficult. Digesting food is also difficult without the aid of prescription enzymes. Death from severe lung infections and respiratory failure may occur.
The Cystic Fibrosis Foundation states that drug treatments, therapies, and good nutrition can lengthen and improve life for a person with cystic fibrosis. The average age of cystic fibrosis diagnosis in the U.S. is 14 months. With newborn screening, the diagnosis can be made as early as 2-4 weeks so that treatment can be started earlier to improve health status in children with cystic fibrosis.
Testing for cystic fibrosis will not involve any additional blood samples from the newborn. The medical staff at the baby's birthing facility will draw a small blood sample, usually from the baby's heel, within the first 1-2 days after birth. The drops of blood are collected on a special filter paper form and sent to the state contracted laboratory for initial testing of 32 disorders, including cystic fibrosis. If the initial screening comes back positive for an enzyme that is elevated in newborns with cystic fibrosis, a second blood sample will be collected and tested. If the second test comes back positive, the baby has a higher risk of having cystic fibrosis, and will need further testing to confirm the diagnosis of cystic fibrosis.
More information about newborn screening tests in Hawai'i can be found at www.hawaiigenetics.org