New screening test for CCHD
Dr. Jennifer L. Howse, president of the March of Dimes, today issued the following statement on adding a new screening test for newborns to the Secretary of Health and Human Services’ Recommended Uniform Screening Panel:
“Today, based on the recommendation of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, and the approval of Secretary Kathleen Sebelius, the March of Dimes will add critical congenital heart disease (CCHD) to the list of newborn screening tests we recommend, for a total of 31 conditions.
“The Secretary’s acceptance of the CCHD test is good news for babies and families. The March of Dimes is the only consumer group in the country with a recommended list of newborn screening tests. We will work with every state and the District of Columbia to ensure this test is given to every child at birth.
“Heart defects are the most common birth defects in the United States, and about 4,800 (or 11.6 per 10,000) babies born every year have the life-threatening heart conditions known collectively as CCHD. Routine pulse oximetry to measure oxygen levels can successfully identify newborns with CCHD before the babies die suddenly or even begin to show symptoms. Early detection will give doctors the chance to intervene and save babies’ lives. We urge every state to educate parents prospectively about the benefits and availability of newborn screening.
“The March of Dimes is the leader in advocacy for comprehensive newborn screening for all babies in the United States, regardless of where they are born. Our policy is to support screening for specific conditions when there is a documented medical benefit to the affected infant from early detection and treatment; there is a reliable screening test for the disorder; and early detection can be made from newborn blood spots or other specific means.
“Newborn screening is a rapidly changing field. We know that expert opinion on newborn screening will continue to evolve as medical evidence mounts, and we continue to stand ready to update our recommendations as needed to the states and to the public.”
Tags: birth defect, CCCHD, critical cyanotic congenital heart disease, heart conditions, newborn screening, newborn tests, pulse oximetry
September 24th, 2011 at 2:05 am
This is such wonderful news! My daughter was born with an unknown CHD and luckily we had a pediatrician who took great care of her. I am so thankful that this bill was passed!
January 30th, 2012 at 10:58 am
How can a person find out the status of her state’s adoption of these screenings? Is there a model bill that can be introduced to our state legislatures to mandate hospitals to do them?
January 30th, 2012 at 11:50 am
Parents can find out which tests are routinely done in their state by asking their health care provider or state health department. They also can visit the National Newborn Screening and Genetics Resource Center Web site at http://www.genes-r-us.uthscsa.edu/nbsdisorders.pdf. This site lists commercial and nonprofit laboratories that provide comprehensive newborn screening for parents considering having their baby tested for more disorders than those screened for by their state.
December 6th, 2012 at 9:50 pm
This is great news! My son was born with a severe CHD–DILV–essentially he only has one ventricle. He was diagnosed at 20 weeks in utero–thank God! He’s had 2 open heart surgeries is now 8 months old and is thriving! Early Detection is key to survival.