Most Newborns Not Screened for the Most Common Birth Defect

Survey finds most hospitals, birthing centers do not routinely screen for congenital heart defects

CROMWELL, Conn., Feb. 7, 2011 /PRNewswire-USNewswire/ -- Only about two out of every 100 babies (1.8 percent) were screened at birth for congenital heart defects (CHDs) because the hospital or birthing center where the baby was born routinely screens all newborns for CHDs -- the number-one birth defect and leading killer of infants and newborns. This is according to a survey just released by Little Hearts, Inc., a national organization that provides support, education, resources, networking and hope to families affected by congenital heart defects.

The Little Hearts survey also found that nearly three out of five babies (58.7 percent) who were ultimately diagnosed with a CHD were not screened for heart defects at birth. Of those newborns who were screened at birth, 95.7 percent of them were screened either because they were already diagnosed in utero, showed symptoms shortly after birth or were medically predisposed to having a CHD.

These findings come just as CHD Awareness Week begins (Feb. 7 – 14).

"Some hospitals in some states have adopted CHD screening for newborns, but we need to see screening implemented nationwide," says Lenore Cameron, President and Executive Director, Little Hearts, Inc. "We've seen too many babies die as a result of a CHD – babies whose lives might have been saved if only they were diagnosed sooner, which is possible with a simple pulse-oximetry test that can produce results within minutes."  

Pulse-oximetry is a non-invasive, painless test that measures oxygen levels in the blood. Low oxygen levels are an indicator for potential CHDs. Studies have shown that pulse-oximetry screening has a high predictive value and a low false-positive rate.

"Critical congenital heart defects require immediate medical attention – and in some cases, that means a life-saving procedure or open-heart surgery within the first days or weeks of life," says Dr. Michael Gewitz, Physician-in-Chief and Chief of Pediatric Cardiology at Maria Fareri Children's Hospital at Westchester Medical Center in Valhalla, N.Y. "Early detection enables us to quickly identify and pursue a treatment plan for babies born with CHDs, which can help speed their recovery, improve their prognosis and, oftentimes, save their lives."

Universal Screening Underway

There is no federal law requiring CHD screening for newborns. However, in October 2010, the Secretary's Advisory Committee for Heritable Disorders in Newborns and Children (SACHDNC) recommended to the U.S. Department of Health and Human Services that screening for severe CHDs be added to the traditional newborn screening panel nationwide. If approved, it would be up to individual states to implement CHD screening at birth.

About the Survey

This survey was commissioned by Little Hearts, Inc., and was conducted Jan. 27 – Feb. 4, 2011. This online survey reflects a sampling of 402 respondents who are predominantly parents and other family members of children with congenital heart defects.*

About CHD Awareness Week

Congenital Heart Defect Awareness Week runs Feb. 7 – 14, 2011. It is an annual awareness effort to educate the public about congenital heart defects. Participants include individuals, local support groups, national and local organizations and congenital cardiology centers around the world.

About Congenital Heart Defects

Congenital heart defects (CHDs) occur when a baby's heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.

There are approximately 35 different types of CHDs. Some may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood. However, many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.

About Little Hearts, Inc.

Little Hearts, Inc. is a national organization providing support, education, resources, networking and hope to families affected by congenital heart defects – the number one birth defect. Approximately 40,000 babies are born each year in the United States with a CHD – about one out of every 125 babies. Founded in 1998 by Lenore Cameron after her son was born with a CHD, Little Hearts serves families nationwide who currently have or are expecting a child with a CHD. For more information, visit www.littlehearts.org.

*Margin of error plus or minus six percent.

SOURCE Little Hearts, Inc.