Most Pregnant Women Never Tested for the Most Common Birth Defect

Congenital heart defects are leading cause of infant and newborn death, yet often go undetected

CROMWELL, Conn., Feb. 8 /PRNewswire-USNewswire/ -- Three out of five women who have given birth to a child with a congenital heart defect (CHD) -- the number-one birth defect and leading killer of infants and newborns -- were never tested for the defect during pregnancy. 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.  

These findings come just as CHD Awareness Week begins (Feb. 7 – 14). The Little Hearts survey found that 60 percent of parents did not know their child had a CHD until after giving birth -- because the mothers were not tested for heart defects during pregnancy.

Of these parents, nearly three out of four (71.6 percent) wished they had known their child had a CHD during pregnancy -- mostly because they would have given birth at a hospital more equipped to handle the care of newborns with a CHD (41.6 percent).

"Congenital heart defects kill more children than childhood cancer, and yet, pregnant women are not routinely tested -- and newborns are not routinely screened -- for this defect," says Lenore Cameron, President and Executive Director, Little Hearts, Inc. "Early detection is absolutely critical to the successful treatment of congenital heart defects and, in countless cases, it saves lives."

Foresight is 20/20

Those families that did know their child had a CHD before giving birth (40.0 percent) reaped tremendous benefits from knowing in advance:

• Three out of five (59.5 percent) said they gave birth at a hospital more equipped to handle the care of newborns with a CHD
• One in five (19.8 percent) prepared themselves mentally and emotionally for the arrival of a seriously ill child
• Others did their homework: 14.9 percent of respondents said they arranged for a pediatric cardiologist in advance of their baby's arrival, and 5.8 percent said that knowing in advance was most beneficial because it gave them time to do research on CHDs during the pregnancy

More Survey Results

• Four out of five respondents (81.7 percent) said neither parent of the heart child had any family history of CHDs
• Giving birth to a child with a CHD was more common for women in their 30s (65.2 percent) than in any other age group
• Three out of four respondents (76.1 percent) said the mother did not take prescription drugs (which is considered a CHD risk factor) while pregnant with the heart child  
• Almost all respondents (96.4 percent) have only one child with a congenital heart defect; 3.6 percent have two or more children with a CHD
• Nearly three out of five respondents (58.0 percent) said their heart child has two or more CHDs; 42.0 percent said their heart child has one CHD
• The most common CHD among children of respondents was Hypoplastic Left Heart Syndrome (30.3 percent), a very serious heart defect that occurs when the left side of the heart does not develop completely

About the Survey

This survey was commissioned by Little Hearts, Inc., and was conducted during the week of Jan. 29 – Feb. 5. This online survey reflects a sampling of 318 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. 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.