60% of pregnant women never tested for CHD

Feb 9 2010

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

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