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Last Updated: 07/21/2008
 
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 Article of Interest - Birth

Help for Parents of Children Born with Heart Problems
by John Langone, New York Times, July 30, 2002
For more articles on disabilities and special ed visit www.bridges4kids.org


Before a woman even knows she is pregnant, the tiny heart of the baby within her has formed its chamber and shape. Although that embryonic organ may appear to be functioning normally, a passive form of congenital heart disease may be waiting to emerge.

 

As one woman says in this informative guide: "I had 13 sonograms when I was pregnant, and they had no idea Joseph had a problem until after he was born."

 

Every year, about one in a hundred children in the United States are born with congenital heart defects. Given that only cardiac rhythm disturbances are routinely treated in utero, said Dr. James C. Huhta, a physician-consultant quoted, repair must be done afterward. Sometimes newborns go right to the neonatal intensive care unit. Others have defects that do not require immediate intervention. Some will not need surgery at all.

 

Written by two mothers, each with a child born with congenital heart disease, the book is a sensitive and collaborative effort with dozens of experts in the field, and it is structured in a question-and-answer format that sheds light on the defects. 

 

It addresses testing and ways to prepare a child for the experience, surgical treatment options and ways that parents can cope while waiting for something to be done. 

 

This is especially important for parents of infants who need immediate surgery, because, as the authors note: "You don't have time alone, at home, with your newborn. The hospital becomes your home, and your difficult times are often spent in the midst of a lot of strangers." 

 

"The Parent's Guide to Children's Congenital Heart Defects," by Gerri Freid Kramer and Shari Maurer, Three Rivers Press, $14.

 

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