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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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