educate
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get the facts about Down syndrome
» review our reading list
visit these feature links to revelant web sites
study pertinent medical information
advocate for legislation affecting individuals with Down Syndrome
read these heartwarming essays
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Expecting Adam: A True Story of Birth, Rebirth, and
Everyday Magic by Martha Beck is an extraordinary book that
is recommended without hesitation. Although the mother in the book
is expecting a child with Down syndrome, anyone who has ever
considered parenthood or had a child herself would enjoy Beck's
story. As one critic wrote, it is not a
"lemons-into-lemonade saga," but rather a convincing
appeal to see life from a unique perspective. Another critic
commented, "I challenge any reader not to be moved by [this
book]." I do, too.
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Choosing Naia: A Family's Journey, written by
Mitchell Zuckoff, details the emotional struggles faced by a
real-life couple, Greg and Tierney Fairchild, when a routine
ultrasound reveals that the fetus Tierney carries has a severe heart
defect. Making matters worse, the nature of the heart defect
causes doctors to strongly suspect the baby has Down syndrome.
The book carries the reader through the Fairchilds choice to have
their baby, their baby's birth and fight for life before her
open-heart surgery, the surgery itself, as well the barriers
confronted by the Fairchilds on behalf of their daughter for all the
days of their lives.
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Babies with Down Syndrome: A New Parents' Guide
is written by "a knowledgeable group of parents, doctors,
nurses, educators and lawyers who cover everything parents need to
know about raising their child in an environment of love, pride and
achievement." It is an honest, upbeat and readable
guide.
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The Heart of a Child: What Families Need to Know
About Heart Disorders in Children, written by doctors Catherine
A. Neill and Edward B. Clark, and registered nurse Carleen Clark,
provides comprehensive and current information from leading medical
experts on children's heart problems. Included are: new
and updated information on the genetics of heart defects, including
syndromes associated with heart defect; descriptions of new
approaches to treatment, including surgery and medication; advice on
how to deal with managed care; information about advances in
prenatal care; an updated list of Web sites, resources and further
reading for families and friends; and a note to grandparents.
The text includes also includes diagrams.
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The Parent's Guide to Children's Congenital Heart
Defects: What They Are, How to Treat Them and How to Cope With Them
is also a great resource to turn to when researching Archie's heart
defect. This book was written by two parents of children with
congenital heart defects, Gerri Ford Kramer and Shari Maurer.
More than 30 experts in pediatric cardiology - cardiologists,
surgeons, nurses, nutritionists, counselors and social workers -
also contributed to the book's content. Throughout the book,
the doctors provide detailed answers in plain language to common
questions related to congenital heart defects. Diagrams are
also included. Most notably, however, are the personal stories
shared by parents of babies and children affected by congenital
heart defects.
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