Friday, February 9, 2007

HLHS, TGA, PA, ASD, VSD, COA, TA, TOF, ALCAPA, AVSD, DILV, DORV, TAPVR

HLHS, TGA, PA, ASD, VSD, COA, TA, TOF, ALCAPA, AVSD, DILV, DORV, TAPVR

A Day for Hearts was developed to create awareness of CHD and involve others to help increase public knowledge. An international coalition of families, individuals, non-profit organizations, support groups and health professionals participate in the Day for Hearts campaign. (
www.tchin.org/aware)

There are different ways to help raise awareness of CHD. Spreading the message via e-mail or word-of-mouth can also be powerful ways to raise CHD awareness. Please take time on February 14 to honor families of children and adults with congenital heart defects and the professionals who work with them, and to help remember the memory of lives lost.

Below is a letter my friend Rita Scoggins sent to her local newspaper a few years ago. Nothing has changed....

HLHS, TGA, PA, ASD, VSD, COA, TA, TOF, ALCAPA, AVSD, DILV, DORV, TAPVR –Looks like alphabet soup, doesn't it? But no, it’s something much more serious than that. When parents hear a doctor label their child with one or more of these conditions, they have just stepped into the world of congenital heart defects (CHD) – a world they probably know nothing about.

Here are some startling facts. Congenital heart defects are the number one occurring birth defect – it is estimated that each year in the United States 40,000 babies are born with one of the many known heart defects.Over one million children and adults in the U.S. are living with CHD. The American Heart Association says that in 2001, 4109 Americans died from cardiovascular defects.Each year nearly twice as many children die from heart defects than all childhood cancers combined.

So, why don’t people know anything about CHD? Why don’t people know about the most common birth defect killer?

Many have heard of childhood leukemia, Muscular Dystrophy, Spina Bifida – but not the condition that takes so many from us.Could it be because CHD doesn’t have a Jerry Lewis or Marlo Thomas raising money for it? No celebrity has taken on heart defects as their pet project. Large scale publicity about CHD is rare.

Or, maybe it is because the AHA has very little information for parents of “heart” children? The AHA likes to use little ones with heart problems in their fund raising campaigns, but it is almost impossible to make a donation directly to help find a cause or treatment for CHD. The AHA does have a legacy fund for CHD, but it is a regional fund. Even the brochure they have for parents of children with CHD comes from a regional office – making it hard to get if you don’t live in that area.

So, who is speaking for those born with CHD?

When people were beginning to get Internet in their homes – probably about 10 years ago – parents of children with CHD started to seek out one another. The Internet is a wonderful place for people with like interests to connect with one another. And, that is just what “heart” parents did. (tchin.org)Now, parents who have access to the Internet will find many sites dedicated to babies, children, and adults who have CHD. It is a wonderful start – this connection of parents associated through a child’s heart. But these parents want more. Some want people to know about the signs and symptoms of heart defects.Some want others to know what the effect having a child with a serious medicalproblem has on a family.Some want other heart parents to know that they are not alone.Some want to help other parents find resources for their children – things like summer camps and help with finances.And some want people to know that more research into the cause and treatment of CHD needs to be done.

So, what can a group of parents, most of whom only know each other through the Internet, do to get what they want?

In 1999, lists supported by CHIN all wrote to their governors asking them to proclaim February 14th as “"A Day For Hearts: Congenital Heart Defect Awareness Day." Ever since, governors across the nation have declared February 14th as CHD Awareness Day. Texas has been included in this since the beginning. Yet, President Bush still refuses to sign a National Proclamation! Why? Ten Thousand people signed a petition requesting one. CHDers, and their parents, families and friends, medical professionals who work with them, Governors and government officials also requested or wrote in support of a Congenital Heart Defect Awareness Day Proclamation, still the CHD community was ignored…

Across the country and the world, people will gather on this February 14th to bring awareness to the birth defect that brings so many diverse people together. They will celebrate life. And they will remember those whose lives were stolen by CHD.

No, congenital heart defects do not have celebrities raising money to help eradicate them. No, there aren’t any national telethons or walkathons devoted to CHD. But, those affected by CHD have united to make more people aware of heart defects and the people whose lives they touch.

Please join us again this year in remembering all those affected by CHD on 2/14/2007: "A Day for Hearts: Congenital Heart Defects Awareness Day!"

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