 SEE Alaska's 2002 Proclamation!!
A disturbing, and little-known statistic: At least 1 in every 100 infants are born with a heart defect. More babies are born with CHD than with Spina Bifida, Down's syndrome and HIV, combined!
We barely got on our feet after Timothy's open heart surgery (2 weeks after his actual diagnoses) when our next son Taylor, was born with yet another CHD. Many statistics report the general public (YOU) to have a 1% risk of having a child with CHD. This is based on LIVE births:( These statistics- do NOT count those children diagnosed with CHD later in life (such as Tim). MANY children are diagnosed at 2 months, a year... ADULTS are sometimes diagnosed with a CHD that was missed their entire lives- some requiring open heart surgery- some collapse & die as they play sports in school/boot camp etc.! However, these are NOT included in the reported statistics. Many cardiologists suggest family members of a CHD child have their hearts checked and often they find an undetected CHD. A congenital heart defect is present at birth. There are at least 35 distinct types of congenital heart defects & every year there are around 40,000 babies born with CHD- making this the #1 birth defect in our children today! Heart defects are the leading cause of birth defect related deaths. In most cases, scientists do not know the cause of CHD. Heredity, perscription drugs, over the counter medicines, virus' as well as alcohol & "street" drugs may increase the risk of having a baby with heart defects. Other causes that affect the hearts developement are under study. In our case (& MOST others) we never took drugs or drank alcohol, and only took prescribed medications. We have no other CHD's in our families... cardiologists were shocked to find these two defects occurring in siblings. One of the cardiologists we have seen has said "This clearly has a genetic componant"- the next one says "It is a case of lightning striking twice- it just DOESN'T happen. There is probably no need for a genetic work-up". And most recent... "There is possibly something going on here that has a genetic or perhaps a combination of genetic and environmental components."
After seeing one of our children on life support- we were terrified of another CHD while expecting our next child. Still, the Drs. never told us there were more extensive tests available. I only learned of "fetal echocardiogram" eleven days AFTER our sons birth/death. This may have detected his CHD (or may not have?) We COULD have been more prepared. We could have given birth in a GOOD cardiac area, rather than traveling further north in search of a safe c-section.
During the fight to keep our youngest son alive, the hospital searched throughout S.E. Alaska for a specific drug to help keep his Patent Ductus Arteriosus (PDA) open (prostiglandin E maintains patency) - this could continue his blood circulating. They found NONE in S.E. Alaska! Juneau had a bottle but it was out dated. About 6 hours later, (he was intubated & barely "holding his own") the medication arrived with the airlift team. Unfortunately, it was too late. After the fact, we were told they would now keep this drug on hand in their facility "We may not need it for another 6 years- but we'll have it".
From 1986 to 1996 death rates for congenital cardiovascular defects declined 25%, while the actual number of deaths declined 14.4%. We would like to see these rates decline even MORE.
I have seen statistics showing as little as 3% of the total money donated to AHA is used for CHD research...
PLEASE consider giving to the American Heart Association during their fund drive or ANY TIME... & think about giving SPECIFICALLY for CONGENITAL HEART DEFECTS. (if not specified- VERY LITTLE will actually go to CHD research!)
Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. A BIG heartfelt sk ^i^ Timothy's story
CHD Endowment Information Artical written by Raymond Runyan, Ph.D. American Heart Association & children Heart disease & defects 
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