Monday, February 8, 2010

CHD Awareness Week

Yesterday was the start of CHD Awareness Week.  I am hoping everyone that reads this will know how important it is to bring awareness to Congenital Heart Defects.  Hope has been affected as have many other children.  Before Hope was born, we knew very little about CHDs...even though Jerry's sister was also affected by a Congenital Heart Defect that was repaired shortly after she was born.  When we were first told there was something wrong with Hope's heart, we naturally assumed it was something that could easily be repaired.  We were not aware of how serious some heart defects could be.  We certainly didn't know that so many children are affected by this every year. 

Please help us to spread CHD awareness, and pass this information on to at least one other person:

  • CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).

  • 1 in 10 of those born with a CHD will have a fatal defect.

  • In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

  • The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

  • There are approximately 35 known Congenital Heart Defects.

  • Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

  • There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

  • With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

  • Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

  • Only about 30% of the children who need a heart transplant receive one in time.

  • About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.
Education is the first step in helping these children live happier, healthier lives!

1 comment:

  1. Thank you for sharing this information. It is very important to spread the word. Most of us know nothing about this until it is part of our lives unfortunately. Sami was not given a chance to fight but I will do whatever I can to spread the word. There are way to many baby's affected by this. I will continue to pray for you guys.