Saturday, February 7, 2009

Congenital Heart Defect Awareness Week

Today begins Congenital Heart Defect (CHD) Awareness week. "Congenital" very basically means that you are "born with it." And "Heart Defect", well, that's self explanatory. :) Another CHD affected family posted this information on their blog and asked that others would pass it along. I never knew much about CHDs until Julianne was diagnosed. I knew they existed, but didn't know any specifics. I've also included a little bit about Julianne's specific defect, Hypoplastic Left Heart Syndrome.

*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 Downs 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 know 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.

*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 (Julianne included).

Hypoplastic left heart syndrome occurs in 4 to 16 out of every 10,000 live births, and accounts for about 8 percent of congenital heart disease in babies. Under-development of the heart structures occurs during the first eight weeks of pregnancy. There is often no clear reason for the development of congenital heart defects. In some cases, there might be a genetic link or an environmental exposure that makes the defects occur more often in some families. In other cases, there is simply no known cause.

Thanks for taking the time to read this information. It has become such an important and relevent issue in our lives over the last, almost, 2 years since Julianne's diagnosis. We will be walking in the Baton Rouge Heart Walk in April this year and will be forming a "Team Julianne." We'll post more information about it in the coming weeks and would love to have anyone who'd like to come join us. :)

P.S. We'll be posting a Julianne update later this week! We have many exciting developments to share!


Anonymous said...

We didn't know about Uncle Jake's heart defect for 52 years. Thank goodness the doctor fixed him before he had any problems. He's as good as new now! He's still waiting to compare scars with Julianne. Love you all.

Julie Miles said...

Thanks for the post. I'm stealing it for my blog as well. We've got to do all we can to spread the word this week and all year long!