Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, February 8, 2009

CHD Awareness Week

February 7-14, 2009 is Congenital Heart Defect Awareness Week.

**A Congenital Heart Defect (CHD) means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels. There are approximately 35 different types of congenital heart defects.
**CHDs are the #1 birth defect in America, affecting approximately one in one hundred or 40,000 newborns every year.Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect -- of those, 87 will be born with a congenital heart defect -- that's more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)
**CHDs are responsible for one third of all birth defect-related deaths, and sadly 20 percent of children who make it through birth will not survive past their first birthday.In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
**For many children a new heart is the only option, but only about 30% of the children who need a heart transplant receive one in time. Elaine was one who was part of the 70% who could not wait long enough. In 2007 there were 327 pediatric heart transplants performed in the United States. The average heart transplant only lasts around 10 years

Penny Left me a comment that I thought was very important and thought I should add. "Just to add to your statistics, as you are referring to CHD, it might be appropriate to point out that of the "Down Syndrome (12)", about 6 of them will also have CHD as nearly 50% of babies born with Down's Syndrome also have CHD.

I am so amazed at all of our little friends... CHD's are sometimes very complex as in Gator's case. Sometimes CHD's are something that accompany another complex issue. So here is a shout out to all our little friends with CHARGE, T-21 (Down Syndrome), T-13, And CHD's alike!!!!


Penny Green said...

Just to add to your statistics, as you are referring to CHD, it might be appropriate to point out that of the "Down Syndrome (12)", about 6 of them will also have CHD as nearly 50% of babaies born with Down's Syndrome also have CHD.

Penny Green
Down's Heart Group

Jake & Stephanie Ellinger said...

Would it be ok with you if I copies this information and put it on my blog. I'd love for my family and friends to read this.

Heart Mommy said...

Of course you can.. I stole it from Melissa's blog... She is the BEST!!!!

Melissa said...

I stole it from Aimee's blog!

Likes Chocolate said...

Good Job!!! Tomorrow, Roman and I are going to watch our Govenor sign into law an official CHD week here in Georgia. Now if we can only get more media attention then maybe we can get more funding.

Kenny & Michele Kingsford Family said...

I'm stealing it too! Thanks for sharing! ;)