Tuesday, February 12, 2013

CHD awareness week

Another sweet heart warrior got her wings last night. After fighting for the last 7 months in the hospital, Kylie's heart just couldn't take anymore. She was only four years old. Congenital Heart Defect Awareness Week is February 7th through 14th, please spread the word  in honor of Kylie.

"Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood."

Why is awareness so important?

Parents need to be informed.
There are too many tragic stories of CHD going undetected, and ending in tragedy.
Cora's mom is spreading the word about pulse oximety testing in honor of her angel, who passed away when she was just five days old, due to an undetected heart defect.
Know the signs of CHD and ask for a pulse oximetry test 24 hours after birth. It is non-invasive and very inexpensive.

Sarah Kaganovsky post on the Fierce Mama blog about her daughters heart defect that went undetected for a year. Her constant baby wearing, and never letting her baby cry it out is what saved her life.

More research is needed!
1 in 100 babies are born with some type of heart defect. 1 in a 100!!! Of those babies born with a heart defect, more than 50% will require at least one invasive surgery in their lifetime.
In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined.  However funding for pediatric cancer research is five times higher than funding for CHD.

These heart kids are amazing. They are fighters, and they all deserve the very best chance they can get at life. Lincoln did. The procedure Lincoln had was only 15 years old. Research done by the American Heart Association is the reason why his procedure was possible. In the last ten years death rates for congenital heart defects have declined by almost 30% due to advances made through research.

They are currently working on some amazing things. Perfecting current procedures, engineering heart valves from patients cells, improving safety during surgery just to name a few.

You can make a donation here.

Organ Donation
This one is big. Before we knew much about babies born with broken hearts, Will and I had different opinions on Organ donation. I don't mean to throw him under a bus, but he was unsure about the whole thing. He was undecided on his drivers license. After a week of being introduced to the heart world, and meeting sweet babies waiting for a heart, he quickly changes his mind.
Deciding whether or not to donate your childs organs is a decision no parent should have to make. But make it now, decide now to give life.