Monday, February 12, 2007

CHD Awareness Week

February 7 - 14, 2007 is a special week to recognize people born with heart defects, to remember loved ones who lost their battle to CHD, and to honor the dedicated health professionals who work with us.

More than 40,000 babies are born each year in the United States w/ a Congenital Heart Defect.

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects millions of families, a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

My daughter is one of these children. I was completely oblivious to congenital heart defects (CHD) - I had never heard of such a thing before Jessica was born. I had heard of down syndrome and a few other birth defects but never of heart defects. I had no idea that CHD was so common. Once Jessica was born and was diagnosed her very complex CHDs it seemed like people started coming out of the woodwork with stories of people they knew who were born with heart defects - or of babies who had died of a CHD.

I had never heard of Congenital Heart Defects but it has changed my life - my family's life forever. It's the first thing I think about when I wake up in the morning and the last thing I think about when I got to sleep at night. My daughter has endured and overcome so many obstacles caused by her CHD. It affects every minute - every second of her life. CHD has almost claimed her life numerous times and in the end it will take her from me. As I sit here at 2:30am typing I hear her oxygen concentrator humming and the humidifier jar bubbling away. I hate that thing but in an odd way it is comforting... for I know that my daughter is still with me.... for now.

My daughter is my hero. She has shown me how to love unconditionally, live life to it's fullest and have faith even during the darkest hour. Each day is a blessing, even the really tough ones. Her innocence and love brighten even the darkest room. How wonderful it is that even at the age of 18 she wants a "Little Mermaid" coloring book and some markers. Just thinking about her makes me smile.

So for this week and
especially on Feb 14th, please remember the many children around the world are born with Congenital Heart Defects. I have known too many who have died way too young and others who undergo surgery after surgery just to stay alive - just as my daughter has.

If you would like more information about Congenital Heart Defects or want to help, please go to Congenital Heart Information Network.


Terri said...

I'm with you Nancy...
until Matthew was born...I had not known of anyone that had a baby w/ a heart defect....
so... I was sooo shocked to have a baby w/ a heart defect...
and then to find out it is the number one defect to boot...

Sure changes your life... doesn't it... but I would not trade my little hero for anything in the world.... he's taught me so much.

Nancy said...

18 years and counting can get a bit tiring but I would never EVER trade her for anything either. These kids are sooooooo amazing, aren't they?

anth said...

take Heart as I have a CHD and am proud of that. There are currently 1 Million Adults living with CHD. You can learn more at
the Adult Congenital Heart Association