Wednesday, February 01, 2012

February is all about HEART

Everyday is all about heart for me.  I never thought I would feel so passionately about a cause.  I am usually not one to rally or preach or shout awareness for causes. There has just never been a cause that triggered a feeling of passion in me to educate others.

Obviously since we learned of Katy’s significant heart defect, my eyes were opened to the amazing, yet heart breaking world of Congenital Heart Defects (CHD).  It just was never on my radar, I never knew just how common CHD’s are.  1 in 100 babies are born with a CHD.  Forty Thousand Babies are born with CHD’s  each year in the United States. 

I find it maddening that I was unaware of the #1 birth defect.

It makes me wonder why was I  unaware of the birth defect that is the cause of  over thousands of deaths each year?!

Why was I aware of Down Syndrome, the Jimmy Fund and all the children suffering and dying from Cancer?  But I was unaware of the #1 birth defect in the world.

I believe that it is because of the lack of funding. 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. (http://www.childrensheartfoundation.org/about-chf/fact-sheets)

Since I became a mother to a child with a CHD.  I have been blessed to meet many of the sweet babies with their special hearts have forever stolen a piece of mine. 

Unlike the childhood diseases that are more recognizable, our heart babies aren’t always easy to spot. 

Genevieve Norton - she is 3 years old open heart surgery at age 2 for Aortic Stenosis and moderate regurgitation.    Genevieve

Jaiden 5 months old Open Herart Surgery @ 5 Days  Jaiden

John  aortic and moderate mitral stenosis   John

Jordan 3 years old                                                                                      Jordan

Pulmonary Hypertension (has a continuous IV infusion through a central line going on 5 years now)                                                                                                       Ava

Rita                                                                                                      Rita

Sam O'Neal, 2 years old. Shones syndrome (variant of hlhs), post bi-ventricular repair                                                                                                      Sam

and of course the girl who has the most perfect broken heart I have ever seen!!

DSC_0274

I have read, and talked and heard all these kids’ amazing stories.  They each have endured more than any child should ever have to endure.  Yet, they all have an unmistakable smile on their faces that make each day a little brighter.

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.  Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research. (www.childrensheartfoundation.org)

Can you imagine what we could do with more research for these beautiful babes, who even though they have been through so much in their short lives have an amazing spirit about them.

Please visit The Children's Heart Foundation for more information and ways to help make a difference.

1 comment:

Stefenie said...

Great post!!