Monday, February 7, 2011

This Heart Momma's Top Seven - #7 Awareness and Advocacy

Congenital Heart Defect (CHD) Awareness Week!

I decided to do a post each day on my top seven things I need to be the best heart mom I can be to our little CHD warrior!  The goal of my posts this week is to share my experiences being a heart mom, offer some resources for heart parents and highlight some ways we can all help to spread hope and awareness.

So let the countdown begin!

Obviously, today being the first day of CHD Awareness week, my number 7 on my list is Awareness and Advocacy.  Such big words, yes indeed, but more so how important they are.  Just to give you a few facts about how prevalent and deadly CHD's can be and WHY this is so important:

"Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. 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. Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research."  -Source: The Children's Heart Foundation

The question I know I find myself asking is WHY?  Why, when 1 in every 100 children in America is born with this defect (and the numbers are greater than this in some areas around the world), is there not MORE being done?  WHY only fraction's of PENNIES are being spent....And my final question is always, how did I not KNOW about this?

When Liam was born, I never gave a second thought to heart defects or birth defects in general for that matter.  I guess I assumed they weren't that common.  I never ONCE saw any information on CHD's.  So in my list this week, Awareness and Advocacy are definately needed by this heart momma.  Our child's hope and future depends greatly on the advance of medical technology and also the role of government in our healthcare system.

Without delving too deep in these subjects (which my husband would be a little better suited for!), I can offer some practical ways we can help.  First of all there is AWARENESS, which is the goal of this one week in February.  To educate, get the word out, and let CHD become a common term.  The more people who know about it, the better chance they have at saving a life.  They could even end up saving their own child's life someday.

Dustin and I openly share Liam's story with others.  We feel people who ask (or even some that don't!) probably want to know.  And not in a scary way,  but we just mention what a CHD is and how common it is.  So many moms I know say they know someone who has a child with some type of heart issue, even if they don't know exactly what to call it.  We also created Team Liam so we could simply spread the word while doing something good for our hearts, running.  Simple steps to spread hope.

ADVOCACY is becoming even more important, as our health care system fringes on huge changes and massive overhauls.  Another startling fact?   

The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

Funding for CHD's is grossly underfunded.  In order to fund medical technology, we need government support and funds.  Think of how the 2.2 billion a year could be minimized (and needless to say here how many more lives could be spared) if less invasive surgical procedures could be brought about?  It's ALL about funding.  And it's all about backing.  And from the responses I have received from some of our government representatives, it is clear more educating and AWARENESS needs to be done on CHD's.  It works hand in hand.

I have several national organizations links below, who are working hard on AWARENESS and ADVOCACY for CHD's.  Join them, "Like" them on Facebook or spend a minute or two to get educated on ways you can help.

I also have an Advocacy page on my blog where I will be posting letters and information you can share to help spread awareness and advocate directly to our government representatives for change!

Simple steps can make a BIG difference!

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