Monday, February 7, 2011

Save a Broken Heart

As you can see, just over on the right side of my blog, February 7th-14th is heart awareness week...and for many of us, it is specifically CHD (congenital heart defect) awareness week. It only seems an appropriate time of the year with hearts making their annual appearance for Valentines Day.  Dan and I have never indulged much in Valentines Day, deeming it as a "Hallmark Holiday", but now I have the best reason to celebrate Valentines Day for an entire week (not that my hubby is not a great reason to celebrate). And by celebrate, I mean spread the word.

Prior to May 5, 2010, I barely knew what a congenital heart defect was. Upon becoming pregnant, many of us choose to have our child screened for Down Syndrome, Edwards Syndrome, neural tube defects, and other chromosomal defects. Those seem to be the "common" concerns for a developing fetus. Beyond those tests we tend to assume that our child is healthy. I look back now and wonder why I knew nothing about the defect that would kill our son...why is it that this is not common knowledge... why does the world not know that:

  • Congenital Heart Defects are the most common birth defect.

  • 1 in 100 babies born will have some form of a congenital heart defect.

  • CHDs kill twice as many children every year than all forms of childhood cancer combined.

  • There are over 40 different types of CHDs.

  • 40,000 babies are born with heart defects every year (1 in 100) and 20 percent of them will not live to celebrate their first birthday.

  • 91,000 life years are lost to congenital heart defects each year.

These are truly staggering statistics. But, why? Simply put, it is because so little money is allocated towards congenital heart particular... detection, education and research of prevention/causes and treatments. 

"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. In the private sector, only 1% of every dollar received at the major private funder of cardiovascular research goes to any Pediatric cardiac research."- The Children's Heart Foundation

The truth of the matter is that the government and many foundations throw "gobs" of money at research and treatment of heart disease in adults, which more often than not is preventable through a healthy lifestyle, but what about these children? We can't chalk it up to unhealthy prenatal lifestyles or genetics. In many cases, such as Aaron's, there was/is no genetic link or genetic defects. Because research is grossly underfunded, we don't know the cause of these defects and it has only been during the past two decades that we have begun to delve into palliative treatments that buy our children time and quality of life. But, there needs to be more...

"Currently, the cost for inpatient surgeries to repair congenital heart defects exceeds $2.2 billion a year"- The Children's Heart Foundation

Again, this is a staggering number; a cost that could be significantly decreased with more funding for the development of less invasive procedures and more consistent and reliable treatment strategies. Ask any heart parent what their hospital bills look like, or the number of "extra" unplanned surgeries and procedures their child has had to endure and they will agree that this is part of the problem...a big part of the problem. You can't put a price on your child's health, but eventually reality hits. Eventually you get that $300,000 bill in the mail (that was only our 2.5 days in CICU, others spend weeks or months in ICU); a bill that is only one of many medical bills. This is/was a reality for us and for far too many families out there. (And, as unfair as it seems and as too many of us have found out...even when your child dies, you still have to pay that bill). 

We need to spread the word and advocate for all of the above reasons, but we also need to educate the general population, and in particular, those who are planning on becoming, or are, pregnant.  It is my hope that we can spread awareness so that another mom and dad are not hearing of a CHD for the very first time as they see only three heart chambers beating during an they find themselves feeling devastated, terrified and alone when leaving that first pediatric cardiology they are told that their unborn child doesn't have a good chance at they learn that their supposedly healthy newborn was just rushed to the NICU  because his or her heart is severely broken. Without education, they don't know where to start, where to turn or what questions to ask. I know because we've been is is is a lonely place to be.

You never think it will happen to you... we didn't and it happened to us. Given the statistics, CHD will hit closer to home than you would ever want or may not be you or your child, but it may be a grandchild, niece, nephew or friend's child. This week, please educate and  advocate...tell our stories...get the word to heal or save a broken heart. 

For more information, check out the 1 in 100 tab a the top of my blog, or check out this link to The Children's Heart Foundation.

For all of you lovely pregnant women out there, here is a great post by a fellow heart mom about everything a pregnant woman should know and ask, including 5 questions that should be asked at the 20 week anatomy ultrasound. This is often when heart defects are detected, but all too often it is when they are over-looked. 

As a tribute to CHD week, an awesome heart mom, Stefenie, is posting her interviews with heart moms and dads all week on her blog...she is a huge advocate in the CHD community. It is definitely worth stopping by for a good read. 


  1. Thank you....good info to know. Seems like it should be part of the push from the AHA this month also.
    love ya xoxoxox

  2. This was a great post Danielle. A lot needs to change in how CHDs are diagnosed and treated.

    Thanks for sharing the link to my blog!

  3. Thank you for the information. I know more medical terms than I ever thought I would - I am sure you feel the same. Thank you again. Take care.


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