Thursday, May 29, 2008


I originally posted this on 4/25/08, but I thought I'd bump it back up to the top so anyone who didn't read it before might see it. Go ahead and sign the petition if you think it's as important as I do!

You probably didn't know this, because before Evie was diagnosed neither did I, but Congenital Heart Defects are the #1 most common birth defect. The stats I've found about its frequency are approximately 1/100 to 1/125 people are born with some type of CHD. However, though hospitals do a myriad of tests on babies during their first day, an echocardiogram is not one of them. I'm no doctor, so excuse me if this is an inaccurate description of what an "echo" is, but essentially it is an ultrasound of the heart. There is no way that when I have more children that I will take them home from the hospital without having an echo first. But since this is not currently a required test, it's my understanding that medical insurance would not cover it. I found an online petition through Facebook that has the goal of urging that echocardiograms be a standard test for newborns. It is my opinion that each newborn needs this because it may just give 1 in 125 babies a better chance at life. See the petition here.

You may be wondering who this petition is going to be presented to, and I don't really have an answer. I looked for details and didn't find any specifics. But I signed it anyway and would encourage everyone else to do so as well because so far it's the only thing I've found that is working towards this cause.

EDIT: For clarification, I'm fairly confident that in our daughter's case her death wasn't caused by the lack of early diagnosis. She had an ER scare but was stabilized very quickly and remained stable for the entire week leading up to her surgery. However, had we not perceived on our own that something was wrong and brought her in to the hospital, she likely would have had a cardiac arrest at home. Such is the case for many newborns with CHD.


Anonymous said...

I am glad you came upon this petition, Matt and Nicole, because I believe it is very important. I have signed it, and will certainly encourage others to do so.

Mom G.

Anonymous said...

Me too....Mom K

Nicole said...

Thank you!

Alaina Beth said...

Hi Nicole,

I just wanted to say hello to you too! It is fun to find people's blogs.

Also - I cannot believe that with those statistics there is no test? There are so many things wrong with the health care system...