06 August 2010

awareness & advocacy

I have to admit: I tend not to be a very cause-oriented person. Right or wrong, I think it's at least in part a reaction against being the type of person who once felt like I had to care about every single cause that was put in front of my face, and the truth is, it's just not possible to care about everything. You have to choose.

You and I both know at least one thing I care about now (and if you're here, I'm assuming you do, too): Congenital Heart Defects (CHDs). In fact, I've got quite the bee in my bonnet about it.

Anyone who knows James and I knows that we are educated people. We had done a lot of reading and research. We had all the books, and we were aware of a litany of things that could go wrong with a pregnancy. And yet, CHDs never came up. Not once.

Prior to learning about Ewan's heart, I had never heard anything about congenital heart defects. I had heard of spina bifida, Down's syndrome, club foot, cleft palate, and a host of other abnormalities that may present themselves in an ultrasound. There was an awareness that just about anything could go wrong in a developing baby, including the heart, but in a very back-of-the-mind, I-don't-need-to-worry-about-it kind of way. I had never known anyone or heard of anyone who had experienced this, so in my mind, it couldn't be all that common or worth worrying about.

This couldn't be further from the truth. As birth defects go, CHDs are very common. In fact, they are the most common birth defect, occurring in 1 out of every 100 births. CHDs claim the lives of twice as many children as all types of childhood cancer combined. And yet -- in spite of how common they are -- pregnant women are not routinely screened. So many of the families we've met didn't know anything was wrong until after their children were born -- and in some of these cases, it was just too late.

But enough from me. I've barely started out on this road, and I'd like you to hear from someone who has more experience. Stefenie is another wonderful and encouraging Heart Mom I've met through blogging. In a recent post, she put some good words to that vague, niggling feeling I've had about the lack of general awareness that exists about CHDs. Please read on.

5 comments:

Stefenie said...

Thanks for sharing my blog! I was the same way before I had Logan. Not really a passionate advocate. However once Logan's diagnosis set in I knew I had to do something. I decided that I didn't want another family to find out the way we did.....almost too late.

A fire has been lit inside of me since that time and now CHD advocacy is all think about.

I don't want Logan to ever feel that I didn't give my all to help him.

Kristine said...

This is exactly what Cora's non-profit is focused on. I first heard the phrase "congenital heart defects" from the coroner. No mother should hear about it this way. No woman should be blindsided at her 20 week ultrasound or when baby is whisked away at birth and put in the hands of a surgeon. I'm sorry you had to be blindsided, too. Would love any ideas you have. We're primarily going to be geared to pregnant woman (healthy/undiagnosed) and moms to get those signs and symptoms out, and tips for prenatal care, and general awareness so parents aren't blindsided by this.

Melissa Elsner said...

This is so good Kirsten! You definitely have a reason to have that bee in your bonnet! Working with children, I'm an advocate for it all!!! I can't pick just one.

Melonie said...

I came her from Stefanie's blog, seeking TOF moms. My daughter was born with TOF and other things. I will continue to follow your blog and keep your family in my thoughts. If you would like to talk with another TOF mom, feel free to connect with me.

BlessedMommy said...

Hi! I found your blog through Stefanie's blog!

I'm 37wks pregnant with a boy who has been prenatally diagnosed with TOF. After researching how often CHD's are overlooked and/or not diagnosed until after birth, I feel so blessed that ours was "caught" by a watchful ultrasound tech. Several fetal echos later and we are starting to wrap our minds around what the upcoming year will bring!

I will continue to follow you! You can read our journe at: www.preciousmason.blogspot.com

Prayers for you family!!!