Sunday, February 13, 2011

These are my heart songs...

...they never feel wrong
And when I wake for goodness sake
These are the songs I keep singin'
-Weezer, "Heart Songs"

Many my favorite blogs are written by moms of heart babies. (See my Blogs With Heart link above - fantastic title shamelessly stolen from Stefanie's blog!) Some are touching, some are funny. Some are by people I know exclusively online, some I now consider friends. But during the past week, many of them have been celebrating Congenital Heart Disease (CHD) Awareness week. My blog has been noticeably silent.

I think advocating for CHD survivors by raising awareness is valuable and important. But I think that a lot of people want to raise awareness without much consideration of what that really means. My thoughts on this issue stem from some things that the late, great Steve Catoe (aka The Funky Heart) posted often on his blog. It’s not about awareness – it’s about education. Awareness with a purpose.

Want to know why I feel a bit conflicted about “raising awareness” for CHD?

Quick – what color is breast cancer? Have you bought something pink lately? The Susan G. Komen Foundation (which I think is a great organization) has been masterful at getting their pink ribbon runner onto boatloads of products from apparel to snack foods. Everybody knows about the Komen Foundation and that they “support” breast cancer. But what do they do with all those yogurt lids? How does that improve the lives of women with breast cancer? Has the money invested in breast cancer research, treatment, and support for survivors improved life expectancy or reduced the incidence of breast cancer?

Sadly, not much. In 1991, 117 women died each day of breast cancer. Today, it's 110. (Great article from the Chicago Tribune HERE - it talks about how and why advocacy and awareness isn't making a difference.) And y'all know that breast cancer is a cause near and dear to my heart.

So, forget simple awareness. Advocacy is great, but it's useless without an end product. I want education that results in action:

#1 - I want pulse oximetry screening for EVERY newborn in EVERY hospital. Never heard of a pulse ox? (It doesn’t involve any oxen, I promise!) It’s a small red light that is placed on a finger or toe or foot, and it measures the level of oxygen circulating in the baby’s blood.

(yup, that's Jay's adorable baby toes!)

“Normal” is 100, meaning 100% of the red blood cells are carrying oxygen. This test is as simple and painless and non-invasive (and cheap!) as a test could possibly be. There’s no reason that we shouldn’t be doing this on every child as part of the basic newborn screenings, just like hearing screening.

Immediately after Jay was born, they heard a heart murmur. They’re very common in newborns, and many resolve on their own shortly after birth. The pediatrician still heard it several hours later when he performed his first exam. Again, still no real concern. It wasn’t until my incredibly wise, carefully observant, wonderfully compassionate lactation consultant - and friend – noticed his struggles to breathe & nurse that Jay was tested with a pulse ox. I will forever be grateful that she acted so quickly to stick that little red light on his toe.

A low oxygenation reading doesn’t mean that a child has a heart problem. And some heart problems aren’t identified by low 02 levels. But it can be one early and easy piece of evidence to identify problems before a child leaves the hospital. Babies with heart problems don’t necessarily look sick. Mine didn’t.

#2 – I want better prenatal screening to check for heart defects. Did you know that 1 in 100 children born in the US will have some sort of a heart defect? Read that again - 1 in 100! That’s huge!

I struggle with this a bit because CHD are not always easy to diagnose prenatally. There’s no blood test, no genetic marker for heart problems. I had a level 2 ultrasound while I was pregnant with Jay, and yet it was missed. But I want better ways of discovering CHD and treating it early. Did you know that there are some heart problems, even some of the most severe defects, which are now being treated SURGICALLY in utero? How cool is that? I want to find better ways to identify and treat heart defects early. Very, very early.

Agree with me? Here’s what you can do:
Ask for a pulse oximetry reading on your baby before leaving the hospital. Tell your friends to do the same.
Contact your legislators, your state’s department of health/human services, and other agencies to say that you support this testing for all newborns.
Support research for new treatments, improved surgical techniques, better medications (y’all know Jay takes tiny doses of rat poison every day – in this day & age, we’ve got to do better than that!). Support research that improves outcomes.

This weekend, I was in Chicago with some wonderful girlfriends (more to come on that topic soon!). But up and down the Magnificent Mile, there were bunches of these adorable heart statues, each decorated by different groups with a different theme.

(see that one above?! It's a heart that's been stitched up!)

At the bottom of each one was a message – a little tidbit of information about your heart. Tips for keeping your heart healthy. Facts on congenital and acquired heart disease. Signs of a heart attack.

(These two were both about diseases of the heart valves.)

Now THAT’S awareness that means something. And I'll keep singing my Heart Songs in the best way I know how.


Sush said...

Jen, have said so much so eloquently. You are a wonderful spokesperson and advocate for furthering education and awareness of all causes. Thanks and love,

Anonymous said...

What a beautifully written, powerful post. You are an amazing woman, and I have no doubt that your passion and commitment WILL make a difference in this cause and the lives of many others. Mallory

Anonymous said...

You said that as beautifully as anyone could and education is certainly the key to action on this very important and near-to-our-hearts issue!! I am so very proud to have you as my family and friend!! LYTB, AJ

Joye said...

Great post, Jen! I, too, am missing Steve's wise thoughts...especially this past week.

I really like the phrase "awareness with a purpose". Beautifully stated!

Can't wait to hear about your Chicago trip; I love all the hearts!

Emily Erin said...

Thanks for raising my awareness... will have to marinate on this; great thoughts, as always.

Anonymous said...

What a wonderful post. Thanks so much for sharing your wisdom and insight. And good luck tomorrow with Luke's adenoid procedure. I am sending you all lots of love that it goes off without a hitch!