Tuesday, February 14, 2012

and you can take these things to heart...


you can take these things to heart
when the bullets fly, i am on your side
yeah you can take these things to heart
no one's ever gonna love you like i do
doesn't matter about the mess you're going through
no one's ever gonna love you like i do, like i do, like i do
you can take these things to heart
-Kyler England, "Take These Things to Heart"


So I think this is a blogging first - a song by a musician that I really know in real life!  (Okay, we're not counting Jay's musical debut of "I Got a Tomato," though I do know him well, and his performance was certainly as entertaining as any professional musician.)  Kyler England is a great singer-songwriter that I first encountered at CoffeeSHAC at NC State, and she's really making a go of it as a professional musician.  I love her songs, and of course these particular lyrics really spoke to me as a Heart Mama.  Take a listen - I think you'll like her too!

So, Happy Valentine's Day, my friends.  And let me take a moment today to celebrate the end of Congenital Heart Disease Awareness Week.  I follow scads of heart mama blogs and they have been filled with stories of folks who have traveled the heart highway.  Maybe not always the same path, but we do share each other's hurts in a very real way.  Feel free to check out the Blogs With Heart section of this page if you're interested in hearing their stories.  Or for you Pinterest fans, you can check out the Faces of CHD board and see more than 200 sweet little ones who were born with broken hearts.  (You just might recognize a tough little Rocky imitation - Jay was #200 added to the board!)

I think that Ruth from A Trip to *Holland said it best when she says that "We read to know that we are not alone."  The CHD community has been incredibly supportive of me - in fact, Ruth took the time to email me and let me know much of what we could expect with an artificial mitral valve.  She was so encouraging and reassuring as we figured out what it would mean to care for a child on blood thinners.  She helped me to see that our life could once again be pretty normal, and I'm incredibly grateful for the support we've had from so many fellow heart moms.

But I have to admit that I struggle a great deal with the widespread notion that we must raise awareness of CHD.  So many people seem to believe that awareness = more funding = better outcomes for our wee ones.  THAT IS SIMPLY NOT THE CASE.  Awareness definitely can lead to greater financial support for a cause that's near and dear to my heart (pun intended!).  But here's the thing - money doesn't equal lives saved.  Research dollars don't necessarily turn into cures or prevention or better detection.  They can.  But they don't always.

Case in point - in the last ~25 years, there has been an enormous push to raise awareness of breast cancer.  You've all seen it - from the pink ribbons on top of your yogurt to the pink bracelet that I'm wearing right this minute.  Pink has become synonymous with breast cancer, and by sporting those pink shoelaces, you're saying proudly that you "support" breast cancer.  We're all aware - in fact, many people are so "aware" that they mistakenly believe that breast cancer is the #1 killer of women.  (It's heart disease, for the record.)

But what the heck does that widespread awareness mean in real life?  Well, for one thing it means plenty of funds lining the pockets of some prestigious nonprofits.  (I'm not picking on Komen.  Okay, yes I am. They brought in about $400 MILLION in 2010, and 34% of that went to "education." Education is nonprofit speak for raising ever more awareness.  And really, we're aware.)  But you know what else all this awareness means?  Nuthin'.  More women are fighting breast cancer than when the pink awareness campaign began.  And the outcomes for a woman diagnosed today are essentially no better than they were in the 70's.  We're aware, but it sadly has made little difference.  The Slate article "Sink Pink" from a couple years back details this issue so clearly - if this post has made you think about the purpose of awareness, take a few minutes to read it.

So, what do I want?  Well, I do want more folks to know about CHD.  Here are some facts:

  •  Approximately 1 in 100 babies are born with congenital heart disease - it's the most common birth defect.  
  • CHD is the leading cause of infant death in the US.
  • In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. 

But, as I said before, awareness is meaningless without a purpose.  So I want awareness with action, and here's the action I'm focusing my energy on right now: I want mandatory pulse oximetry screening for every newborn in the United States.  I've talked about this before, and we've come a very long way since my last comments.  Many states are making it part of the standard newborn screening panel, and that's a huge victory.  Jay was lucky - his heart defects were identified before we went home.  Many families are not so lucky.  Pulse Ox testing is simple, inexpensive, non-invasive, and uses equipment that hospitals already have.  Every newborn has a hearing screen, yet CHD is far more common than congenital hearing loss.  Let's work together to ensure that we give these 1 in 100 the best chance of a successful outcome.

(The Valentine's Day card Jay made for his awesome cardiologist.  
We love you, Dr. M!)

So, Happy Valentine's Day to you.  As you see hearts everywhere, remember the little hearts and those who are fighting right now for their lives.  And most of all, may you know that you're loved today and every day!

5 comments:

Anonymous said...

I find it odd that this is not routinely checked. My primary care checks our pulse ox each and every time we go in to the office. For a routine visit or a sick visit. Blood pressure, temp, weight, pulse ox each and every time without fail. My OB never checked it. And our pediatrician does not check it on the kids. You can ask for it of course, but it is not routine. I agree with you, it is quick, easy, painless and it can tell doctors alot. So tell us - how do we help make it happen??!!

Martha

Joye said...

Steve would be proud :)

But, I do keep coming back to the statistic that "death rates for CHDs have declined by almost 30%" in the past 10 years, thanks to research advancements. I think there's an idyllic part of me that thinks (wants?) awareness = better outcomes for our children, and that stat gives me hope that all this talking about CHDs will mean something in the long run!

As far as pulse ox screening goes, there will hopefully be a meeting in March with the AHA's Director of Government Relations about starting a PulseOx bill for NC! I'll keep you posted about the date & hopefully you can come!

In the meantime, anyone who's reading this in NC can use this link: http://www.ncga.state.nc.us/GIS/Representation/Representation.html to contact their representative and ask that they support a PulseOx bill. This link: http://pulseoxadvocacy.com/ will give you letter samples and other helpful information!

Oh, and I love Jay's Valentine card - what a great idea! (Great idea = I'll probably steal it) :)

Love you!

Niki said...

Jen, is there a petition or something we could sign to help with your cause of getting mandatory pulse ox screening on newborns? I see your friend mentioned contacting our state representative, which I will do. But is there anything else we can do to help?

Also, you really opened my eyes about the whole awareness, funding, thing. As consumers, we just assume that if we donate to a good cause that it would go to just that - the cause/research/helping people. Not that it would go into their bank account for "education". Just shows we should dig a little deeper into these organizations and find out what they really use our money on.

I'm still praying for your Mom by the way. I hope she is doing well!

Anonymous said...

I thought of Jay the moment I saw the aorta in the ultrasound last week. And I am trying to educate every mama I know in CO to get a pulse ox. But I would have never known to get one without you! Thanks for the info and let us know how we can help get it part if newborn screenings!
JB

Derek Foster said...

Joye, you're right that we have come a long way in a short time. Unfortunately, I think that is largely due to how abysmal the survival rate was for these children until this generation. So, on Jen's theme of awareness with a purpose, I think the NIH needs to be made more aware of these issues. Jay has a valve that was designed before I was born and takes a bit of rat poison everyday simply because there is no economic incentive to put research dollars into creating better solutions. There isn't enough of a market to drive the research so we are left with federally funded research and CHD just doesn't seem to be on NIH's radar. Of the ~1000 calls for research proposals on NIH's website, I can find only 3 dealing with CHD, and only those because it is lumped in with all other congenital defects. I'm not quite sure how to fix that, but the continued erosion of federal funding of research isn't helping. As one searching for research funding to support my career (and family), I'm acutely aware of how difficult it is to get this money if you aren't studying cancer, diabetes, climate change, or obesity (all really important, but not the only thing that should be funded). Okay, I'm off my soapbox now.