Tuesday, May 24, 2011

A Moment for CHD Awareness

Call me crazy, but a "no brainier," completely painless, dirt cheap, and super-fast test that could reveal serous heart problems is the LEAST we can do for tiny persons just beginning their life... however few and far between babies with CHD may be (ahem, the # 1 birth defect). If one life is saved, that is enough for me.

In Missouri it's called Chloe's Law - here, for me, writing from Virgina - I'm going to call it "Gabe's Law" for now. What do these two children have in common? They were both born with undiagnosed CHD's that could have taken their life rapidly. They both had doctors, who at first, actually downplayed the symptoms the parents raised (keep this in mind by the way, this idea of doctors missing symptoms of serious heart defects, just remember that...you'll enjoy the irony later).

I don't know Chloe, but I found her story online and was impressed by her mother's work on the "pulse ox issue." I do know Gabe. He lives nearby. Gabe was born with Truncus Aterious, like Gwen. At some point - I'd like to share more about Gabe and his family - but I have to stay on point -however his mother has been an integral part of support on my journey. For now, let it be known that Gabe is a thriving, smiling, 9 year old red-headed little boy. But he is one of many examples that, yes, CHDs can be easily missed.

I have to say, I appreciate this news article (which I will link to momentarily). Finally a journalist did some real leg work regarding pulse ox and dragged some meaty information out into the light. I've had questions - I couldn't understand why this was a decision a governor might have to ponder. Babies life? What's to think on? Move the pen. Right? I read this article and I now feel more fully "versed" on the issue, more "balanced" if you will. And my "stand" on the issue remains the same. Move the pen.

This article offers some insight into well, the "issues" raised against mandating this test as recommended by the department of health and human services. And while I'm glad to have some points to address as I try to help spread awareness for this issue - I have to say, I had to pick myself up off the floor first, after reading this article.

Before I go any further - I want to address the "issue" of bias - that I sound like a crazy "baby-loss" mama who is a giant alarmist who needs attention or perhaps is hyper-vigilant and over-sensitive and ya know, have lost my perspective. You know, the argument being that I am too close and all I see is CHD everywhere and I'm trying to make every one afraid.

Let me offer this, and take it or leave it, but I'll toss this other thought out there. I desperately want every baby that is born to have the best chance possible - and this (helping promote mandatory pulse ox tests into law) is ONE SMALL, tiny, minuscule thing I can do based on the "experience" and "knowledge" I bring as part of the CHD word and part of the "baby-loss" world.

I think of all my friends and family their children and beg God to keep this type of pain local - here - and never touch anyone I know with this kind of loss... I simply want to do what I can with what I know. And believe me, I know about CHD. Should I just sit on it?

In particular let's talk about this "kind of loss" (a baby dying from an undiagnosed CHD) and what I know about it from the "underground" world where "baby-loss moms" and "heart moms" meet up and share their stories and support each other: A baby, undiagnosed with CHD can die in a mothers arms while nursing. It doesn't happen often. Yes, it is rare. It is also preventable. Preventable trumps rare any day.

Read about Cora here if you think I'm being a dramatist.

I'm an advocate for all moms, moms who don't know about this- until -well, you get the diagnosis for your baby....). Believe me, YOU DON'T want your baby to die if you can help it, you don't want your friends baby to die, you don't want your neighbors baby to die - and yes, it "may not happen much" but if we can save even 1 life this year...isn't it worth the few minutes it takes to strap a tiny strip to a baby's toe and get an oxygen reading 24 hours after the baby is born?

I honestly can't believe there is any "argument' here...but read this article and see - there are people who are shooting down this proposal:

Test to detect heart disease in newborns may be mandatory in all hospitals.
And seriously - one argument proposed is that this test might give parents a false sense of security. Apparently there is concern that if parents are told their baby passed the pulse ox test they, "wouldn't seek medical care for symptoms that may develop later" - Um, excuse me - there is a remedy to that - it's called the written and spoken language. And pardon me as I get up off the floor...

Hopefully, doctors, you are giving plenty of information to new parents regarding ALL the tests and procedures preformed. Perhaps you even hand out information regarding other helpful areas relating to newborns (nursing, bathing, car seats, shaken baby syndrome, symptoms of potential medical issues, just to name a few). Please, tell me you are handing out information about symptoms of the number 1 birth defect. And you can say it and write it, that CHD's can be missed by pulse oximetry screening, and stress that parents need to know the symptoms.

Really. There is a "remedy"...to that "fear"...

Also -let us take a moment to address CHD symptoms here on this blog and help keep "awarenss" up and I'll even set a ground-breaking example. I'll include a "disclaimer."

Although helpful in screening for heart problems present at birth, a "pulse ox test" only screens for certain defects. Not all CHD's can be found by a pulse ox test, even severe ones can be missed. Here is more information regarding CHD's to keep in mind as you care for your newborn:

"Some congenital heart defects have few or no signs or symptoms. A doctor may not even detect signs of a heart defect during a physical exam.

Many heart defects do have signs and symptoms. They depend on the number, type, and severity of the defects. Severe defects can cause signs and symptoms, usually in newborns. These signs and symptoms may include:

  • Rapid breathing
  • Cyanosis (a bluish tint to the skin, lips, and fingernails)
  • Fatigue (tiredness)
  • Sweating while feeding
  • Not gaining weight (failure to thrive)
  • Poor blood circulation" 
(source CHD Babies)

All said, I can't believe for a moment this won't pass in NJ and every other state. So I'm gonna go chill-out now.

But take a moment and read this article please, so I can know I'm helping to spread awareness. Spreading awareness really takes two here - I can't spread squat if you don't actually take in some of what I'm ranting about.

1 comment:

  1. You tell 'em, Laura! I plan to begin the battle here in Arizona soon, very soon. Love ya!


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