Wednesday, December 19, 2012

Pushing for Pulse Ox

If you've read this blog for any prolonged amount of time, you're probably well aware of what I mean when I say (or write) "pulse ox".  For those of you who may be new to our story, or just need a refresher, let me explain...

Pulse oximetry screening ("pulse ox") is a test that determines the amount of oxygen in your blood.  If you've ever been in the hospital, you've most likely had a clip on your finger (a pulse oximeter) which transmitted your oxygen level to a monitor above your bed.  For the majority of us, that number will read as 98% or higher - meaning, our blood is at least 98% saturated with oxygen.  When you hear someone talking about "oxygen saturations", or "sats", they are referring to how saturated your blood is with oxygen - the higher, the better.

When Ethan was born, we had no idea that something was wrong with his heart.  Zip. Zero. None.  However, it didn't take long - eight hours, to be exact - to learn that it was failing him terribly.  This terrifying discovery came about as our postpartum nurse was bringing Ethan back to our room from the nursery and noticed that "he just didn't look right".  She quickly took him back to the nursery, where she hooked him up to a pulse oximeter, and found him "satting" in the mid-60s - meaning, his blood was only 65% saturated with oxygen.  Not good.

As you can imagine, the result of that screening began a flurry of activity which eventually culminated in someone coming to our room (without our son) to say, "We have reason to believe there is something wrong with your baby's heart."

After working through some of the shock and devastation that came along with that news, there was an intense feeling of gratitude.  We were - and still are - immensely thankful for the nurse and her keen perception, for her quick reaction time, and for a hospital that was willing and able to screen Ethan with pulse oximetry at the first sign of distress.

Believe it or not, some families - some babies - are not that fortunate.  In many hospitals across this great state, babies' oxygen levels are not screened before being sent home.  Some of those babies pass away days, weeks, or even months later from undetected heart defects, and others are rushed - urgently and critically - to a medical center capable of handling their broken heart.

Take a minute and read that last paragraph again.

Now, tell me - when a simple, inexpensive, non-invasive test exists, that has the ability to detect critical congenital heart defects, why is that paragraph above a reality for so many babies and families?! Think about it this way: if Ethan's heart defect hadn't presented so quickly (which often doesn't show up as soon as his did), and our birthing center hadn't routinely checked his oxygen levels before sending him home (which they wouldn't have), it is very likely that he would have died - DIED! - from a heart defect that could have been detected with pulse ox (which it was), and surgically repaired (which it was), allowing him to live a near-normal life (which he does).

Why is such a simple, potentially life-saving screening not the norm for babies born in our state? Why do we check their hearing before sending them home from the hospital, but not their hearts?

Thankfully, I am not alone in my frustration and disbelief.  Here in North Carolina, a stakeholder group has been formed and is actively pursuing legislation that would require our hospitals to screen every newborn with pulse oximetry before sending them home.  As with most issues, there are opponents, but we are fiercely determined to make this happen for our state.

If you live in North Carolina and would like to help us in our pursuit of this law, please take action!  If your family has a personal story to tell about pulse ox screening, you can contact me and I'll help you get your voice heard.  You can also sign up at You're the Cure to advocate for this screening by sending letters to your lawmakers, telling them how important this is.  It's an easy process and takes very little of your time!

[As of May 2013, screening for CCHDs using pulse oximetry is now LAW in North Carolina!]

It's no secret - early detection saves lives.  How many times have you heard that in regards to other issues? Heart defects are no different, and it's time North Carolina gives our broken-hearted babies the best chance possible to fight this country's number one birth defect.

Will you stand with us?



2 comments:

Wendy said...

I could have written your post (I think I have written similar ones in the past). My son Chris was one of the ones who was sent home. Day 8 of life he nearly died and was rushed to a critical care centre where his heart defect was diagnosed. 8 days. He'd been seen by nurses, doctors etc in those 8 days. Nobody put a pulse ox on him. They checked his hearing. They checked his hips. His broken heart was missed. I almost didn't get to know my beautiful, now 5 1/2 year old boy because nobody performed a quick, inexpensive test.
Thank you for raising awareness and making a difference.

Unknown said...

Buy Now Santamedical SM-110 Pulse Oximeter for kids at $12.95 Enter code I5O2HD7H at checkout time on amazon.com .

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