This week a married couple, both medical students, welcomed their first child into the world, but the mom never got a chance to hold her baby.  She died of an AFE.  In the scant 20 months since my son Jacob was born, my outspoken nature about my own AFE and survival seems to have been benefiting pregnant moms and medical professionals in ways I could only imagine. But in the face of this news, I realize there is much more work to be done.

Still, I’m grateful to be alive and grateful people continue to be interested in what is on the horizon.  Since my December 2013 interview on Good Morning America, viewed by millions, which shockingly trended “behind” Miley’s infamous twerkfest on Yahoo!, a lot of people started talking about AFE.  That’s great, because it is such an obscure and poorly understood medical complication that continues to kill nearly half of all women it affects. The numbers the AFE Foundation received last week are the latest figures in how rare it actually is: 1 in 40,000.  We need much more attention on the second leading killer of mothers.

To recap:  I suffered an Amniotic Fluid Embolism during delivery, actually “coded” for 37 seconds, was revived into a 6-day coma, and both my son Jacob and I miraculously survived. So far, it looks like there is no apparent further complications (other than some memory issues) – a rare outcome with AFE, which more often leaves the mother neurologically impaired or, worse, dead.

I believe that my luck, combined with my intuition, led my delivery team to make unusual preparations in the event my premonitions came true.  I followed my intuition, spoke up, requested consultations, my doctors listened and they responded.  They are heroes. I am such a huge advocate of anesthesia that I make myself available to the American Society of Anesthesiology  for whatever they need.  I would not be alive without them.

 

Because of you and the desire to learn more, a major publisher will be releasing my book in the Fall of 2015 that will talk about, among other things, medical miracles, spirituality, premonitions, patient self-advocacy (“If you SENSE something, SAY something”), regression therapy and all that it reveals.

The moment I came back to life was the moment I knew there was a reason for all of it.  Some people may never know the reason for their traumatic experience, but I am clear on my message.  And I will share that insight in the months to come.

I am hopeful the attention to my case through different avenues will allow me to tell the story and cast a promising light on the possibility for treating and saving other moms. I am hopeful it will spur attention to research on better treatment and perhaps a cure.  Hopeful that other AFE affected families will be encouraged to submit their medical records for AFE research to the Baylor University study.  And hopeful that AFE families will continue to share their stories here and elsewhere.

I was fortunate, but I never forget that many are not.  My scars, therapy and other long term affects from AFE pale in comparison to losing one’s life.  This week’s news reminds me quite clearly, that a new father was born with the arrival of his baby, but at a cost no new family should have to endure.

The AFE Foundation recently elected me to their Board of Directors where I humbly join the company of some brilliant medical professionals, researchers, and of course their energetic founder Miranda Klassen. Herself an AFE survivor like me.

If one mom can do all this, just think how much more we can do if your voice joins ours?  I’m asking you to share your stories here, report AFE incidents to the AFE Foundation, subscribe to this blog, follow my Twitter and Facebook conversations (StephArnold37), engage with anything on the subject.  Publish what you think deserves a broader audience and shed some attention to the medical research work where it is needed.  If you want to donate to the AFE Foundation to help support that research, you can do so by clicking here:

Rare diseases get little study, but with AFEs occurring at the rate of 2 per week in the United States alone, it is all but rare for the families it affects. Let’s change that!