March 22, 2023 • 31 mins
In this episode of Power of MoMMA’s Voices, we have a special episode to commemorate Amniotic Fluid Embolism Awareness Day. Nicole Purnell interviews Miranda Klassen, an AFE survivor and the founder and executive director of the Amniotic Fluid Embolism (AFE) Foundation. Her passion for raising awareness of AFE was created from her own experience, which she shares in this podcast. She also explains the mission of the AFE Foundation and some of the life-changing programs that the foundation is involved with including, education, research, the AFE registry (which is the largest in the world), and support groups. “We do a lot of things to support our community. They're so very special to us,” said Miranda. Miranda also discusses meaningful volunteerism and the role that MoMMA’s Voices plays. The conversation concludes with a discussion of AFE Awareness Day and the tradition of lighting a candle on March 27th.
“We as a community embrace one another, despite whatever the outcome is, where we have grievers and survivors that get together…” (Miranda)
“I think some of the biggest wins we've had have been having a space where families can go and have hope.” (Miranda)
“…being able to connect with others that really understand the shoes that you're walking in. They've worn their own. They've worn them down. There might be on their second pair. But they understand what it's like.” (Nicole)
About MoMMA's Voices
MoMMA’s (Maternal Mortality and Morbidity Advocates) Voices is the first-ever maternal health patient advocacy coalition established in 2018, to amplify the voices of people who have experienced childbirth complications or loss - especially those who have been historically marginalized - ensuring they are equipped and activated as partners with providers and researchers to improve maternal health outcomes.
This is a program of the Preeclampsia Foundation, a 501(c)(3) non-profit organization, and is supported by a grant through Merck for Mothers. For more information, visit mommasvoices.org and preeclampsia.org.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nicole (00:00):
Hello and welcome to today's episode of The Power of
MoMMA's Voices, where we'll besitting down with Miranda
Klassen.
Miranda is an amniotic fluidembolism, our AFE survivor who
founded the AFE Foundation,three months after her recovery
from her AFE, she now serves asthe executive director of the
AFE Foundation.
Her passion for AFE awarenesscontinues and her assistance in
(00:21):
the development andimplementation of the Amniotic
Fluid Embolism Registry, whichserves the world's largest
database of a F E cases.
Miranda, thank you so much forbeing here today.
The Power of Norma's Voicespodcast was started to help
support patients with livedexperiences.
So would you start off bytelling us a little bit about
your story and what led you tobringing this greater mission of
(00:42):
awareness and support for othersthat have had an AFE.
Miranda (00:45):
Sure.
Well, first, thank you so muchfor having me, Nicole.
I'm so appreciative of allyou've done to really lead
MoMMA's Voices and give patientsa place where they can come and
learn more about the maternalhealth space and do advocacy
work and, and share theirstories in such meaningful ways.
As you already shared, I had anunexpected birth complication
(01:06):
during the birth of our son, andthis complication is one.
that's unpreventable.
It's unpredictable anduntreatable.
It was definitely not on myradar at all.
My story, like I think manyother stories begins with just
wanting to have a family,wanting to have children, and
really start that journey andthat part of our married life
together with my husband mypregnancy.
(01:28):
uncomplicated.
I had a few small minor bumpsalong the way, but nothing that
would change the course ofdelivery.
And like I said, amniotic fluidembolism wasn't anywhere in the
books.
I had never heard of it.
I had no idea that this couldeven happen to women during
birth.
But shortly into my laboringprocess, I began to share with
my nurse that I wasn't feelingright, something felt off.
(01:50):
I became increasingly anxiousand over the course of a few
minutes, went from being able totalk and you know, labor to not
being able to catch my breath,and then suddenly had a seizure
and went into cardiac arrest.
The team quickly recognizedthese symptoms and took me to
the main operating room where Ihad an emergency c-section and
(02:13):
they delivered our son, who wasalso unresponsive and brought
him back, and then shortly afterhis delivery recognized that I
was having a pretty significanthemorrhage.
It's different than a postpartumhemorrhage.
It's called disseminatedintravascular coagulopathy, or
DIC.
And it's essentially when theblood has used all of its
(02:34):
clotting factors and runs out,and so you start to bleed and
it's very complex.
It's very difficult to treat.
So I went from, you know,talking and being excited about
birth to having a cardiac arrestrequiring CPR.
Emergently delivering my son andgiving CPR to him and then
having a pretty significantbleeding episode that required
(02:56):
20 units of product and wasplaced in a medically induced
coma.
I wasn't able to meet my son fora few days, and I remember
coming out of that experienceand trying to wrap my head
around what had happened.
That I had actually given birththat my son was okay, and trying
to process the words amniotic,fluid embolism.
(03:18):
I had never heard of it and Iwasn't in medicine, so these
were really complex words and Ijust couldn't grasp what had
happened, and I asked a lot ofquestions after being extubated.
and that continued as I was ableto go home.
Once I went home, you know, thiswas in 2008 and so Google had
just really start, we started touse the word, you know, the term
(03:39):
Google it.
Facebook had just gotten startedand I went home and tried to
research on the computer andvery little came up.
And so I was surprised by that.
So fast forward a few months, Idecided I wanted to go to the
library and see if there was alittle bit more in the medical
journals that I could find.
And what I found there confirmedthis was incredibly fatal.
(04:01):
We were incredibly lucky andblessed.
And that same search in thelibrary, I thought surely if
there are women dying inchildbirth, there should be an
organization that supports that.
And I was surprised to findthere wasn't the need was so
incredibly great and it was sortof there in that library the day
before my birthday in July thatI thought, this is what I was
(04:23):
meant to do and to be a voicefor those, who no longer had a
voice.
And to really help researchersuncover some of the clues around
this, because despite it beingaround for a hundred years
There's very littleunderstanding of it and I wanted
to change that.
Well, thank
Nicole (04:41):
you for sharing.
I think that's something toothat a lot of folks that have
had, you know, birth trauma andcomplicated deliveries and
pregnancies, there's a couplethings that we share.
And so some of them are, youknow, oftentimes there's need
for blood products andhemorrhaging and DIC and I had
somebody joke with me, theyknow, oh, that stands for death
is certain.
And it's just, it, it is commoneven though it's not out in the
(05:01):
world.
It's something that, connectsmany of us in this community.
And I know you, you do so muchfor that.
And I know when I first met you,I'd never heard of AFE either.
And even though we have haddifferent experiences to find
where there's that commonground.
And that's really so much ofwhat MoMMA's Voices is about
too, is finding thoseconnections in all of us,
getting behind them and pushingto make change happen.
(05:24):
So what are some other thingsthat, you know, projects that
you're working on on the AFEFoundation?
I know you're super busy and allover the place.
So what are some things thatyou're excited that you're
working on right now?
Miranda (05:34):
Sure.
Well the three main initiativesthat the foundation has is,
Promoting.
Education, advancing researchand offering support to those
who've been impacted by AFE.
We've done I think we've done apretty good job over the last 15
years of really embracing ourcommunity and wrapping our
virtual arms around them andproviding a lot of support and,
(05:55):
you know, we can touch upon thatif that's of interest later.
But really the top two things Ithink that are gonna move the
needle on this is understandingthe etiology, the cause of the
condition.
And that really comes down toresearch.
So when we talk about advancingresearch, like I said, AFEs been
around, it was first describedin Brazilian literature in 1926,
and here we were, it was 2008,and very little had been you
(06:19):
know, understood.
Very little had been learnedsince that point.
And so recognizing that wereally needed to say, Hey, if I
survived and there are othersurvivors, what could we learn
from women who've survived this?
Because the women who have beenlost to it, you know, they can't
necessarily contribute toresearch anymore.
What can we learn from theircases?
(06:40):
What can we learn from survivingwomen and children who've gone
through this?
And so I reached out to, when Istarted the organization,
reached out to some of the topresearchers and, Educators in
this space and so grateful tohave them.
So one of the biggest projectswe have is our AFE registry and
biorepository.
The registry in and of itself isessentially a retrospective
(07:02):
review of cases.
So if there's any, anyone that'sout there that's had either an
AFE experience themselves orlost a loved one to AFE, they
can submit their case on ourwebsite.
And what we do is we collect allthe medical records.
Review those medical records andwe're catching 650 data points
that we're examining.
And then that case getsde-identified and then it, we
(07:24):
can send out those data pointsto researchers to look for
commonalities in treatment orage or demographics or
perspectives.
And so we've amassed the largestregistry really in the world and
have had 11 publications, whichI'm incredibly proud of.
In addition to that is ourbiorepository.
The biorepository is somethingthat we know.
We can review cases, you know,another a hundred years, and I
(07:46):
don't think we'd be able touncover the etiology or the
cause of the condition.
The biorepository allows us totake specimens, real-time
specimens from women who this isoccurring even though it happens
very acutely and unexpectedly.
The training that we do with ourhealthcare providers to know
that they can contribute to ourresearch by collecting these
specimen.
when an event is occurring andthese specimens can be processed
(08:09):
in the hospitals and then sentto our biorepository so that we
can share these with researcherswho are really diving into what
causes this event.
It's an allergic like reaction.
So we're looking at cytokinesand we're looking at
metabolomics and, andproteomics.
We're really trying to drive into see if there's any way we
could predict which women thiswill impact.
(08:30):
Just to put it in perspective,there's 4 million births a year
and one in 40,000 will becomplicated with an amniotic
fluid embolism.
So you're looking at about ahundred women a year that this
could potentially happen to witha fatality rate of up to 60,
70%.
You're looking at a prettysignificant number of women who
are passing away from this.
So this biorepository, webelieve is the next step for
(08:53):
really uncovering the crucialinformation that we need to be
able to predict this and to beable to actually treat it.
Our healthcare providers arereally put in a hard place when
you have a woman that goes intocardiac arrest during labor or
shortly thereafter, and then hassignificant, as you said, death
is certain.
With the bleeding episode.
And so really healthcareproviders are only left to treat
(09:14):
the symptoms they see in frontof them.
They actually can't and don'tknow what they can do to treat
the actual inciting event, whichis probably very similar to an
allergic like reaction.
So our registry and ourbiorepository, I think, are two
greatest initiatives that webelieve will help solve this
medical puzzle to couple thatwith our education.
(09:38):
Until we uncover what the causeof AFE is, all we're left with
is trying to help clinicians andequipping clinicians to be ready
to understand how to recognizeearly signs and symptoms, and
how to treat and manage thatpatient.
Or wrap our arms around thosethat it's impacted.
So our education is somethingthat we've been working very
(09:59):
hard on the last 12 months.
We have a new online course thatwe're ready to launch.
We've teamed with clinicalconcepts and obstetrics one of
the leading educators in thismaternal health space to provide
an online on-demand course thatwill take them sort of
soup-to-nuts, everything thatyou need to know about amniotic
fluid embolism.
And then the coupling that with,once we give them the knowledge
(10:22):
and translate that knowledge,then we wanna give practical
application to that knowledge bydoing simulation and deliberate
practice.
And so we are also ready tounveil a very comprehensive and
exhaustive simulation toolkit,which is really designed for
hospitals from low resourcehospitals to very high resource
university setting researchsetting hospitals and to, they
(10:44):
can increase fidelity of thesimulation as much as they're
able.
But these two products, if youwill, this online course and the
simulation toolkit, I believewill be some of the best ways we
can effectuate and translateknowledge through those learning
styles.
Excellent.
Nicole (11:00):
Thank you so much.
And one of the things youtouched on there too, just the
fatality rate is so great and,what that leaves behind it
leaves behind, you know,families that are traumatized.
It leaves behind families thatare grieving.
It leaves behind families thathave survivor guilt and why did
I make it through this?
Or why do we make it throughthis?
And someone else didn't.
(11:21):
And also has a great impact onthe clinicians as well.
And I, I know you do such anamazing job.
I can't even say taking'em underyour wing.
Like you take them into yourarms and hold them close to your
heart and they become yourpeople and your family and you
just do an amazing job at that.
And I know you're not the onlyone.
You have worked on creatingsupport groups because you know,
(11:42):
you can only do so much, but youhave to spread that out.
So can you tell us a little bitmore about the support groups
that you guys offer.
Miranda (11:49):
Absolutely.
And thank you so much.
That's, that means so much to mecuz that really was the
inspiration, and I probablyshould have shared when I was
there at the library that day inmy search came up an obituary
for a woman that looked verysimilar to me and, both her and
her son perished.
They were lost the week before Ihad Van, my son.
(12:11):
I will never forget Jenny, andBroden.
And they were the inspiration todo this.
And so I think very early on,recognizing that families had,
you know, a variety of outcomesand we do, we have so many
different outcomes that happenas a result of this critical
event.
So we have, as you shared,families that are grieving a
loss of a wife, a daughter, asibling.
We have those grieving, the lossof a child.
(12:33):
So you have a woman who's had anexperience and survived, but her
baby didn't survive.
We have women who have requiredsuch intense intensive
interventions like ECMO, wherethey have lost limbs as a result
of their care on theirexperience.
and you know, then we have womenwho've gone on and survived and
(12:54):
been able to actually, they'vehad their fertility intact and
been able to go on and haveanother child.
And so, you know, it really runsa pretty vast spectrum of the
impact.
In addition to that, we have tothink about those that are
providing the care and theimmense trauma that they have
when they have a patient thatgoes lifeless in front of their
eyes.
(13:14):
And sometimes they don't get theoutcome that they worked so hard
for.
So we did, we recognized prettyquickly 15 years ago that we as
a community embrace one anotherdespite whatever the outcome is,
where we have grievers andsurvivors that get together and
work on, you know, blood drivesand initiatives and connect, you
know, geographically, but werecognize the distinct
(13:35):
perspectives and people needinga space to find their people.
And so we do have several waysthat we support our, our
community.
One is through support guidesand giving very specific
resources and tools for them,but also our support groups.
So we have 10 Facebook supportgroups.
So we have those four, you know,grieving families, grieving
(13:56):
friends, widowers.
We have one for AFE survivors,AFE Survivors with infant loss,
AFE survivors that required ahysterectomy.
AFE survivors that required anecmo treatment.
We have AFE survivors who wannago on and have another child,
and then we have one for ourhealthcare providers.
So I think that and family offamily of survivors as well.
(14:16):
And so we really try andinitiate conversations that are
very specific to that outcomeand help them along their
journey so that they can findtheir people.
In addition to that, we foundthat you know, these groups can
be large and sometimes it'sreally hard to maybe find
someone that's close to you ineither geographic proximity or
(14:37):
share as many of the similarperspectives.
And so we created a directory aswell.
Directory has about 25 differentdata points that it collects,
and then we have a mentoringprogram where we can match
people based on similarperspectives that they might be
looking to connect with.
Then we also recognize thatduring, especially during Covid,
it became really Very clear thatwe had new AFE survivors that
(15:02):
could not get out and gettherapeutic services.
Didn't have an opportunity to goback to their hospitals and ask
questions or give gratitude.
Some of the grieving familiescouldn't have funerals.
And so we recognized there was areally unique need during that
time.
And we started our online Zoomsupport groups.
They're facilitated by clinicalsocial workers who are experts
(15:23):
in birth trauma.
And so we host these each weekfor different perspectives in
different groups.
Where it's an hour where you canmeet face-to-face.
AFE being so rare, there's not alot of, you know, any community
members in one particular state,let alone a city.
And so we really have tofunction in this virtual space
of creating genuine connectionthrough online.
(15:46):
And so I'm super grateful thatZoom and, Facebook FaceTime and
things like that exist so thatwe can connect a community that
had been isolated for decades.
And so support for us is just areal key initiative.
It's something that I don'tthink we could do this work
without it simply because it isso devastating and it's not just
in that moment of time or a fewyears later.
(16:07):
This is life-long.
And even 15 years out from myown experience, I can say that
on a regular basis, Icontinually reflect on what
happened to us and our familyand what's happened to others.
And so yes, we do a lot ofthings to support our community.
They're so very special to us.
Nicole (16:28):
You've done a really good job too of, and you know,
one of the things I had found,was going to an infant loss
support group.
There's so many differentreasons that people could be
there, but it's very hardsometimes to connect unless you
meet with someone that hasreally had the same experience
that you have had and how muchbeing able to connect with
others that really understandthe shoes that you're walking
(16:51):
in.
They've worn their own, they'veworn them down.
There might be on their secondpair, but they understand what
it's like and they're there aslike that mentorship role.
It's so important to have thatand what a amazing service that
you're offering.
Miranda (17:03):
Thank you.
It is very validating.
I think that's, it comes down tovalidating your experience and
as much as our family and ourfriends are so supportive of us
in these moments, like you said,being able to find someone else
who can look you in the eye andsay, I get it.
I think that's what's specialabout MoMMA's Voices too, is
even if it's not the exact sameshared perspective, I think we
(17:26):
all have expanded our hearts torecognize that despite the
reason for the trauma, thetrauma is real.
And you know, we don't do a goodjob in this country and, and
probably abroad of recognizingthe, the trauma that can occur
in the birth setting, inpregnancy setting.
Nicole (17:44):
A hundred percent.
We find those commonalities.
Mm-hmm.
what are some things, and wetalk about, you know, several
different things, but let's,let's kind of talk about some
positive shifts, some goodthings, and successes and wins
we see happening for somethingthat can be so terrible.
Miranda (18:01):
Oh yeah.
I think, you know, I, I thinksome of the biggest wins we've
had have been having a spacewhere families can go and have
hope.
We often talk about being alight to others, and I can't
think of anything moredevastating than this tragic
event happening and then turningaround and finding that there
was nobody there that was tryingto work on your behalf.
(18:21):
And so I think what I have seen,especially after the experience
of Covid, our community is sotight.
So I think the greatestachievement I have seen is being
able to see families in theirdarkest, darkest days and their
moments.
And then being able to see,nobody's ever like healed from
this, but they learn how to walkthat path.
And for them to be able to smileagain is probably my greatest
(18:44):
joy.
And, and hoping that we played atiny little role in that in
helping them have resilience andgiving them hope.
I think as someone who was, Ijust wanted to be a mom.
I just wanted to be a mom, andhere I have an organization.
I have an expansive family thatspans the globe of families that
(19:05):
we care deeply, deeply about andhave very rich relationships
with.
And then I think the fact that,you know, we've had this
opportunity to publish papersabout our experiences and that
we've put AFE on the map.
We have basically taken a ahorrible complication that
nobody knew anything about andsaid, Nope, you need to know
(19:26):
about this.
This is why it's important.
This is why you need, need to beprepared.
So the success I hear is when Ihear of healthcare providers
calling us in the middle of acode and saying, we know that
you can help.
Hearing back from healthcareproviders that say this resource
was so helpful to our team andwe think that it helps us save
(19:47):
this patient's life.
To hear families, to see womenwho, you know, who survived, go
on and have another child.
I mean, that, those are themoments when I know all the
blood, sweat, and tears havebeen worth it.
So I think the success has beenone that we're still here 15
years later, because I'll bevery honest, this is not a
(20:09):
household name.
And even though there's 4million births a year, and this
only happens to a hundred, wedon't know who this a hundred
will be.
So it could be any of those 4million people giving birth.
And I think that's what'schallenging is that from a
donation standpoint, we're notgetting a lot of donations that
come from the general public.
We're getting donations from ourcommunity.
And it's because hopefully ourcommunity sees our value and
(20:32):
sees what we've been able to doover the last 15 years.
And I'm, I am proud of it.
We still have a lot of work togo.
And so I think that we've, thatwe're still around is probably
our greatest success, that wecan continue to work on this
important and really needed,needed project.
We need to end AFE.
Nicole (20:51):
A hundred percent.
So true.
So what are some ways thatpeople can get involved, aside
from donating and making acontribution financially, what
are some other ways that peoplecan get involved with the AFE
Foundation?
Miranda (21:04):
Sure.
I'm so glad you asked, becauseit really isn't just about
donations and engagement, butit's really about providing a
place where anybody who's beenimpacted by AFE can find meaning
and and do meaningful work withtheir experience.
That's one of the things I loveso much about MoMMA's Voices as
we've shared.
Not only is it a great place forus as organizations to meet with
(21:26):
other organizational leaders andget best practices, but it's
really a hub for us to be ableto send our community members to
to learn the landscape ofmaternal health.
It's really complex.
It's more than just your OB/GYNand your nurses.
It goes beyond that.
It goes to hospitalorganizations, it goes to
stakeholders in your state thatare making decisions.
(21:47):
It goes to governmental agenciesthat are, working on legislation
that impact us.
And so one of the challengesthat we had in our community is
how, outside of just telling areally sad story.
What other ways can they sharetheir story that's effective,
that effectuates change?
Because I don't think we justneed to hear sad stories.
(22:08):
I think we actually need to beparticipatory and contribute,
and I think that's what MoMMA'sVoices does a good job with the
PFP training is that we can sendour community and, and that's
really a good gauge for us too,because a lot of people say,
Hey, I wanna do something.
And it's a really good step tosay.
Check out this training.
This training does so manythings.
(22:28):
I love that it does a quickassessment to assure that the
person's ready.
Sometimes we as moms who'vesurvived something like we're
quick to take action, right?
We wanna jump in headfirst andwe maybe haven't processed
everything that just happened.
So that's what I love about thePFP training, is it does this
assessment to make sure that youare actually ready for this.
(22:49):
And then in addition to that, ithelps translate the alphabet
soup of who all these playersare in the maternal health
space.
And then after that, it helpsyou refine your story and it
helps you identify ways that youactually can go out and
participate.
And then what I love aboutMoMMA's Voices is, is that if
there's not a place for us atthe AFE Foundation to utilize a
(23:10):
patient or provide, you know, apatient family partner, but
there are other opportunities intheir state that they can go out
and share their story andincrease awareness in that way.
So for us MoMMA's Voices and thePFP training is probably the
best way to get in to getstarted and identify where you
can use your talents to the bestand most meaningful way.
(23:31):
Well, thank you
Nicole (23:33):
so much for that plug.
We we take great pride in beingable to help people through
their healing journey.
And like you said, it's not thatyou ever become healed, but it
is a journey and people thathave come through it and said
how much it has really helpedthem to recognize that they
needed more healing.
And we wanna make sure that too,if someone's not ready, that is
a-okay, we want you to get whatyou need and not trying to put
(23:55):
you into a situation that willend up hurting you more in the
long run.
Miranda (24:01):
I always ask are we hoping or are we hurting?
Right?
Nicole (24:05):
So I have one last question to ask you, and this is
no mistake.
We did this totally on purposeon having this, this podcast
coming out because right aroundthe corner is AFE Awareness day,
and I know this is such aspecial day of the year, and
again, you work around the clockthis day with your community
that you really honor andrecognize and gain that
(24:25):
awareness about AFE.
What do you have planned forthis year?
Miranda (24:30):
Ah, this year is special.
You know, as we sort of comeacross and celebrate 15 years
AFE Awareness day really startedwith one dad, and it was one dad
who years before my ownexperience lost his beloved
wife.
And he lit a candle on the oneyear anniversary of her passing.
And he shared this in a smallcommunity, a Yahoo Group
(24:51):
community.
And I remember joining thatYahoo group shortly after my own
experience.
And I remember on that March27th that people from or really
around the globe were lightingcandles.
And I remember asking andsaying, well, how did this
begin?
And they said, oh, it was a dad.
And he started this.
But I never knew the dad'sstory, the dad's name, nothing.
(25:13):
And so a few years ago we well,let me back up.
So when I started theorganization and I recognized
that this was something that hadhappened prior to the beginning
of our organization, I thought,you know what?
I wanna honor that experience.
It's a beautiful way to rememberthose whose lives have been
lost, but also encompass thosewhose lives have been impacted
(25:34):
as well and really honor thattime.
And so we decided that March27th, that started with this,
dad would become AFE awarenessday.
And over the years it's grownfrom you know buying a t-shirt
and, and wearing your t-shirtthat day to sharing your story
to actionable items like, youknow, downloading and, and
sharing some of our education orsharing on social media.
(25:58):
We've had a lot of people startblood drives on these days, and
so it's really just grown overthe years.
But I remember a few years agowe started to do a virtual
candlelight vigil.
So we weren't just asking ourcommunity to light candles, we
were then simulcasting a livecandlelight vigil.
And each year it's grown andit's one of the most touching
experiences to, to do it.
(26:18):
And we, we kept it at the exactsame time at nine 15 Eastern
when this dad started to lighthis candle so many years ago.
And to watch as people from allover the world tune in and say
where they are, where they'relocated, and how they're
connected to our cause.
It's, it's really touching.
And so this year we'll be doingthe same where we'll be having
our live candlelight vigil thisyear.
(26:40):
I'm excited.
We have a guest cellist who willbe playing live music as well.
And, I remember a few years agomy phone rang after one of these
live simulcast candlelightvigils.
I was sort of surprised cuz itwas late in the evening and I
picked up the phone and it was,It was Danny.
It was Danny Bell, he was thedad.
(27:01):
It, it was his daughter's 16thbirthday.
And he you know, had tucked herin that night and he thought,
gosh, I wonder if anything haschanged about AFE since I last
looked 15 years before.
He had sort of stepped away andhe just wanted to know.
Have they learned anything?
Have they figured it out?
And he stumbled across ourwebsite.
He stumbled across our socialmedia feed, and he was calling,
(27:23):
I don't think he was expectinganybody to answer the phone.
He wanted to know why was itreally AFE awareness date and
why on March 27th?
And so when I picked up thephone and he asked, can I ask
why it's today?
And I said, it's because a dadstarted this many years ago.
I don't know him.
(27:43):
But we wanted to honor hisexperience and the phone got
really quiet and he told me itwas him.
And after that moment we'vebuilt a special bond and I've
actually flown out to see him inCape Cod where he, he lives.
And you know, we talk everyyear.
And so AFE Awareness day is, isreally about him.
It's it's really about one dadwho started something and we
(28:05):
embraced it and carried itthroughout.
So AFE Awareness day is aspecial day for us, and we will
never change that day.
We will never change the time wedo our candlelight vigil.
But it really has morphed andit's really a day for everyone
to many of those in ourcommunity, especially AFE
survivors use this as their dayto process.
They use it as their day toacknowledge what's happened to
(28:26):
them so that they can save theday of a birth of a child as a
special day, as a celebratoryday and it's especially, you
know, somber for those who'velost a child on that day as
well.
And so I think it, it reallyjust embraces everyone.
It really connects everyonethat's, it's, it's been impacted
(28:47):
by, so it is a long day.
We've done so many differentthings over the years.
But it's, it's special and it'ssomething that our community has
embraced as well.
And I'm so, so glad that Dannyand his family can honor their
Lisa in such an expansive way.
I
Nicole (29:04):
never heard that story from you before, but that's
amazing to hear and how smallthe world can become sometimes.
Now, where will the candlelightvigil be this year?
Is it on Facebook?
Where's it gonna be?
Miranda (29:13):
Streaming?
Yep.
Facebook Live.
So you just go to our Facebookpage and we invite all of our
community and, and our MoMMA'sVoices community and partners in
this space to join in if, ifthey've lost loved ones.
It's, it's a candlelight vigil.
It's not just for AFE.
It's, it's really for us to allacknowledge our experiences.
I'm very careful about thisyear.
Nicole (29:33):
So that will be March 27th at 9:15 PM Eastern on the
AFE Foundation's Facebook page.
They will be having that.
So make sure to tune in.
It is always something specialto be able to witness and
participate in.
Yes.
Thank you Nicole.
We hope this has been a helpfulepisode of our Power of MoMMA's
Voices podcast to get to knoworganizational leader at Miranda
(29:55):
Klassen at the AFE Foundation.
Remember, we'll be putting on anepisode every other week and
we'll rotate between patientstories, other organization
highlights and engagementsuccess stories.
This podcast is availablewherever you get your podcast or
on our website@mamasvoices.orgslash podcast.
Hello and welcome to today's episode of The Power of
MoMMA's Voices, where we'll besitting down with Miranda
Klassen.
Miranda is an amniotic fluidembolism, our AFE survivor who
founded the AFE Foundation,three months after her recovery
from her AFE, she now serves asthe executive director of the
AFE Foundation.
Her passion for AFE awarenesscontinues and her assistance in
(00:21):
the development andimplementation of the Amniotic
Fluid Embolism Registry, whichserves the world's largest
database of a F E cases.
Miranda, thank you so much forbeing here today.
The Power of Norma's Voicespodcast was started to help
support patients with livedexperiences.
So would you start off bytelling us a little bit about
your story and what led you tobringing this greater mission of
(00:42):
awareness and support for othersthat have had an AFE.
Miranda (00:45):
Sure.
Well, first, thank you so muchfor having me, Nicole.
I'm so appreciative of allyou've done to really lead
MoMMA's Voices and give patientsa place where they can come and
learn more about the maternalhealth space and do advocacy
work and, and share theirstories in such meaningful ways.
As you already shared, I had anunexpected birth complication
(01:06):
during the birth of our son, andthis complication is one.
that's unpreventable.
It's unpredictable anduntreatable.
It was definitely not on myradar at all.
My story, like I think manyother stories begins with just
wanting to have a family,wanting to have children, and
really start that journey andthat part of our married life
together with my husband mypregnancy.
(01:28):
uncomplicated.
I had a few small minor bumpsalong the way, but nothing that
would change the course ofdelivery.
And like I said, amniotic fluidembolism wasn't anywhere in the
books.
I had never heard of it.
I had no idea that this couldeven happen to women during
birth.
But shortly into my laboringprocess, I began to share with
my nurse that I wasn't feelingright, something felt off.
(01:50):
I became increasingly anxiousand over the course of a few
minutes, went from being able totalk and you know, labor to not
being able to catch my breath,and then suddenly had a seizure
and went into cardiac arrest.
The team quickly recognizedthese symptoms and took me to
the main operating room where Ihad an emergency c-section and
(02:13):
they delivered our son, who wasalso unresponsive and brought
him back, and then shortly afterhis delivery recognized that I
was having a pretty significanthemorrhage.
It's different than a postpartumhemorrhage.
It's called disseminatedintravascular coagulopathy, or
DIC.
And it's essentially when theblood has used all of its
(02:34):
clotting factors and runs out,and so you start to bleed and
it's very complex.
It's very difficult to treat.
So I went from, you know,talking and being excited about
birth to having a cardiac arrestrequiring CPR.
Emergently delivering my son andgiving CPR to him and then
having a pretty significantbleeding episode that required
(02:56):
20 units of product and wasplaced in a medically induced
coma.
I wasn't able to meet my son fora few days, and I remember
coming out of that experienceand trying to wrap my head
around what had happened.
That I had actually given birththat my son was okay, and trying
to process the words amniotic,fluid embolism.
(03:18):
I had never heard of it and Iwasn't in medicine, so these
were really complex words and Ijust couldn't grasp what had
happened, and I asked a lot ofquestions after being extubated.
and that continued as I was ableto go home.
Once I went home, you know, thiswas in 2008 and so Google had
just really start, we started touse the word, you know, the term
(03:39):
Google it.
Facebook had just gotten startedand I went home and tried to
research on the computer andvery little came up.
And so I was surprised by that.
So fast forward a few months, Idecided I wanted to go to the
library and see if there was alittle bit more in the medical
journals that I could find.
And what I found there confirmedthis was incredibly fatal.
(04:01):
We were incredibly lucky andblessed.
And that same search in thelibrary, I thought surely if
there are women dying inchildbirth, there should be an
organization that supports that.
And I was surprised to findthere wasn't the need was so
incredibly great and it was sortof there in that library the day
before my birthday in July thatI thought, this is what I was
(04:23):
meant to do and to be a voicefor those, who no longer had a
voice.
And to really help researchersuncover some of the clues around
this, because despite it beingaround for a hundred years
There's very littleunderstanding of it and I wanted
to change that.
Well, thank
Nicole (04:41):
you for sharing.
I think that's something toothat a lot of folks that have
had, you know, birth trauma andcomplicated deliveries and
pregnancies, there's a couplethings that we share.
And so some of them are, youknow, oftentimes there's need
for blood products andhemorrhaging and DIC and I had
somebody joke with me, theyknow, oh, that stands for death
is certain.
And it's just, it, it is commoneven though it's not out in the
(05:01):
world.
It's something that, connectsmany of us in this community.
And I know you, you do so muchfor that.
And I know when I first met you,I'd never heard of AFE either.
And even though we have haddifferent experiences to find
where there's that commonground.
And that's really so much ofwhat MoMMA's Voices is about
too, is finding thoseconnections in all of us,
getting behind them and pushingto make change happen.
(05:24):
So what are some other thingsthat, you know, projects that
you're working on on the AFEFoundation?
I know you're super busy and allover the place.
So what are some things thatyou're excited that you're
working on right now?
Miranda (05:34):
Sure.
Well the three main initiativesthat the foundation has is,
Promoting.
Education, advancing researchand offering support to those
who've been impacted by AFE.
We've done I think we've done apretty good job over the last 15
years of really embracing ourcommunity and wrapping our
virtual arms around them andproviding a lot of support and,
(05:55):
you know, we can touch upon thatif that's of interest later.
But really the top two things Ithink that are gonna move the
needle on this is understandingthe etiology, the cause of the
condition.
And that really comes down toresearch.
So when we talk about advancingresearch, like I said, AFEs been
around, it was first describedin Brazilian literature in 1926,
and here we were, it was 2008,and very little had been you
(06:19):
know, understood.
Very little had been learnedsince that point.
And so recognizing that wereally needed to say, Hey, if I
survived and there are othersurvivors, what could we learn
from women who've survived this?
Because the women who have beenlost to it, you know, they can't
necessarily contribute toresearch anymore.
What can we learn from theircases?
(06:40):
What can we learn from survivingwomen and children who've gone
through this?
And so I reached out to, when Istarted the organization,
reached out to some of the topresearchers and, Educators in
this space and so grateful tohave them.
So one of the biggest projectswe have is our AFE registry and
biorepository.
The registry in and of itself isessentially a retrospective
(07:02):
review of cases.
So if there's any, anyone that'sout there that's had either an
AFE experience themselves orlost a loved one to AFE, they
can submit their case on ourwebsite.
And what we do is we collect allthe medical records.
Review those medical records andwe're catching 650 data points
that we're examining.
And then that case getsde-identified and then it, we
(07:24):
can send out those data pointsto researchers to look for
commonalities in treatment orage or demographics or
perspectives.
And so we've amassed the largestregistry really in the world and
have had 11 publications, whichI'm incredibly proud of.
In addition to that is ourbiorepository.
The biorepository is somethingthat we know.
We can review cases, you know,another a hundred years, and I
(07:46):
don't think we'd be able touncover the etiology or the
cause of the condition.
The biorepository allows us totake specimens, real-time
specimens from women who this isoccurring even though it happens
very acutely and unexpectedly.
The training that we do with ourhealthcare providers to know
that they can contribute to ourresearch by collecting these
specimen.
when an event is occurring andthese specimens can be processed
(08:09):
in the hospitals and then sentto our biorepository so that we
can share these with researcherswho are really diving into what
causes this event.
It's an allergic like reaction.
So we're looking at cytokinesand we're looking at
metabolomics and, andproteomics.
We're really trying to drive into see if there's any way we
could predict which women thiswill impact.
(08:30):
Just to put it in perspective,there's 4 million births a year
and one in 40,000 will becomplicated with an amniotic
fluid embolism.
So you're looking at about ahundred women a year that this
could potentially happen to witha fatality rate of up to 60,
70%.
You're looking at a prettysignificant number of women who
are passing away from this.
So this biorepository, webelieve is the next step for
(08:53):
really uncovering the crucialinformation that we need to be
able to predict this and to beable to actually treat it.
Our healthcare providers arereally put in a hard place when
you have a woman that goes intocardiac arrest during labor or
shortly thereafter, and then hassignificant, as you said, death
is certain.
With the bleeding episode.
And so really healthcareproviders are only left to treat
(09:14):
the symptoms they see in frontof them.
They actually can't and don'tknow what they can do to treat
the actual inciting event, whichis probably very similar to an
allergic like reaction.
So our registry and ourbiorepository, I think, are two
greatest initiatives that webelieve will help solve this
medical puzzle to couple thatwith our education.
(09:38):
Until we uncover what the causeof AFE is, all we're left with
is trying to help clinicians andequipping clinicians to be ready
to understand how to recognizeearly signs and symptoms, and
how to treat and manage thatpatient.
Or wrap our arms around thosethat it's impacted.
So our education is somethingthat we've been working very
(09:59):
hard on the last 12 months.
We have a new online course thatwe're ready to launch.
We've teamed with clinicalconcepts and obstetrics one of
the leading educators in thismaternal health space to provide
an online on-demand course thatwill take them sort of
soup-to-nuts, everything thatyou need to know about amniotic
fluid embolism.
And then the coupling that with,once we give them the knowledge
(10:22):
and translate that knowledge,then we wanna give practical
application to that knowledge bydoing simulation and deliberate
practice.
And so we are also ready tounveil a very comprehensive and
exhaustive simulation toolkit,which is really designed for
hospitals from low resourcehospitals to very high resource
university setting researchsetting hospitals and to, they
(10:44):
can increase fidelity of thesimulation as much as they're
able.
But these two products, if youwill, this online course and the
simulation toolkit, I believewill be some of the best ways we
can effectuate and translateknowledge through those learning
styles.
Excellent.
Nicole (11:00):
Thank you so much.
And one of the things youtouched on there too, just the
fatality rate is so great and,what that leaves behind it
leaves behind, you know,families that are traumatized.
It leaves behind families thatare grieving.
It leaves behind families thathave survivor guilt and why did
I make it through this?
Or why do we make it throughthis?
And someone else didn't.
(11:21):
And also has a great impact onthe clinicians as well.
And I, I know you do such anamazing job.
I can't even say taking'em underyour wing.
Like you take them into yourarms and hold them close to your
heart and they become yourpeople and your family and you
just do an amazing job at that.
And I know you're not the onlyone.
You have worked on creatingsupport groups because you know,
(11:42):
you can only do so much, but youhave to spread that out.
So can you tell us a little bitmore about the support groups
that you guys offer.
Miranda (11:49):
Absolutely.
And thank you so much.
That's, that means so much to mecuz that really was the
inspiration, and I probablyshould have shared when I was
there at the library that day inmy search came up an obituary
for a woman that looked verysimilar to me and, both her and
her son perished.
They were lost the week before Ihad Van, my son.
(12:11):
I will never forget Jenny, andBroden.
And they were the inspiration todo this.
And so I think very early on,recognizing that families had,
you know, a variety of outcomesand we do, we have so many
different outcomes that happenas a result of this critical
event.
So we have, as you shared,families that are grieving a
loss of a wife, a daughter, asibling.
We have those grieving, the lossof a child.
(12:33):
So you have a woman who's had anexperience and survived, but her
baby didn't survive.
We have women who have requiredsuch intense intensive
interventions like ECMO, wherethey have lost limbs as a result
of their care on theirexperience.
and you know, then we have womenwho've gone on and survived and
(12:54):
been able to actually, they'vehad their fertility intact and
been able to go on and haveanother child.
And so, you know, it really runsa pretty vast spectrum of the
impact.
In addition to that, we have tothink about those that are
providing the care and theimmense trauma that they have
when they have a patient thatgoes lifeless in front of their
eyes.
(13:14):
And sometimes they don't get theoutcome that they worked so hard
for.
So we did, we recognized prettyquickly 15 years ago that we as
a community embrace one anotherdespite whatever the outcome is,
where we have grievers andsurvivors that get together and
work on, you know, blood drivesand initiatives and connect, you
know, geographically, but werecognize the distinct
(13:35):
perspectives and people needinga space to find their people.
And so we do have several waysthat we support our, our
community.
One is through support guidesand giving very specific
resources and tools for them,but also our support groups.
So we have 10 Facebook supportgroups.
So we have those four, you know,grieving families, grieving
(13:56):
friends, widowers.
We have one for AFE survivors,AFE Survivors with infant loss,
AFE survivors that required ahysterectomy.
AFE survivors that required anecmo treatment.
We have AFE survivors who wannago on and have another child,
and then we have one for ourhealthcare providers.
So I think that and family offamily of survivors as well.
(14:16):
And so we really try andinitiate conversations that are
very specific to that outcomeand help them along their
journey so that they can findtheir people.
In addition to that, we foundthat you know, these groups can
be large and sometimes it'sreally hard to maybe find
someone that's close to you ineither geographic proximity or
(14:37):
share as many of the similarperspectives.
And so we created a directory aswell.
Directory has about 25 differentdata points that it collects,
and then we have a mentoringprogram where we can match
people based on similarperspectives that they might be
looking to connect with.
Then we also recognize thatduring, especially during Covid,
it became really Very clear thatwe had new AFE survivors that
(15:02):
could not get out and gettherapeutic services.
Didn't have an opportunity to goback to their hospitals and ask
questions or give gratitude.
Some of the grieving familiescouldn't have funerals.
And so we recognized there was areally unique need during that
time.
And we started our online Zoomsupport groups.
They're facilitated by clinicalsocial workers who are experts
(15:23):
in birth trauma.
And so we host these each weekfor different perspectives in
different groups.
Where it's an hour where you canmeet face-to-face.
AFE being so rare, there's not alot of, you know, any community
members in one particular state,let alone a city.
And so we really have tofunction in this virtual space
of creating genuine connectionthrough online.
(15:46):
And so I'm super grateful thatZoom and, Facebook FaceTime and
things like that exist so thatwe can connect a community that
had been isolated for decades.
And so support for us is just areal key initiative.
It's something that I don'tthink we could do this work
without it simply because it isso devastating and it's not just
in that moment of time or a fewyears later.
(16:07):
This is life-long.
And even 15 years out from myown experience, I can say that
on a regular basis, Icontinually reflect on what
happened to us and our familyand what's happened to others.
And so yes, we do a lot ofthings to support our community.
They're so very special to us.
Nicole (16:28):
You've done a really good job too of, and you know,
one of the things I had found,was going to an infant loss
support group.
There's so many differentreasons that people could be
there, but it's very hardsometimes to connect unless you
meet with someone that hasreally had the same experience
that you have had and how muchbeing able to connect with
others that really understandthe shoes that you're walking
(16:51):
in.
They've worn their own, they'veworn them down.
There might be on their secondpair, but they understand what
it's like and they're there aslike that mentorship role.
It's so important to have thatand what a amazing service that
you're offering.
Miranda (17:03):
Thank you.
It is very validating.
I think that's, it comes down tovalidating your experience and
as much as our family and ourfriends are so supportive of us
in these moments, like you said,being able to find someone else
who can look you in the eye andsay, I get it.
I think that's what's specialabout MoMMA's Voices too, is
even if it's not the exact sameshared perspective, I think we
(17:26):
all have expanded our hearts torecognize that despite the
reason for the trauma, thetrauma is real.
And you know, we don't do a goodjob in this country and, and
probably abroad of recognizingthe, the trauma that can occur
in the birth setting, inpregnancy setting.
Nicole (17:44):
A hundred percent.
We find those commonalities.
Mm-hmm.
what are some things, and wetalk about, you know, several
different things, but let's,let's kind of talk about some
positive shifts, some goodthings, and successes and wins
we see happening for somethingthat can be so terrible.
Miranda (18:01):
Oh yeah.
I think, you know, I, I thinksome of the biggest wins we've
had have been having a spacewhere families can go and have
hope.
We often talk about being alight to others, and I can't
think of anything moredevastating than this tragic
event happening and then turningaround and finding that there
was nobody there that was tryingto work on your behalf.
(18:21):
And so I think what I have seen,especially after the experience
of Covid, our community is sotight.
So I think the greatestachievement I have seen is being
able to see families in theirdarkest, darkest days and their
moments.
And then being able to see,nobody's ever like healed from
this, but they learn how to walkthat path.
And for them to be able to smileagain is probably my greatest
(18:44):
joy.
And, and hoping that we played atiny little role in that in
helping them have resilience andgiving them hope.
I think as someone who was, Ijust wanted to be a mom.
I just wanted to be a mom, andhere I have an organization.
I have an expansive family thatspans the globe of families that
(19:05):
we care deeply, deeply about andhave very rich relationships
with.
And then I think the fact that,you know, we've had this
opportunity to publish papersabout our experiences and that
we've put AFE on the map.
We have basically taken a ahorrible complication that
nobody knew anything about andsaid, Nope, you need to know
(19:26):
about this.
This is why it's important.
This is why you need, need to beprepared.
So the success I hear is when Ihear of healthcare providers
calling us in the middle of acode and saying, we know that
you can help.
Hearing back from healthcareproviders that say this resource
was so helpful to our team andwe think that it helps us save
(19:47):
this patient's life.
To hear families, to see womenwho, you know, who survived, go
on and have another child.
I mean, that, those are themoments when I know all the
blood, sweat, and tears havebeen worth it.
So I think the success has beenone that we're still here 15
years later, because I'll bevery honest, this is not a
(20:09):
household name.
And even though there's 4million births a year, and this
only happens to a hundred, wedon't know who this a hundred
will be.
So it could be any of those 4million people giving birth.
And I think that's what'schallenging is that from a
donation standpoint, we're notgetting a lot of donations that
come from the general public.
We're getting donations from ourcommunity.
And it's because hopefully ourcommunity sees our value and
(20:32):
sees what we've been able to doover the last 15 years.
And I'm, I am proud of it.
We still have a lot of work togo.
And so I think that we've, thatwe're still around is probably
our greatest success, that wecan continue to work on this
important and really needed,needed project.
We need to end AFE.
Nicole (20:51):
A hundred percent.
So true.
So what are some ways thatpeople can get involved, aside
from donating and making acontribution financially, what
are some other ways that peoplecan get involved with the AFE
Foundation?
Miranda (21:04):
Sure.
I'm so glad you asked, becauseit really isn't just about
donations and engagement, butit's really about providing a
place where anybody who's beenimpacted by AFE can find meaning
and and do meaningful work withtheir experience.
That's one of the things I loveso much about MoMMA's Voices as
we've shared.
Not only is it a great place forus as organizations to meet with
(21:26):
other organizational leaders andget best practices, but it's
really a hub for us to be ableto send our community members to
to learn the landscape ofmaternal health.
It's really complex.
It's more than just your OB/GYNand your nurses.
It goes beyond that.
It goes to hospitalorganizations, it goes to
stakeholders in your state thatare making decisions.
(21:47):
It goes to governmental agenciesthat are, working on legislation
that impact us.
And so one of the challengesthat we had in our community is
how, outside of just telling areally sad story.
What other ways can they sharetheir story that's effective,
that effectuates change?
Because I don't think we justneed to hear sad stories.
(22:08):
I think we actually need to beparticipatory and contribute,
and I think that's what MoMMA'sVoices does a good job with the
PFP training is that we can sendour community and, and that's
really a good gauge for us too,because a lot of people say,
Hey, I wanna do something.
And it's a really good step tosay.
Check out this training.
This training does so manythings.
(22:28):
I love that it does a quickassessment to assure that the
person's ready.
Sometimes we as moms who'vesurvived something like we're
quick to take action, right?
We wanna jump in headfirst andwe maybe haven't processed
everything that just happened.
So that's what I love about thePFP training, is it does this
assessment to make sure that youare actually ready for this.
(22:49):
And then in addition to that, ithelps translate the alphabet
soup of who all these playersare in the maternal health
space.
And then after that, it helpsyou refine your story and it
helps you identify ways that youactually can go out and
participate.
And then what I love aboutMoMMA's Voices is, is that if
there's not a place for us atthe AFE Foundation to utilize a
(23:10):
patient or provide, you know, apatient family partner, but
there are other opportunities intheir state that they can go out
and share their story andincrease awareness in that way.
So for us MoMMA's Voices and thePFP training is probably the
best way to get in to getstarted and identify where you
can use your talents to the bestand most meaningful way.
(23:31):
Well, thank you
Nicole (23:33):
so much for that plug.
We we take great pride in beingable to help people through
their healing journey.
And like you said, it's not thatyou ever become healed, but it
is a journey and people thathave come through it and said
how much it has really helpedthem to recognize that they
needed more healing.
And we wanna make sure that too,if someone's not ready, that is
a-okay, we want you to get whatyou need and not trying to put
(23:55):
you into a situation that willend up hurting you more in the
long run.
Miranda (24:01):
I always ask are we hoping or are we hurting?
Right?
Nicole (24:05):
So I have one last question to ask you, and this is
no mistake.
We did this totally on purposeon having this, this podcast
coming out because right aroundthe corner is AFE Awareness day,
and I know this is such aspecial day of the year, and
again, you work around the clockthis day with your community
that you really honor andrecognize and gain that
(24:25):
awareness about AFE.
What do you have planned forthis year?
Miranda (24:30):
Ah, this year is special.
You know, as we sort of comeacross and celebrate 15 years
AFE Awareness day really startedwith one dad, and it was one dad
who years before my ownexperience lost his beloved
wife.
And he lit a candle on the oneyear anniversary of her passing.
And he shared this in a smallcommunity, a Yahoo Group
(24:51):
community.
And I remember joining thatYahoo group shortly after my own
experience.
And I remember on that March27th that people from or really
around the globe were lightingcandles.
And I remember asking andsaying, well, how did this
begin?
And they said, oh, it was a dad.
And he started this.
But I never knew the dad'sstory, the dad's name, nothing.
(25:13):
And so a few years ago we well,let me back up.
So when I started theorganization and I recognized
that this was something that hadhappened prior to the beginning
of our organization, I thought,you know what?
I wanna honor that experience.
It's a beautiful way to rememberthose whose lives have been
lost, but also encompass thosewhose lives have been impacted
(25:34):
as well and really honor thattime.
And so we decided that March27th, that started with this,
dad would become AFE awarenessday.
And over the years it's grownfrom you know buying a t-shirt
and, and wearing your t-shirtthat day to sharing your story
to actionable items like, youknow, downloading and, and
sharing some of our education orsharing on social media.
(25:58):
We've had a lot of people startblood drives on these days, and
so it's really just grown overthe years.
But I remember a few years agowe started to do a virtual
candlelight vigil.
So we weren't just asking ourcommunity to light candles, we
were then simulcasting a livecandlelight vigil.
And each year it's grown andit's one of the most touching
experiences to, to do it.
(26:18):
And we, we kept it at the exactsame time at nine 15 Eastern
when this dad started to lighthis candle so many years ago.
And to watch as people from allover the world tune in and say
where they are, where they'relocated, and how they're
connected to our cause.
It's, it's really touching.
And so this year we'll be doingthe same where we'll be having
our live candlelight vigil thisyear.
(26:40):
I'm excited.
We have a guest cellist who willbe playing live music as well.
And, I remember a few years agomy phone rang after one of these
live simulcast candlelightvigils.
I was sort of surprised cuz itwas late in the evening and I
picked up the phone and it was,It was Danny.
It was Danny Bell, he was thedad.
(27:01):
It, it was his daughter's 16thbirthday.
And he you know, had tucked herin that night and he thought,
gosh, I wonder if anything haschanged about AFE since I last
looked 15 years before.
He had sort of stepped away andhe just wanted to know.
Have they learned anything?
Have they figured it out?
And he stumbled across ourwebsite.
He stumbled across our socialmedia feed, and he was calling,
(27:23):
I don't think he was expectinganybody to answer the phone.
He wanted to know why was itreally AFE awareness date and
why on March 27th?
And so when I picked up thephone and he asked, can I ask
why it's today?
And I said, it's because a dadstarted this many years ago.
I don't know him.
(27:43):
But we wanted to honor hisexperience and the phone got
really quiet and he told me itwas him.
And after that moment we'vebuilt a special bond and I've
actually flown out to see him inCape Cod where he, he lives.
And you know, we talk everyyear.
And so AFE Awareness day is, isreally about him.
It's it's really about one dadwho started something and we
(28:05):
embraced it and carried itthroughout.
So AFE Awareness day is aspecial day for us, and we will
never change that day.
We will never change the time wedo our candlelight vigil.
But it really has morphed andit's really a day for everyone
to many of those in ourcommunity, especially AFE
survivors use this as their dayto process.
They use it as their day toacknowledge what's happened to
(28:26):
them so that they can save theday of a birth of a child as a
special day, as a celebratoryday and it's especially, you
know, somber for those who'velost a child on that day as
well.
And so I think it, it reallyjust embraces everyone.
It really connects everyonethat's, it's, it's been impacted
(28:47):
by, so it is a long day.
We've done so many differentthings over the years.
But it's, it's special and it'ssomething that our community has
embraced as well.
And I'm so, so glad that Dannyand his family can honor their
Lisa in such an expansive way.
I
Nicole (29:04):
never heard that story from you before, but that's
amazing to hear and how smallthe world can become sometimes.
Now, where will the candlelightvigil be this year?
Is it on Facebook?
Where's it gonna be?
Miranda (29:13):
Streaming?
Yep.
Facebook Live.
So you just go to our Facebookpage and we invite all of our
community and, and our MoMMA'sVoices community and partners in
this space to join in if, ifthey've lost loved ones.
It's, it's a candlelight vigil.
It's not just for AFE.
It's, it's really for us to allacknowledge our experiences.
I'm very careful about thisyear.
Nicole (29:33):
So that will be March 27th at 9:15 PM Eastern on the
AFE Foundation's Facebook page.
They will be having that.
So make sure to tune in.
It is always something specialto be able to witness and
participate in.
Yes.
Thank you Nicole.
We hope this has been a helpfulepisode of our Power of MoMMA's
Voices podcast to get to knoworganizational leader at Miranda
(29:55):
Klassen at the AFE Foundation.
Remember, we'll be putting on anepisode every other week and
we'll rotate between patientstories, other organization
highlights and engagementsuccess stories.
This podcast is availablewherever you get your podcast or
on our website@mamasvoices.orgslash podcast.
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