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January 10, 2023 20 mins

Power of MoMMAs Voices is a platform for those using their “mom voice,” and those who support them, to create change and improvements in maternal health.
 
Episode 1: Welcome to Power of MoMMAs Voices! In this first podcast join us to meet the team. Hear about our personal stories and the life-changing work that MoMMAs Voices is engaged in. Our Podcast journey begins here!

About MoMMAs Voices
MoMMAs Voices (Maternal Mortality & Morbidity Advocates) is the first-ever maternal health patient advocates program bringing together real patient and family voices. We're made up of dozens of maternal health organizations who represent all types of maternal health conditions, as well as cross-cutting topics like maternal mental health, racial equity, healthcare delivery, and patient-provider partnership. We sit at the center of maternal health improvements, connecting and training patients with lived experiences, providers, quality improvement leaders, researchers, and policymakers to move forward improvements in maternal care. We are a program of the Preeclampsia Foundation.

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Episode Transcript

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Nicole (00:00):
Hi, my name is Nicole Purnell and I am the program
director for MoMMAs Voices.
I have a lived experience withpreeclampsia help and infant
loss, and I really got startedas a volunteer with the
Preeclampsia Foundation.
Shortly after the loss of myson and just worked with them
and, and raised funds and raisedawareness and talked with

(00:21):
people.
And my passion was to helppeople to walk through that pain
and walk through that dark sideand to see that they can find
purpose in what their experiencewas.
And it just so happened thatabout the time I was pulling my
hair out with my corporate job,I just.
Threw it out there like, Hey,if you'll have anything that
you're hiring for keep me inmind.

(00:43):
And just so happened that theyhad just got funding to start
the coalition as it was in thevery early days, and were ready
to bring on a project managerfor that.
So I was lucky and the timingall worked out that I started on
staff at the PreeclampsiaFoundation back in October of
2018 as a program manager forMoMMAs Voices and MoMMAs Voices

(01:04):
really started with this ideaand this thought that there are
a lot of small organizationsthat are out there and we all
have a place and a voice, andnot everybody's getting seats at
the table.
And so how can we come togetherand bring all of these voices,
all of the organizations, All ofthe people that need to be
heard and, and have a place howcan we elevate them and amplify

(01:24):
them and find those seats andworking together, unify our
voices to be even more powerfuland more heard.
And so that's really how MoMMAsVoices got started, is just
looking at how we can worktogether and help everybody in
the same or differentcircumstances, but where we can
find those universal threads andwhere we can all come together
and join to have more.

Bekah (01:47):
My name is Bekah Bischoff.
I'm a two-time pre-eclampsiasurvivor and developed help
syndrome with my second child,nearly dying in delivery in
2012.
In 2016, so four years later, Isubmitted my story to an
investigative reporter who wastrying to figure out women who

(02:09):
had had pregnancy complicationsand wanted to share their story,
and I submitted it and Ithought, I'm never gonna get a
call back.
I thought I survived.
My baby survived.
I don't have a story.
And then I learned that I didhave this really powerful story.
I was able to be a part of U Susa, today's Deadly Delivery
series that finally aired backin 2018.

(02:32):
And I got involved in policywork.
I learned that this was notrare at all, and that.
Were dying or nearly dying atalarming rates.
I was also able to identify andheal that I had suffered in
silence from postpartum anxietyand depression after

(02:53):
experiencing this traumaticbirth experience that I never
talked about.
And I got to thinking if I havethis powerful story that I
didn't even think I had and hadto suffer in silence all these
years, there have to be so manyother women who are just like
me.
And so I got involved inanything that I could be a part

(03:14):
of and finally found my way.
To MoMMAs Voices.
Met Nicole in 2018 at thelaunch of the MoMMAs Voices
Coalition and just continued tostay involved and do anything
that I could.
And after spending over adecade as a kindergarten
teacher, I was able totransition to working here as

(03:34):
the education and developmentCoordinator.
And it's so beautiful to seehow some of the.
Pains that we all carry andexperience can turn into such
beauty if we allow it, and I'mjust so happy to be a part of
such an amazing team.

Emily (03:50):
Hello, my name is Emily Taylor.
I experienced an amniotic fluidembolism after my water broke.
During the pregnancy of myfirst child, my daughter and I
had a near death experience onwhat was supposed to be the
happiest day of our lives.
I coded for two minutes and hadmultiple organ failure.
When I woke up in the ICU fourdays later, I was grateful to be

(04:13):
alive, but couldn't stop askingthe question, why did this
happen to me?
I had extreme mom guilt afterputting my child through such
trauma.
I couldn't breastfeed and Icouldn't even hold her when we
got.
This led me to reach out to theAFE Foundation and find out as
much as I could about thiscondition.

(04:35):
I decided to advocate for othermothers who went through an AFE
and other women who didn'texperience the birth they had
hoped for.
I was introduced to MoMMAsVoices, patient, family partner
training, and it really changedmy life.
I was able to heal, becomeempowered, and find ways to get.
I currently work on engagementsthrough a matchmaking process

(04:59):
with providers and patients, andoutreach with other
organizations.
I was in the patient engagementrealm before coming to MoMMAs
Voices, so it's always been mypassion and I'm really excited
to be able to do it with mothersgoing through a traumatic
experience.
I'm so excited to be here withyou all.

Mandi (05:19):
Hi everyone.
I'm Mandy Gross.
I'm a patient family partnerand the administrative
coordinator for MoMMAs Voices.
Nine years ago after the birthof my daughter, I woke up with
the worst headache I'd everfelt.
We rushed to a standalone erwhere I stayed in pain and
undiagnosed for hours while theyran tests.
Diagnos diagnostic tests beforeI was transferred via ambulance

(05:42):
to the full service hospital toactually get a diagnosis.
My doctors did not haveprivileges at that hospital.
I didn't know anyone there.
They finally diagnosed me withpostpartum preeclampsia.
I ended up staying in thathospital on a magnesium drip.
Was subsequently released withno medication, only to be
readmitted 24 hours later, andthey repeated the course of

(06:04):
treatment and then I wasdischarged with medication.
This whole incident createdPTSD, postpartum depression,
anxiety, OCD.
Lots of different maternalmental health issues that I was
completely unaware of until Ifound mama's Voices and the
preeclampsia Foundation.
I got into the advocacy when Isaw a Preeclampsia Foundation

(06:30):
and MoMMAs Voices webinar, andit made me feel like that was
truly my calling.
I became a PFP.
And later joined the MoMMAsVoices team and it's changed my
life.
And while I'm not happy thatany of us have had maternal
health problems and issues, Ifeel blessed to be part of this
community of incredible, strongand supportive people, and to be

(06:51):
able to use my story to helpothers.

Nicole (06:54):
And now that you have met all of the members of the
MoMMAs Voices team right nowwe're gonna talk a little bit
about what we do over here and,and each of us are roles.
So one of the things that westarted about a year ago was we
created what we call the LivedExperience Integration
Scorecard.
And what this does is it takeswhat we consider the best

(07:16):
practices for patient engagementand, and lived experience
integration and how we'reraising the bar from engagement
and advisors to partners totruly integration.
And we have a scorecard thatputs together what we consider
those best practices.
And it's on our website, it'savailable for anybody to take,
and you can see immediately whatyour score is for your
facility, for your organization.

(07:37):
And then also how you compareto others that have taken it.
We have all of this reportinglive available for those that
take it.
And we took those pieces and wecreated a training for that and
realizing that those, some ofit seems simple, it's not always
real intuitive.
And so how can we help toexplain and, and to eliminate as

(07:57):
many barriers as possible.
And so we put together a coupledifferent ways to present that
information.
And one of those is through ouronline course, the LEI
Foundations which is about twohours long.
And we go through what thesebest practices are and provide
resources and thoughts and, andadvice on how to overcome them.

(08:18):
We also offer this in differentsettings such as workshops
where you bring different peerstogether and faculty that are
able to present on topics andgive different perspectives.
And we want to model that samebest practices with our
trainings.
We do also do hybrid.
Participation in, in a coursethat is designed to go over

(08:40):
multiple weeks and we providespace for peer-to-peer sharing
and learning.
That is really where the magichappens, and those that are
doing this work are able to findsupport from others that are
working to engage patients,they're able to hear how some
people are overcoming challengesand share what roadblocks and
things that they're having to,to deal with and see what kind

(09:02):
of advice that they can get.
And it's so powerful to see ithappen in action that oftentimes
at the end of these hybridmodel courses that we, these
classes that we.
The participants don't want itto end.
They feel like they have reallyfound a community of peers that
understand what they're doingas well and are all working

(09:23):
towards a common goal.
And so we recognize that it istwo sides to, to working
together and for patientengagement, for true lived
experience integration.
We need to train patients andwe also need to train providers
and clinicians on how to worktogether.
We really, truly wanna seteverybody up for success in
knowing that by doing this thathopefully will happen.

(09:45):
So I'm gonna let Bekah talkabout our patient family partner
training and what is includedin that and how this all comes
together.

Bekah (09:52):
Thank you Nicole.
Mandy actually mentioned just afew minutes ago, PFPs, and
that's what we call our patientfamily partners that are going
through this training and thistraining is to help teach them
how to.
Online platform.
They have video modules thatthey watch.
They have an assessment wherethey really think about if they

(10:14):
are ready to embark on thisjourney of patient advocacy.
We recognize that not everybodyis ready.
Sometimes we have our PFPsstart and they decide that they
need to press pause for a littlebit, and that's okay.
We want to give them thefreedom to feel like they can
take ownership of that.
And we want them to be wereally just want them to feel as

(10:36):
equipped as they can be.
And so we provide directcoaching and mentoring for them
as they heal from this.
And this is just the best partof my job, really getting to
talk with them and have themunpack some of the painful
trauma that they experienced.
And sometimes they say thingsto me like, I've never said this
to anybody else before.

(10:57):
And it's just a real sweet,nurturing, safe space where they
get to talk about what theywent through.
And I get a front row seat justgetting to watch them heal.
They also are able to connectwith other PFPs and build that
strong community.
So just like Nicole was talkingabout they, they didn't want,
our faculty didn't want our lastcommunity of learning to end

(11:19):
because you build that bond andthere's something to be said
about us all coming together asa community and we recognize
that we might each havedifferent pieces of our story,
but we share that samecommonality and bond and
experiencing a trauma and thatpassion and fire to want to
ensure that no other family hasto go through.

(11:40):
We also offer support andtraining to them with continued
education training, such asspecific topics that they might
be interested in.
So MMRCs, the AIM core safetybundles different ways to get
involved in quality improvement,such as state PQCs and getting

(12:00):
involved in research and policywork.
We really also focus on givingthem the space to find their key
message.
And so they might come to meand say, I have this really
extravagant story.
How on earth can I go sit on apanel or how can I go speak at a

(12:21):
hospital?
I don't know how to make mystory impactful.
And I get to unpack that withthem and I get to hear what it
is that they really want toconvey.
Then with that, butadditionally, they also get
support.
Before and after engagementsthat they do where they feel
fully prepared before theengagement, but then also have

(12:42):
that continued support followingit because we understand that
it can be traumatic no matterhow far removed you are.
From your experience, it canstill be re-triggering.
So we really just wanna supportthem in any way that we can.
I like to joke and say that wegive them their wings to fly.
You're not limited to doingengagements with just MoMMAs
Voices so often we will partnerwith, we'll partner you with

(13:06):
another opportunity and you willget other ones from that.
Somebody might hear you speakand say, we wanna talk to her
and they get your contactinformation and it just
continues from there.
So we want you to take youradvocacy work where you feel
called to be and just continueto do that and take over the
world.
And so now I'm gonna turn itover to Emily, who does such a

(13:27):
great job with our matchmakingprocess and really helping to
connect all of those dots ofspeaking engagements and all
those logistic.

Emily (13:36):
Thank you so much for that, Bekah.
I'm excited to talk about ourmatchmaking process that we have
with our wonderful certifiedPFPs.
We have a template on ourwebsite that you can fill out
the more information that youcan give us.
The better we're able to matchyou with a perfect person.
After you fill out theengagement form, you can

(13:58):
schedule a call with me.
And this is really to get tothose details for me to
understand at the core what kindof person you're looking for.
Are you looking for aparticular part of their story
that you wanna focus on?
Are there certain demographics?
You're looking for ourlocation.

(14:19):
I really like to discuss thosedetails in person to get a sense
of who to match you with.
Then I'll search for who Ithink will be the best person
for this project, and I'll sendyou their headshot.
And CV for you to review if youagree.
I like to do an introductorycall with them, and I always

(14:40):
like to be a part of thatprocess.
Then we can really talk aboutwhat this engagement entails.
If it's a virtual engagement,we'll discuss the technical
details of the event.
Do they need slides, paperworkfilled out?
Do they need to addressdifferent parts of their story
to the audience?
Will there be a q and a?
What type of audience can theyexpect to be talking to?

(15:02):
How early do you expect them toarrive?
All these things help our PFPbe as prepared mentally and
professionally as possible.
After the engagement, both PFPsand the provider receive a
survey.
To make sure that one, we haveprepared them as best as

(15:23):
possible, and two, if it wasactually a meaningful
experience, because it's onething to have these engagements,
but at at the end of the day,is it going to change anything?
And we like to send those tothe providers as well.
Same sort of questions.
Did we, were we able to helpyou the best we could?
Did we match you with the bestperson?

(15:44):
How did that person do duringthat engage?
All those pieces are reallyimportant for us to, to learn
from and continue to be the bestpossible matchmakers that we
can be.
And one thing I want to noteabout the matchmaking experience
is what we like to callunicorns.
Why we love to place you withthe perfect person that you're
looking for.

(16:04):
And sometimes we can, sometimeswe can hit all of those details
that you're looking for.
But if we can't, for example,you're looking for someone in a
particular location I encourageyou to give us the opportunity
to give you several differentvoices to represent the things
you're looking for.
For example, someone from NewYork to speak, that can speak to

(16:26):
their experience and thenpossibly in another state for
demographic or a piece of theirstory that you're looking for,
or for example, how long agothey gave birth.
I really encourage you to addmore voices in there if we
cannot find you the perfectunicorn that you're looking for.
And the reason we recommend ourPFPs, rather than just a

(16:46):
connection you've made, isbecause they are reliable.
They've been through ourtraining so they can be
prepared, are mentallysupported, because this can
often be a triggering event likeBecca talked about.
They already know how to tailortheir story to different
audiences and so much.
Next Mandy is gonna talk to usabout support bundles.

Mandi (17:07):
Thanks Emily.
One of the opportunities thatour PFPs and MoMMAs Voices
engaged in and continue to beengaged in is the AIM support
bundle initiative.
We've been working with AIM,which stands for the Alliance
for Innovation on MaternalHealth, on support bundles, by
both providing patient voicesand also by engaging providers
to assess the feasibility of thesuggestions.

(17:29):
There are many bundles that arecondition specific such.
Hemorrhage, hypertension,mental health, severe maternal
events, and many more.
Once those bundles arecomplete, they provide guidance,
actions, and resources to thehealthcare providers so that
they can provide the best andsafest maternity care and
outcomes to all birthing people,in addition to educating

(17:53):
medical professionals.
MoMMAs voices also emphasizesthe importance of educating our
own community of advocates,moms, and support people.
We do this through ourquarterly community calls.
These free virtual webinars areopen to everyone, even if
you're not a PFP.
Anyone who's interested iswelcome.
The calls are an hour of anexpert speaking on a topic, then

(18:14):
followed by communityconversation.
The conversations are alwaysinteresting and can go anywhere.
Past topics have includedsetting healthy boundaries,
asserting yourself allyship andinspirational stories from
different PFPs and engagements.
Participants come out of thesewebinars experiencing all the
feels.
Sometimes we feel empowered toaction, and sometimes we laugh

(18:36):
together.
Sometimes we cry, but we'realways learning and bonding.
These are great opportunities.
I love them personally, and Ihope that we see all of you at
our next community call.
Feel free to sign up on ourMoMMAs Voices website,
mommasvoices.org, under theevents tab, and also on that tab
you'll find the recordings ofpast events.
If you can't make it, we wouldlove to see you there.
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