"Turning Pain Into Purpose" with Mandi

This episode of Power of MoMMAs Voices is a conversation with Mandi Gross, a Patient Family Partner and also the Administrative Coordinator for MoMMA’s Voices. Hear Mandi discuss her journey from pregnancy to postpartum preeclampsia to maternal health advocacy with MoMMAs Voices Program Manager, Bekah Bischoff. 

“I truly found my calling in advocacy and my MoMMAs Voices crew.”

“It's been such an unexpected, but amazing thing in my life. I would say take the training, join the community, find the ‘momeraderie’ that we have…”

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.

Episode Transcript

Bekah (00:01):
Hello and welcome to today's episode from Power of
MoMMAs Voices.
My name is Bekah Bischoff and Iam the program manager.
Today we'll highlight acertified patient family partner
who is also one of our MoMMAsVoices team members and one of
my dear friends, we'll talkabout her experience in
pregnancy, the postpartumperiod, and also how she came to

(00:24):
MoMMAs Voices.
We hope this will give insightto our listeners about different
perspectives while alsocreating a greater sense of
community.
I'm so excited to introduce ourguest today, Mandi Gross.
Mandi is a survivor ofpostpartum preeclampsia as well
as postpartum depression,anxiety, and O C D.
She's a certified patientfamily partner, being one of our

(00:47):
first advocates to getcertified and has been the
administrative coordinator forMama's Voices for the past year,
and thank you for being here,Mandi.
It has been such a joy gettingto know you and seeing you grow
as an advocate.
I would love for you to share alittle bit about your birth
story with

Mandi (01:08):
us today.
Thank you so much, Bekah, forinviting me to be here and share
my story.
My story started about a weekafter I had my daughter in 2013.
I had a C-section, so I was inthe hospital for a few days and
I had just returned home.
When I woke up with the worstheadache of my life, it hurt so
bad.

(01:28):
I remember part of me justthought that could be a normal
thing following a C-sectionafter 16 hours of labor.
But there was also part of methat thought if this is the
worst pain I'd ever felt and Ihad just given birth, there must
be something wrong.
So I called the doctor and theytold me that if it hurt that
bad to go to the emergency room.
So the closest emergency roomwas a standalone er near my

(01:51):
house, and it was not affiliatedwith where I delivered.
So my doctors did not haveprivileges there, which created
problems later.
When we got there, my bloodpressure was elevated.
I was hyper reflexive.
I continued to have that worstheadache and no one informed me

(02:11):
along my whole birth pregnancyjourney that postpartum
preeclampsia was even a thing.
I had never heard of it beforeas we sat in the ER for hours.
While they were taking bloodand running scans and other
hospitals were consulted on thephone, I didn't know how to
advocate for myself cuz I hadnever even heard of this
condition.
All the while my blood pressurewas still going up.

(02:35):
The headache continued.
I remember asking for them togive me some medicine to make
the pain stop, but they wouldn'tgimme anything until we had
filled out all the paperwork andmet with the doctor and signed
all the waivers and all of thiswas going on while I was
experiencing the worst pain ofmy.
My pre-pregnancy blood pressurewas actually super low, so

(02:56):
being anywhere near the one 50 sover nineties was very, very
high for me.
More than someone who was bloodpressure was high before.
So eventually they decided totransfer me to the full service
hospital close by to the laborand delivery department.
And as I said before, mydoctors didn't have privileges
there, so, I had to see whoeverwas just on call that night who

(03:20):
didn't know my story or myhistory.
We waited in that ER for hoursfor the ambulance to arrive, and
once it did no one instructedthe paramedics that I had a
c-section.
With an incision that was nothealed.
And they said that had theyknown, they would've been more
gentle.
So they were fairly roughmoving me around and hurting the
whole time.

(03:40):
No one told us what washappening and to the extent that
this could be dangerous.
I remember my husband askingthem, are you gonna take us
using the lights?
And they responded, not unlessshe tries something, which at
the time we thought was a joke.
I spent about 24 hours in thathospital on magnesium IVs.
But they never gave me bloodpressure medicine.

(04:01):
I remember the sting of themagnesium, which other people
with preeclampsia would, Ithink, relate to.
It just hurts when it's goingin.
While they were there, theycontinued to run tests and an M
R I that they did run, revealeda pituitary cyst.
This was announced to me in themiddle of the night, and I was
told that someone would explainit to me in the morning.

(04:22):
So as anyone being told thatsomething was on their brain and
they didn't know what it was, Istarted to panic and cry.
And my best friend's husband isa neurologist, so I panic.
Called them in the middle ofthe night and he talked to me
down and explained my condition.
He asked if I had preeclampsiaor eclampsia, and I said, well,
I already had the baby, so Iguess eclampsia.

(04:44):
And he had to explain thatthat's not how this works.
Pre-eclampsia even after youdeliver, it's just postpartum
pre-eclampsia, which now I know,but I'm so thankful that I had
him to talk to because otherwiseI would've still been clueless
as to what was happening in thatroom.
My doctors did not visit methere because they didn't have
the privileges.
I was discharged without bloodpressure medication.

(05:08):
With a bunch of dischargepapers saying delivery is the
cure to preeclampsia, whichclearly in my case it was not.
One day later I had arecurrence of the high blood
pressure, the headache, all ofthe things, and I was
readmitted.
I was given more magnesium,more days, discharged this time
with medication.
That whole situation resultedin postpartum anxiety,

(05:30):
depression, P T S D O C D, andyears later, I'm still afraid to
be too far from medical help.
When people say, what are theodds of that happening, that's
so rare?
Well, what I had was rare andit happened, so I never trust
that things won't happen to meagain.
Wow.

Bekah (05:47):
There's, oh gosh.
Thank you so much for sharingall of that.
There's so many things thatcould have gone so differently
for you.
I just want to acknowledge thatthat was really hard for you to
relive.
I know that.
You know, it's been years andyou've gone through training and
healing and all of that, butit's still is hard to relive

(06:09):
that and uncover it.
So thank you for being willingto share that.
I'd like for you to share alittle bit about what inspired
you to take your experience andyour story and become an
advocate and how that led you toMoMMAs Voices.
Yes, of

Mandi (06:27):
course.
During the pandemic, like a lotof people, I was searching for
a community so I could not feelso alone and isolated.
So I joined a support groupfrom Postpartum Support
International for the maternalmental health part of my
journey.
I'd like to shout out now to mysupport group Mamas who we are
still in constant contact andthey're wonderful, wonderful

(06:47):
women.
And I also wanted to beinvolved in the pre-eclampsia
community.
So I was watching a webinarfrom the pre-eclampsia
foundation and the speaker wasaffiliated with MoMMAs Voices
and she was so moving and I wasjust sitting alone and crying
about her story.
And she recommended thateveryone check out MoMMAs
Voices.
So I signed up for the PFPtraining that day, and I met

(07:08):
you, Bekah, and my life waschanged forever.
I truly found my calling inadvocacy and my MoMMAs Voices
crew and I got hired by MoMMAsVoices after a long time of
volunteering and advocating, andnow I get to work with my
friends and do what I love andhopefully help people.
And on a personal note, Bekah,thank you for being my guiding

(07:29):
light throughout my journey.
And I really could not havedone it without.

Bekah (07:32):
Oh, you're so sweet, Mandi.
It has just been such a joy toget to know you and I am so
grateful to call you my friendand just will forever be
grateful that our paths havecrossed you work so hard for all
the mamas and it is just, justsuch a joy to work with you.
You have also had some amazingopportunities that you've been

(07:55):
able to be paired with sincebecoming a certified patient
family partner.
Could you share some of thosewith me.

Mandi (08:02):
I am really lucky to have had some wonderful engagements
through MoMMAs Voices and one ofthem was I got to participate
in the hypertension bundlesharing my patient perspective.
The bundles are sort ofguidelines for providers to
follow.
So I felt really honored togive my perspective to that.
And I also got to serve on theFlorida Perinatal Quality
Collaborative, the F P Q C.

(08:24):
And their wonderful anddedicated group of professionals
worked with me to include thepatient voice.
We've worked together on theirinitiatives to improve maternal
healthcare by having discussionsand reviewing handouts and
stuff like.
They've also invited me tospeak at their convention in
Orlando and share my story, andthat was one of the most
fulfilling things I have everdone.
Everyone was so welcoming andinterested and just made me feel

(08:49):
like it was really making achange.
Additionally, I am helping torun a diaper and female product
drive in my local area.
I learned about the importanceof having a diaper drive from
2020 Mom, and Mom Congress,which I'm also members of.
And they're great organizationsthat also work with MoMMAs
voices.
We did a diaper and femaleproduct drive last year and got

(09:09):
thousands of products.
So I'm really excited to dothat again this year.

Bekah (09:14):
That is so amazing.
And I have to ask, did you everimagine two years ago that any
of these opportunities youwould've been able to be a part

Mandi (09:23):
of?
No.
I never thought my life wouldtake this path.
I actually went to law schoolas my career and I never thought
that it, this is what I'd bedoing, but I am not happy for
what happened to me, but I amblessed that it allowed me to
help others and find my truecalling in life.

Bekah (09:45):
Yeah, we always say that it's a club that you never
really wanted to be a part of,but once you get in it, you find
such a great bond andconnection, and then all these
amazing opportunities thatyou've been able to be paired
with and really be a part of thechange in improving outcomes.
If there's somebody listeningto this podcast now, what advice

(10:07):
would you give them?
If they are wanting to getinvolved, but they just really
don't know how or where tostart?

Mandi (10:14):
My advice is totally to do it.
It's been such an unexpected,but amazing thing in my life.
I would say take the training,join the community, find the
momeraderie that we have.
The networking groups forcertified PFPs are interesting
and you meet awesome people.
I also support MoMMAs Voices bybuying all of the merch.
My daughter says that all of myclothes say MoMMAs Voices, and

(10:35):
pretty much she's right.
So I'm so, so thankful for thiscommunity of advocates and also
for the mentorship from theseasoned PFPs and the MoMMAs
Voices staff, and I'm so happythat I started out with you
helping me through the trainingand now that we got to be such
good friends and I get to justbe part of this community.

Bekah (10:53):
I love that your daughter says that.
Oh my goodness.
Every time I'm on a call withMandi, she's always got on a
MoMMAs Voices shirt, and I justlove that.
I just love it.
Well Mandi, thank you so muchfor your time today.
I know that this has gonna besuch an inspiring episode for
our listeners that's reallygonna help them want to get

(11:14):
involved.
And just thank you so much foryour bravery to share your story
and for just all the amazingthings that you have done and
all the things that I know thatyou will continue to do.

Mandi (11:25):
Thank you, Bekah, for having me today and for
everything you're doing formamas out there, everywhere

Bekah (11:30):
you are.
So welcome.
Thank you.