Surviving Sepsis

The MEternal Podcast sits down with Busie Matsumoto-Andan who birthed a child with sepsis. We discuss her journey in saving her daughter's life through self-advocacy.

Episode Transcript

(00:00):
So we appreciate you coming up heretoday. I know you have a lot
of things to share with us,and I'm not sure how familiar you are
with the platform, but me Eternalwas launched about a year ago. We
wanted to take thank you, thankyou very much. We wanted to give
a space for mothers of color tobe able to share their stories and just
be able to inspire other women withsome things that are good and some things

(00:22):
that are not so good. Butthe goal at the end of the day
was teaching us how to self advocate, right, So that's well done.
Thank you, And you just metdoctor Elizabeth Schirou on March of time.
It's amazing. I mean as apremium myself one of twenty six weeks in
South Africa and my mom was ina coma. She contracted malaria from Kenya

(00:46):
and she was very fortunate that cousinwas radiologist in the same hospital and was
able to notify the doctors where shehad been and they were able to go
through the write protocols. So Ithink, I mean, when you talk
about maternal and that kind of thing, it's it's a great platform because advocating

(01:08):
for those who don't have a voice. Timing is everything when it comes to
maternal health, and as a motherof three, was gone through different types
of situations from the first till thethird. Fortunately I was able to advocate
for myself and I had excellent healthcare health insurance. So that's important because

(01:36):
knowledge is everything. Yeah, andit's rare, right in terms of like
access and resources, especially amongst communitiesof color. The things you take for
granted, or people don't think muchof it. We think of other things.
We don't. We think giving birthis just natural. We don't think
about what could go wrong. AndI'm excited because I remember with my youngest

(02:02):
when I was at twenty five weeks, I was hospitalized and she was born
about seven weeks later at two anda half two pounds eleven ounces. And
this was at Morgan Stanley Hospital,Columbia Presbyterian. Fast forward, I was
in the while I was in theneic queue, I mean sorry, while

(02:23):
I was in the antipothem department,I learned how to I mean they wanted
to remove the baby right away,but my negotiation tactics kept my baby in.
I kept on. They said,okay, one day at a time.
One day turned to two days tillseven days. I had multiple rushes
to labor and delivery. But Iwas fortunate that I was able to advocate

(02:46):
for myself and the doctors noticed that, and they're like, you always seem
so pleasant, you always seem sopositive. I spent time with the chaplain.
I spent time with the head ofthe nursing department. I would ask
and then I asked the chaplain,I mean, I who are the people
who do well here? They said, the people with a lot of faith.
And they tended to say whether it'sa Muslim, whether it's Christian,

(03:07):
whether it's a Jewish community who willhave strong faith that they will be out
of there. They tend to dobetter in their antipothan department. And so
fast forward to the birth. Becauseof that, I ended up wanting to
join the patient Advisory Board. ActuallyI was invited to the Patient Advisory Board.

(03:30):
Unfortunately around that time with all thepaperwork and everything, then COVID also
hits, so that took away frombut it made me. They said why
I stood out was because they didn'thave enough people representation in these offices,
I mean, in these platforms.And I realized that with disparities there's so

(03:54):
many things that happen when you talkof disparities, language, barrier, income,
access to healthcare, knowledge, youknow, education, it's a lot
of that's a hindrance to all thisinformation. So when I see maternal maternal,
I'm so excited that it's now availableand we're having these conversations on a

(04:19):
wider platform because it's the timing iseverything. Yeah, So what made you
stand up and self advocate for yourselfand do you think that is a key
factor to the success of your daughterand your birth I come from a family
of advocates fortunately my parents. Mydad was an advocate who was a lawyer

(04:45):
and he fled IDIO means regime toBotswana. My mom was also in the
struggle against apartheid, and my family, both on my dad's side and mom's
side, were very active in differenttypes of forms of activism, including one
of my dad sisters was actively involvedin the Beijing Conference for Women. And
then I've had an aunt, agreat aunt, my grandmother's older sister was

(05:05):
one of the first women to goto university in Uganda. You know,
So I come from a lineage ofpeople who trailblazers and we've always been encouraged
to speak up when we and thenfortunately I have also had allies while willing
to listen, and then I don'tsometimes see I see opportunities when I see

(05:28):
allies, and I bring certain thingsto their attention, and I think that
has helped and it did help mebecause it brought me time. It's also
I remember the first doctor who cameto me just made me burst out into
tears. She just says, I'msorry, there's nothing I can do.
And she was very I mean,i'll tell you blatantly. She was not

(05:54):
nice. And how she delivered themessage, how she delivered the news to
me, she was she felt veryinsensitive. And I remember a nurse giving
me the eye that if you're inpain, speak up, if you're in
pain, speak up and choose events. Woman of African American and she told

(06:17):
me that. And this is justafter remember them when Serena Williams had had
her maternal crisis, and then thelady with the CDC who wrote upon the
disparity, and then shortly after shedied because of all this disparity. So
I learned how to I took Inever I didn't live in any stone unturned

(06:41):
and if I didn't like something,I spoke about it and I made it.
I demanded, I demanded what Ibelieved I needed, which led to
action, action and a I wouldsay better outcome. Absolutely in a long
yes, absolutely, And I madesure I was there when I was they

(07:03):
were testing. I made sure likethey were one of the dog, one
of the one. I was toldthat I couldn't do kangaroo and shore they
said no. Then one of thenurses, because I built a real poor
told me it's your right. Peopledon't know that it's your right to ask
for kangaroo. What is that like? Yes? Skin to skin? Okay,

(07:25):
okay, skin skin. So sometimessome practitioners are very lazy and they'll
tell you no, they don't wantyou to remove the baby from the incubator
to have skin to skin. Andthey had I said I wanted to hold
my baby. Says no, youcan't, this and this and that.
I said no, I want tohold my baby, and they and they

(07:46):
they couldn't argue with that. Butyou know what, I'd been tipped off
about what I could do. ButI think about all the other women that
go into that experience who we're toldnow and then it's like, because it
comes from authoritative person, they thenback down and they don't fight for what
they're entitled to. Absolutely, there'sa fear of ruffling feathers and that leads

(08:13):
to keeping quiet. But the moreyou hear about success stories, you're able
to advocate. And I share thesestories, I mean with friends when I
asked for second ask for people toask for second opinions. You know.
I'll give you an example for me. With my first child, I was

(08:37):
chronically They said I was chronically hypertensivefrom when I was six weeks pregnant,
and I didn't understand I was asize too leaning on a size for I
was pretty pretty petite, and Iremember going to the doctors and they were
like, oh, this is Idon't know what, And there was no
clumsier by the way, and Iwas at that time, I think I

(09:03):
had been laid off and I wason Medicaid, and I saw interesting dynamics
because how people are treated. Thiswas at Metropolitan Hospital, so I've experienced
it from the other side and thenthe positive side, which is when you

(09:24):
have and when you don't have.And I kept quiet, but I was
patient, but the doctor liked meand then she began to say she wanted
to see me, but at thetime they didn't. And then after that
that time, my husband was myfiance and they did not. I think
when people heard that he was aresidence, it changed the dynamics and I

(09:48):
didn't have to tell anybody, andthen I was in entrance. I got
my healthcare insurance and everything. Everythingwas sorted. But it was interesting that
it didn't have to be that exactly, but it made me saild be a
voice. And my child was bornsuddenly because she went into fetal distress after

(10:09):
pitocin was in juice because she wasa small baby at five pounds eleven five
pounds eight ounces, so she wentinto fetal distress. Her heart treatment and
then I was knocked out. Iwas under general anesthesia. But even with
that said, the doctor said,you were naive. As many times I
wanted to remove the baby, andin my heart I was like, no,
I just had faith, and Ispoke up because I remember one time,

(10:33):
I think I was given a lotof iron. I said, I
think this is a lot of iron. You know, and you know,
and you know your body it's likeand that's why it was always so you
know, baffling to me is thatyou know your body right. I was
similar to your situation, you know, I had the opposite. So I
was a teen mom and I wasunder my parents' health insurance. And because

(10:56):
I was black and I was young, I was it was perceived I had
medicaid, which if I would havehad medicaid, there would have been nothing
wrong with having medicaid. It's justI happened to have my insurance through my
parents. But because that preconceived notionwas there, I was treated as such
right and and my experience with myson was totally different than my experience with
my daughter. So by the timemy daughter came along many years later,

(11:20):
I knew what self accuracy was.I knew what questions to ask. My
birthing experience was totally different. Ipicked the right hospital, like I was
very intentional about it, but similarto you, you know, was given
potocin rushed into labor. I waslike, this isn't I know my body
can go into natural labor, tothe point where by the time my daughter
came years later, I fought tohave a natural birth and they were like,

(11:43):
no, you can't be myself,and I had to go get like
pictures of my servix to show thatI was, you know, cut properly
and mean, but it was afight, like it was a fight,
but I said, I am notgoing to go through that again. My
body has a capability to deliver normal. I know I can do this,
and I had a mindset for that, and that's what happened with my daughter.

(12:03):
So night and day experiences. Butagain, just being prejudged, be
a lot of preconceived notions being there, and it's what a game changer when
you know better, right, youknow how to do better for yourself absolutely,
Like for instance, I'm average negativeand if the baby has different different
blood type, the chances that Icould reject the body, I mean the

(12:30):
baby because of the antibodies. Andso at that point they wanted me they
said, oh, the baby's testing. I think we're seeing a baby who
might have Down syndrome. This waswith my first but before that they hadn't
seen anything. But then they saidoh this and that later, like much
later. Then I'm like, no, then you should have given me that

(12:50):
information earlier. And so what doyou want me to do? Use that
information for so to decide whether theywant to abort the baby or not.
When I said, well, Iwant to keep my baby, and they
harassed me. They harassed me,kept on calling me, and I said,
will you not call me? Idon't want to do an what they
am new I am sesus yes andyeah, scentisis. Finally I've said it.

(13:11):
I can't believe I just said itright, yes, And they were
insistent and I said I don't wantto do it. I don't want to
leak and then have a problem.This is how I felt, and it's
it's painful, like I haven't hadone done, but I did a lot
of research on it, and I'mlike, oh, nobody wants that.
If someone doesn't want it, don'tforce them the thing. And so I

(13:31):
didn't want to do it, andmy baby ended up being born fine,
and there's nothing wrong with doing it, but it wasn't like a life and
death situation if I wanted to,if I wanted to pass on it,
respect that, you know. Andthen they put that I wasn't reset I
wasn't and you didn't read it anyway. I don't need it anyway, you

(13:52):
know. And then I was likealso challenge and I'm like, if why
didn't you let me know before Iwas twenty one weeks. Why waiting for
me at twenty three weeks, twentyfour weeks, you know, absolutely not.
I'm fine with my baby right now. However, the baby is born.
So you've had quite the pregnancy journeys, yes, right, And then
you also had it in with mymiddle one, she was a viedback.

(14:15):
But how I found out I waspregnant. I had a lump in my
breast, a fibrodendinoma, which thedoctors eventual said they didn't and I have
to remove it right that, Ihad to do a biopsy the time,
and then I wanted to have itremoved and the doctor says, no,
wait for it until you've had thebaby. So it was quite a journey.
And then they said the baby wasn'tgrowing properly, and then she said
I was after that I had to. And I think some of it is

(14:37):
also the stress from what they tellyou so many I feel that it's defensive
medicine sometimes and the patient has todeal with it because I just had small
babies. And my mom said shealso just had small babies, so I
was just genetically maybe made to havesmall babies. And they were fine,

(15:00):
you know my babies were fighters.I was a small baby myself, and
yeah, so my middle one wasa v back. She came by herself,
and then they said I couldn't havea V back. I lived in
Jersey at the time, so whatI did was like, no, I'm
not having my baby in Jersey becauseJersey depends. I learned some things I
found out in Jersey because of theyhave fewer doctors and more nurses, and

(15:26):
they don't want they're not really trainedin fossops using fossips. Yeah, exactly,
exactly, and I think a littlebit more. Yes, yes,
yes, So I knew that Iwas going straight into New York and I

(15:46):
did that. And so then mythird ones, I've had the knocked out
general. I was gonna say,you have a lineage of strength and tenacity
because General nscusia with the first onebecause I was, I mean, this
fetal distress situation. Then with thesecond one v back. Then with the
third one, at thirty two weeks, my water broke and she had a

(16:10):
skinny umblical cord which was around herneck. So they had to schedule me.
First, I had to have surgery, but it was I was awake
while I had this one, soI can talk about the different experiences.
Yeah, was this the baby thatwas born with sepsis? Yes, So
it's interesting. We discovered that sheat four days old. She was a

(16:33):
fighter, very full of personality whenshe was born. And then suddenly we
noticed that under the lights, thepurple light, the blue light, right,
is it blue of purple? Oh? I think it's blue maybe,
yeah, purple, it's something.It's something. Yes, for the jaundice.

(16:56):
That her fingers were black, andI again, I think I was
this patient who kept on asking toomany questions. I went to the attending
I said, Hey, my baby'sfingers discolored. I don't maybe it's too
tight. Then it's like, letme see it, and it's like,
I don't think it's too tight.I think she actually has a body infunction.

(17:19):
I think she has she actually hassepsis, which I never heard of.
So what is sepsis when the bodygoes into shock basically and the organs
begin to shut down. So that'swhat it was. I was. I
never knew about sepsis. This wasthe first time, and then I began
I got so scared. I've neverbeen so scared. It's like we're starting

(17:42):
her on antibiotics immediately as we getthe cultures. They couldn't wait for the
cultures to come back. It wasa life and that situation. And they
did that and then they I wastold, oh, we had a spinep
but it was not success. Thisis when I had gone home because the

(18:03):
baby's too tiny and the needle.Then I'm like, you're going to do
it right now. Then the anathesiologistwas like, mom, that's a lot
of pressure. I said, well, you're going to manage It's okay.
I believe you're going to do it. You'll do it right. I did
it in front of me and wasable to do it, but of course
it put the screen between us.And I was happy that that happened.

(18:26):
And she's a healthy five year oldand it saved your baby's life. It
saved my baby's life. And Ifound out. I was just talking to
a friend of mine who was onthe National COVID task for she's an infectious
disease person doctor, and she's like, wait a minute, I think you
could be good for the National SepsisAlliance, which is an organization which is

(18:51):
bringing awareness to sepsis and also researchwith regards to sepsis and noticed that it's
been especially after COVID, there's beenbeen higher cases of sepsist than usual.
Interesting, And the problem is thedisparities and communities of colors. Why they

(19:12):
don't know much about it. I'llbe honest with you. Until I had
read your bio and got information,I had never heard of it before.
Wow. And now they're doing allthis research, they're trying to advocate for
it. I mean the CEO,Tom Haymond, he's amazing, Yes,
and he's just been bringing up they'vebeen bringing awareness to it and partnering with

(19:37):
different organizations. You know, that'sgreat, what's interesting. And this is
how I know we're on the righttrack in terms of the conversations that we're
curating. Up Here is doctor Chiauwho was in here before you recording.
She was started talking about sepsis andI'm like, oh my god, like
and then you were coming. Shehad no idea. You were so serendipitous.
H yes. So it's like,it's this is the conversation we're supposed

(19:59):
to be having. Let me tellyou it's so funny because how this happened
was I was a speaker at ForbesBlack the first Forbes Black Summit in Atlanta,
and I was told about coming oniHeart with you, and then I
was told what you do and I'mlike, I'm interested in the maternal podcasts

(20:19):
and it's happening. So that's whyit's important for us to continue going on
these platforms because that's amazing. AndI talk about mainstream platforms because people blog
about stuff, but there's some bitof traction when people and validity when you

(20:41):
go onto mainstream platforms totally, SoI feel we're moving in the right direction.
We are, we are, AndI have to shout out my my
market president Bernie Wise, who actuallywas the facilitator of this plat form.
He leads a community Initiatives meeting thatwe have, I think quarterly with a

(21:04):
lot of our partners here, andyou know, one of the initiatives that
came up was the Black maternal HealthCrisis. Into his credit, he's not
even a person of color. Heis absolutely you know, he's a white
man we have to work with comehere and has seen like the importance of
diversity and inclusion and making sure thatthere's a space for these conversations to take

(21:26):
place. So shout out to Berniebecause and the same thing with Tom Hammond,
he's not a person of color.The Stepsist Alliances National Stepsist Alliance is
not it's a mainstream, big,I mean, larger than life organization.

(21:47):
And so I think we have towork together to this is a this is
a what do they call it?A public health crisis which we have to
team up together to fire. Andyeah, and I think it's working out.
Yeah, Well, we have somemore work to do, because I
did just sit with March of Dimesand we did go through the report card

(22:08):
for New York, which was okay, we got a C plus here in
terms of pre term births and wedid actually they released their maternal Health report
early on in this year. Sowe have some work. We have some
work to do, but in termsof making talking strides and making the conversation,
the conversations more mainstream, which isimportant, and letting you know we

(22:32):
need to talk about this more.We need to form partnerships, collaborations and
be intentional and deliberate about dealing withit. And that's what you're doing,
Kenya. Oh well, thank you, and you're doing it as well.
Yes, I'm trying and you're workingin a lot of different spaces. So
you're a global consultant, so tellus what that entails. So I just

(22:55):
I have a consulting firm and Ido advisory and the strategy advice companies as
well as individuals. So that's theconsulting parts. Yes, and then I'm
a board trustee of a college,Berkley College, which is in New York
and New Jersey, and I convenethe Africa Future Summit, and as well

(23:17):
as on the advisory board of theNational Sepsice Alliance, which people should definitely
look into because I think as we'redealing with all this maternal health situation,
there's been an uptick in sepsis.Interestingly, the SEAO of the Maternal of

(23:40):
the March of Diamonds, Elizabeth Short, just said that it's interesting that it's
also with women, more women ofwhite women, you know, but I
was saying, are women of color. The problem is that many pople don't
know about it. So that's whatweather pro problem is. So statistically it's

(24:03):
not probably lining up because there's nota greater awareness amongst what we're actually dealing
within our community. Yes, absolutely, Yeah, Well, this has been
a pleasure having you here and sharingyour story. Is there any advice or
anything that you want to share thatyou think will help any other mothers of
color that are out there who mayhave gone through a similar experience or may

(24:25):
be facing a similar experience in termsof pregnancy, childbirth, and just being
able to advocate for their family overall. If they have language barriers, they
should talk to someone who can helpthem speak on their behalf. Also finding
people in the hospital who you cantalk to. I think it's a multifaceted

(24:49):
approach. Using a multifaceted approach becausesome people could discourage you, but don't
give up. I think the thingis, don't give up. If someone
you get to know here, goand find out from someone until you feel
comfortable. As long as you knowmaternal instinct is deep the moment you have
it, don't settle, go forit. Don't let anyone say that,

(25:10):
oh, you're being too much.No, if you think someone is treat
making you feel that way, goand talk to people. Even the hospital
they have departments that deal with whetherpeople are not treating you right or not.
Should be able to find that informationand don't be afraid. But I

(25:30):
think a lot of the intimidation comeswith the fact that sometimes I remember feeling
this right as a young mom whojust felt like just prejudged and felt like
I couldn't speak. I just feltlike people were looking at my circumstances and
not looking at me as a human. So therefore I didn't feel empowered enough
to speak up for myself. Butby the time I got to my daughter,
I was a whole nother person,and right, I could say is

(25:52):
also people should be nice to thehealthcare providers, whether the nurses, even
the plebottomists, even theology and thenevery badlogies, everybody, even the nurse's
aides, because when you're like,I'll give you an example, I was
in the antipotum division, which waswhere women having complications are putting bed rests

(26:18):
in the hospital. If people they'rehuman too, and if you're nice to
them, they'll treat you with kindnessto right, and they'll advocate for you
in a way that you might notknow. And so I think though we
could use soft power to win themover as well. And they're also they
have you know, they're an importantrole in your healthcare. It's kind of

(26:40):
like going to a restaurant and likeyelling at the waiter and then you don't
know what they're going to do withyour food in the back. Thank you.
That's the same thing, same effect, in fact, so I found
they they also helped me. Andit's interesting because with my first one towards
an intern who spoke on my behalfand we become very good friends. And

(27:02):
let me let you know this,she ended up becoming a high risk obstetrics
doctor because she said I inspired herand we became very good friends. And
do you know that fast forward?She also was she was she had a
maternal issue, had a premie andwho did she seek advice from me?

(27:26):
And she's like one of myne Andshe also helped me with my youngest.
Now she was a high risk doctorand she told me what to do,
and now I was, I mean, because you realize they're also human and
a doctor might be I mean,she's a mother at the end of the
day. So that was her firstchild and she's like, oh my god,
she never thought she would be inthat spot. And you never know

(27:48):
exactly and this was like over tenyears after we became friends. It's all
reciptacle for sure. Yeah, SoI want to thank you so much.
I really appreciate you. Yes,I love you, know what you're doing
and how you're advocating in this space, and I mean I learned a lot
today about sepsis. Where can peoplego to find out more about the organization

(28:11):
that you're working out with and howcan people can connect with you? I
believe it's a national Sepsis Alliance.Okay, yes, awesome? And then
how can people connect with you?I'm on Instagram, Busy, Motsico and
in as well as I'm on LinkedIn, Matsico and in, so that's best

(28:33):
getting me? Well you can google? Okay, awesome, Well, thank
you for coming here today. Thanhow can we support your podcast? Just
share it, share it, sharethe links, share the content. You
know, the more we can groworganically and more women can get this information,
the more lives can be changed andhopefully saved. And we appreciate that.

(28:53):
So like, share and support we'lldo all right? All right,
Well, thank you for being hereon Eternal. I am Kenya Gibson here
with the Lovely Bossy and we willhave some more episodes dropping soon. Until
next time,