April 11, 2025 • 11 mins
This week marks Black Maternal Health Week, a time to raise awareness about the alarming disparities in care experienced by Black mothers and babies. In this episode, we hear from Jenne Johns, founder of Once Upon a Preemie, a nonprofit dedicated to supporting Black families navigating the challenges of premature birth. Jenne recently testified before Philadelphia City Council to advocate for increased awareness, education, and culturally responsive support for families impacted by preterm birth. Learn more about her powerful mission and the resources available through her organization:
🌐 www.onceuponapreemie.org
📸 Instagram: @onceapreemie
📘 Facebook: @onceuponapreemie
💼 LinkedIn: once-upon-a-preemie-academy #BlackMaternalHealthWeek #OnceUponAPreemie #PrematurityAwareness #EquityInCare #Podcast
🌐 www.onceuponapreemie.org
📸 Instagram: @onceapreemie
📘 Facebook: @onceuponapreemie
💼 LinkedIn: once-upon-a-preemie-academy #BlackMaternalHealthWeek #OnceUponAPreemie #PrematurityAwareness #EquityInCare #Podcast
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Good morning, and welcome to Insight, a show about empowering
our community. I'm Lorraine Ballad Morrow. In today's show, we'll
tell you about the Coalition to Defend Democracy's Mass Rally.
We'll also talk about the desperate need for organ donors
in communities of color with Gift of Life, but first,
in honor of Black Maternal Health.
Speaker 2 (00:19):
Week, Janey John's President, Once Upon a Premie.
Speaker 1 (00:23):
Janey John's Once Upon a Premie Founder and CEO, executive director, President,
president and president and amazing organization and a very needed one.
I wonder if you can tell us your story, because
your story really is one that many Black women have experienced,
and many women of color have experienced, and that is
(00:45):
the failure of the medical system in addressing the issue
of prematurity and dealing with women's Black women's health.
Speaker 2 (00:54):
Tell us more. Thank you so much for having me today, Lorraine.
I unfortunately join the rank of about one in five
African American women who give birth in this country and
give birth early. So at the time that I was
expecting my son, I was educated, employed, and had the
(01:15):
best health insurance that Philadelphia had to offer us. Even
with making every prenatal care visit, eating healthy, exercising, doing
all the necessary things to make it to a full
term birth. It just didn't happen for us. Unfortunately. My
son was born fourteen weeks early. He was a twenty
six weeker, and he weighed less than two pounds. We
(01:36):
had a nearly three month journey through the neonatal intensive
care unit that I wasn't prepared for and that did
not provide the culturally appropriate or culturally supportive environment that
I believe our family needed and more importantly, that we deserved.
Speaker 1 (01:55):
There's so much associated with prematurity. First of all, it
is the end of a dream, right. It's like when
anyone is pregnant or expecting, you have a certain dream
and ideal of what's going to happen. You're going to
have a healthy baby and all is good. So when
prematurity happens, that whole vision gets thrown thrown out and
(02:19):
you have to deal with so many different issues. And
you talk about the lack of culturally competent support in
your medical journey, and I wonder if you can talk
a little bit more about what that looked like and
what you had hoped you would be able to receive
from the doctors.
Speaker 2 (02:35):
That's an amazing question and one that I don't think
I've ever been asked. On this journey. I've given answers
around it, around what I had hoped, what have happened,
But we weren't met with a healthcare team or a
staff that looked like us, which more times than not,
in this country, the healthcare professionals don't have the same
(02:57):
cultural background, racial ethnic with the patient population that they're serving.
We just don't have the diversity medically. So I was
used to that. What I was not prepared for was
being ignored, being dismissed, being yelled at sometimes what and
being encouraged by the director of nursing in this hospital
(03:18):
to build a relationship with another African American and employed
woman like myself because of my job title. So the
backstory is the very first time my son was healthy
enough to come out of his is elect for us
to do skin to skin care. The director of nursing
comes by our iselect and proceeds to pull up a
chair to ask me what I did for a living.
And I'm completely confused because this was one of the
(03:41):
most precious moments that I had to experience something normal
along my parenthood journey. So for two and a half weeks,
I haven't been able to hold my child. This is
the first time I'm able to hold him, and I'm
being asked what I do for a living, which has
no relevance to this precious moment. And she proceeds to
go so up the list, starting at supervisor, manager, and
(04:02):
when she landed at director, she's encouraging me to go
build a relationship with another African American and employed woman
in the hospital unit in which I tried to. However,
she was our respiratory therapist on clinical rotation every two weeks,
so she wasn't in the unit every day. But why
is it that, as an advocate for my son, who
just so happened to be educated and employed, couldn't have
(04:25):
a good relationship with the rest of the clinical nurses
or care team members that were surrounding us.
Speaker 1 (04:30):
And how did that make you feel? At the bottom line,
how did you react to being treated that way?
Speaker 2 (04:37):
Well, I didn't have a reaction. Initially, I had to
ignore it and tuck it away because I needed to
be a normal parent in that moment. However, five years later,
once once upon a PREI nonprofit organization was born. One
of the primary services that we offer as cultural competency
or implicit bias training to healthcare professionals. How do you
have necessary and important conversations with patients who don't look
(05:01):
like you without causing harm, damage or disrespect. How do
you not further discriminate against the population who was already
untrusting of the healthcare system. How do you build better
rapport and relationship and just deliver human care. That's all
we're asking for to be looked upon and treated like
(05:22):
where your brother and sister in the human race, and
not segregated based on our skin color. Yeah.
Speaker 1 (05:30):
Well, we've seen so many examples of that. I always
bring up Sermena Williams because she was treated in a
way that she felt was discriminatory and actually life threatening
because she wasn't heard that. She said, you know, this
is what's happening. I feel my body something's wrong. But
the doctors ignored her. And when it comes to something
(05:52):
as important and precious as the birth of a baby,
you're hoping that the medical profession will be there one
percent for you. And I wonder, what do you talk
about cultural competence and what once upon a pre MEI
is able to do to give training. What are some
of the things that you tell these medical professionals to
(06:15):
do and to say and to be aware of so
that they can be better at what they do.
Speaker 2 (06:21):
Exactly what you just said, Lorraine, It's very important to listen.
Who knows your body better than you? And if you
know during one of the most what's the word that
I'm looking for, they say that I'm delivering a baby
as the closest a woman can become to death. Right,
So if you know in that moment that you are
(06:42):
already traumatized from birthing a human being, and then on
top of that, something is off, and a woman is
articulating that in the most calm and respectful way that
she can, it's time for the healthcare system to listen.
There's even more urgency when there's tears, pain and blood involved.
Why do black women have to suffer at the hands
(07:03):
of a clinical or a healthcare system that will allow
them to bleed to death? Or like you were saying,
just be ignored when that pain is being expressed. And
not just mom, not just the birthing woman. We have
to be supportive of the unit who is with the mom,
whether that is the doula, whether that is mom's mom
(07:24):
or grandmom, or even her husband or significant other. So
there are so many instances in our trainings where we
ask fathers to speak about their experiences being a part
of the support system and the care team surrounding the
birthing mom, and they were equally ignored and discriminated. Again,
so we just have to help combat bias and stereotypes
(07:48):
that just don't fit the bill of people showing up
wanting to give birth, wanting to stay healthy and then
thrive so that they can be the parents that they
were so excited to be at the time that they
learned that they were going to be parents.
Speaker 1 (08:01):
Right, and parents particularly, I have to say, especially the mom,
go through so much in their emotions because I think
we're always quick to blame ourselves, right while we know
that prematurity can be totally Certainly prenatal health and cares
is important. But you can do everything, take all the vitamins,
(08:22):
not drink, not smoke, do all the things that you're
told to do, and you can still have a premature
birth and they still don't know why. That's something that's
still a mystery to researchers into this very thing. So
combine that all those emotions that you're feeling right as
a mother and feeling very responsible even when you're not,
(08:44):
and having the stress of being so worried about your
baby and then to have not to be heard and
not to be treated with the utmost respect and care
is just a makes me so angry. Now, you took
that distress and that anger, all those emotions, and you
(09:04):
made something very positive out of it, and that is
creating your organization. Once upon a Premie tell us more.
You talk about training professionals, what else do you, guys do?
Speaker 2 (09:13):
We also leave policy advocacy efforts to make sure that
the lived experiences of all blackbirthing women, not just Premie
moms and Premie families, are integrated into black maternal health
legislation and honestly, Lorraine, all maternal and health legislation. We
want to make sure that as policy makers and decision
makers and clinicians are looking at best practices and strategies
(09:36):
to roll out at the national, state and local levels.
It's not just based on research and data, because there
are people with real experiences and real outcomes that are
supporting that data that need to be integrated and included
in these policy and legislative bills. And more importantly, we
believe it once upon a Premier that the people who
(09:56):
are impacted the most by these issues are the solutions
to the challenge. We just need to see at the table.
We just need to be asked, we just need to
be included, and until that time comes, we advocate to
insert our position and our needs into those pieces of legislation.
Speaker 1 (10:10):
Yeah, when you don't have a seat at the table,
pull up a chair, right right. That's what a wise
woman once said. So if people want more information about
once upon a PREMI, how do they find you?
Speaker 2 (10:20):
They can find us on our website at once upon
a Premi dot org. We are also on Instagram at
once a Premie and on Facebook at once upon a Premi.
Speaker 1 (10:31):
One final message that you'd like to send to our
listeners out there.
Speaker 2 (10:35):
There's hope. I know we talked about a lot of
really hard things during this interview, but there are so
many dynamic black women, love black women serving nonprofit organizations
not just here in the city of Philadelphia or across
the Commonwealth of Pennsylvania, but across the nation who offer
amazing services that we may never hear about, never read about,
in that our healthcare system may never share with us,
(10:57):
but we are here to support you. We are here
to accept you with open arms and to be your
advocates to make sure you have a healthy and thriving
pregnancy and post pregnancy journey.
Speaker 1 (11:11):
Beautiful, thank you so much for joining us today.
Speaker 2 (11:13):
Thank you for having me, Lorraine.
Speaker 1 (11:15):
We'll have more insight after these messages.
Good morning, and welcome to Insight, a show about empowering
our community. I'm Lorraine Ballad Morrow. In today's show, we'll
tell you about the Coalition to Defend Democracy's Mass Rally.
We'll also talk about the desperate need for organ donors
in communities of color with Gift of Life, but first,
in honor of Black Maternal Health.
Speaker 2 (00:19):
Week, Janey John's President, Once Upon a Premie.
Speaker 1 (00:23):
Janey John's Once Upon a Premie Founder and CEO, executive director, President,
president and president and amazing organization and a very needed one.
I wonder if you can tell us your story, because
your story really is one that many Black women have experienced,
and many women of color have experienced, and that is
(00:45):
the failure of the medical system in addressing the issue
of prematurity and dealing with women's Black women's health.
Speaker 2 (00:54):
Tell us more. Thank you so much for having me today, Lorraine.
I unfortunately join the rank of about one in five
African American women who give birth in this country and
give birth early. So at the time that I was
expecting my son, I was educated, employed, and had the
(01:15):
best health insurance that Philadelphia had to offer us. Even
with making every prenatal care visit, eating healthy, exercising, doing
all the necessary things to make it to a full
term birth. It just didn't happen for us. Unfortunately. My
son was born fourteen weeks early. He was a twenty
six weeker, and he weighed less than two pounds. We
(01:36):
had a nearly three month journey through the neonatal intensive
care unit that I wasn't prepared for and that did
not provide the culturally appropriate or culturally supportive environment that
I believe our family needed and more importantly, that we deserved.
Speaker 1 (01:55):
There's so much associated with prematurity. First of all, it
is the end of a dream, right. It's like when
anyone is pregnant or expecting, you have a certain dream
and ideal of what's going to happen. You're going to
have a healthy baby and all is good. So when
prematurity happens, that whole vision gets thrown thrown out and
(02:19):
you have to deal with so many different issues. And
you talk about the lack of culturally competent support in
your medical journey, and I wonder if you can talk
a little bit more about what that looked like and
what you had hoped you would be able to receive
from the doctors.
Speaker 2 (02:35):
That's an amazing question and one that I don't think
I've ever been asked. On this journey. I've given answers
around it, around what I had hoped, what have happened,
But we weren't met with a healthcare team or a
staff that looked like us, which more times than not,
in this country, the healthcare professionals don't have the same
(02:57):
cultural background, racial ethnic with the patient population that they're serving.
We just don't have the diversity medically. So I was
used to that. What I was not prepared for was
being ignored, being dismissed, being yelled at sometimes what and
being encouraged by the director of nursing in this hospital
(03:18):
to build a relationship with another African American and employed
woman like myself because of my job title. So the
backstory is the very first time my son was healthy
enough to come out of his is elect for us
to do skin to skin care. The director of nursing
comes by our iselect and proceeds to pull up a
chair to ask me what I did for a living.
And I'm completely confused because this was one of the
(03:41):
most precious moments that I had to experience something normal
along my parenthood journey. So for two and a half weeks,
I haven't been able to hold my child. This is
the first time I'm able to hold him, and I'm
being asked what I do for a living, which has
no relevance to this precious moment. And she proceeds to
go so up the list, starting at supervisor, manager, and
(04:02):
when she landed at director, she's encouraging me to go
build a relationship with another African American and employed woman
in the hospital unit in which I tried to. However,
she was our respiratory therapist on clinical rotation every two weeks,
so she wasn't in the unit every day. But why
is it that, as an advocate for my son, who
just so happened to be educated and employed, couldn't have
(04:25):
a good relationship with the rest of the clinical nurses
or care team members that were surrounding us.
Speaker 1 (04:30):
And how did that make you feel? At the bottom line,
how did you react to being treated that way?
Speaker 2 (04:37):
Well, I didn't have a reaction. Initially, I had to
ignore it and tuck it away because I needed to
be a normal parent in that moment. However, five years later,
once once upon a PREI nonprofit organization was born. One
of the primary services that we offer as cultural competency
or implicit bias training to healthcare professionals. How do you
have necessary and important conversations with patients who don't look
(05:01):
like you without causing harm, damage or disrespect. How do
you not further discriminate against the population who was already
untrusting of the healthcare system. How do you build better
rapport and relationship and just deliver human care. That's all
we're asking for to be looked upon and treated like
(05:22):
where your brother and sister in the human race, and
not segregated based on our skin color. Yeah.
Speaker 1 (05:30):
Well, we've seen so many examples of that. I always
bring up Sermena Williams because she was treated in a
way that she felt was discriminatory and actually life threatening
because she wasn't heard that. She said, you know, this
is what's happening. I feel my body something's wrong. But
the doctors ignored her. And when it comes to something
(05:52):
as important and precious as the birth of a baby,
you're hoping that the medical profession will be there one
percent for you. And I wonder, what do you talk
about cultural competence and what once upon a pre MEI
is able to do to give training. What are some
of the things that you tell these medical professionals to
(06:15):
do and to say and to be aware of so
that they can be better at what they do.
Speaker 2 (06:21):
Exactly what you just said, Lorraine, It's very important to listen.
Who knows your body better than you? And if you
know during one of the most what's the word that
I'm looking for, they say that I'm delivering a baby
as the closest a woman can become to death. Right,
So if you know in that moment that you are
(06:42):
already traumatized from birthing a human being, and then on
top of that, something is off, and a woman is
articulating that in the most calm and respectful way that
she can, it's time for the healthcare system to listen.
There's even more urgency when there's tears, pain and blood involved.
Why do black women have to suffer at the hands
(07:03):
of a clinical or a healthcare system that will allow
them to bleed to death? Or like you were saying,
just be ignored when that pain is being expressed. And
not just mom, not just the birthing woman. We have
to be supportive of the unit who is with the mom,
whether that is the doula, whether that is mom's mom
(07:24):
or grandmom, or even her husband or significant other. So
there are so many instances in our trainings where we
ask fathers to speak about their experiences being a part
of the support system and the care team surrounding the
birthing mom, and they were equally ignored and discriminated. Again,
so we just have to help combat bias and stereotypes
(07:48):
that just don't fit the bill of people showing up
wanting to give birth, wanting to stay healthy and then
thrive so that they can be the parents that they
were so excited to be at the time that they
learned that they were going to be parents.
Speaker 1 (08:01):
Right, and parents particularly, I have to say, especially the mom,
go through so much in their emotions because I think
we're always quick to blame ourselves, right while we know
that prematurity can be totally Certainly prenatal health and cares
is important. But you can do everything, take all the vitamins,
(08:22):
not drink, not smoke, do all the things that you're
told to do, and you can still have a premature
birth and they still don't know why. That's something that's
still a mystery to researchers into this very thing. So
combine that all those emotions that you're feeling right as
a mother and feeling very responsible even when you're not,
(08:44):
and having the stress of being so worried about your
baby and then to have not to be heard and
not to be treated with the utmost respect and care
is just a makes me so angry. Now, you took
that distress and that anger, all those emotions, and you
(09:04):
made something very positive out of it, and that is
creating your organization. Once upon a Premie tell us more.
You talk about training professionals, what else do you, guys do?
Speaker 2 (09:13):
We also leave policy advocacy efforts to make sure that
the lived experiences of all blackbirthing women, not just Premie
moms and Premie families, are integrated into black maternal health
legislation and honestly, Lorraine, all maternal and health legislation. We
want to make sure that as policy makers and decision
makers and clinicians are looking at best practices and strategies
(09:36):
to roll out at the national, state and local levels.
It's not just based on research and data, because there
are people with real experiences and real outcomes that are
supporting that data that need to be integrated and included
in these policy and legislative bills. And more importantly, we
believe it once upon a Premier that the people who
(09:56):
are impacted the most by these issues are the solutions
to the challenge. We just need to see at the table.
We just need to be asked, we just need to
be included, and until that time comes, we advocate to
insert our position and our needs into those pieces of legislation.
Speaker 1 (10:10):
Yeah, when you don't have a seat at the table,
pull up a chair, right right. That's what a wise
woman once said. So if people want more information about
once upon a PREMI, how do they find you?
Speaker 2 (10:20):
They can find us on our website at once upon
a Premi dot org. We are also on Instagram at
once a Premie and on Facebook at once upon a Premi.
Speaker 1 (10:31):
One final message that you'd like to send to our
listeners out there.
Speaker 2 (10:35):
There's hope. I know we talked about a lot of
really hard things during this interview, but there are so
many dynamic black women, love black women serving nonprofit organizations
not just here in the city of Philadelphia or across
the Commonwealth of Pennsylvania, but across the nation who offer
amazing services that we may never hear about, never read about,
in that our healthcare system may never share with us,
(10:57):
but we are here to support you. We are here
to accept you with open arms and to be your
advocates to make sure you have a healthy and thriving
pregnancy and post pregnancy journey.
Speaker 1 (11:11):
Beautiful, thank you so much for joining us today.
Speaker 2 (11:13):
Thank you for having me, Lorraine.
Speaker 1 (11:15):
We'll have more insight after these messages.
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