Ep.7/ Perinatal and Neonatal Birth Inequities and The Experiences Of Families Who Have Preemie Babies with Jenne Johns

Written By Jillian Baker
 

Perinatal and Neonatal Birth Inequities and The Experiences Of Families Who Have Preemie Babies with Jenne Johns

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  • Note: This transcription has been created with a help of an AI thus errors and mistranscriptions may be present.


    [00:00:00] Jenne Johns: Hello, maternal health 9 1 1. What's your emergency?

    [00:00:08] Jenne Johns: 1,

    [00:00:09] Dr. Jill Baker: 2, 3, 4.

    [00:00:14] Dr. Jill Baker: Hi, I'm Dr. Joe Baker. I'm a wife, a mother, a community health scholar and executive director and a fertility coach. More than 12 years ago, I was on my own infertility journey. Since then, I've made it my personal mission to help anyone who is on their own journey to become a parent, as well as shed light on infertility and maternal health experiences of bipo women and couples.

    [00:00:42] Dr. Jill Baker: Now let's begin this week's episode of Maternal Health 9 1 1.

    [00:00:54] Dr. Jill Baker: Hello listeners and welcome to this very special episode of Maternal Health 9 1 1. I am thrilled to have with you today a very special friend and colleague who I had the pleasure to meet virtually last year. We were talking a little bit about that experience before we started recording.

    [00:01:18] Dr. Jill Baker: Both of us were selected to be a part of this very important health equity panel discussion last year by the Philadelphia College of Osteopathic Medicine in which we were talking about birth disparities, prenatal disparities, maternal health disparities among black women. And.

    [00:01:43] Dr. Jill Baker: One, we had a lot of people that were on the actual panel, which is not common. You usually have, maybe 10, 20 people. I think there were over a hundred people on the actual panel. And then we had, it was posted on their, the school's website and sent out, and so their students can reference it for further education.

    [00:02:06] Dr. Jill Baker: It was a big thing and I think what was great about that experience was, I know for me that sometimes in this work you sometimes may feel alone or you might feel like, am I making a big deal about these inequities that continue to happen for black women? And I know that event for me, Really helped me confirm that no, this is important, this work is important.

    [00:02:39] Dr. Jill Baker: There are people nationally who are working on these issues in their own ways. It was also very interdisciplinary. There were a lot of public health folks like myself and my guest today. There were medical doctors, there were professors. So it was just so collaborative. And the truth is that in order for us to make real changes in these inequities and inequalities, it's going to have to be a multidisciplinary approach.

    [00:03:12] Dr. Jill Baker: And I think that for me, again, it was one of those moments just affirming for me, you're on the right path. You are being brought into the presence of other people and powerful and amazing black women at that who all of us are on in this work and have had our own experiences as well that have brought us to this work.

    [00:03:37] Dr. Jill Baker: And so today we're going to specifically talk about perinatal and neonatal birth inequities and the experiences of families who have preemie babies. And so just some information for those of you who may not know how much of an issue this particular disparity is in our country. And these are new stats from March and Dimes.

    [00:04:04] Dr. Jill Baker: So you all are all aware in our country one in 10 babies is born preterm in the United States. However, the rate of preterm birth for black infants is the highest currently at 14%. And so this is something that really should make. A little angry because it shouldn't be that, it shouldn't be that way, this way.

    [00:04:30] Dr. Jill Baker: And there are a number of factors that are, responsible for these disparities in preterm birth. And we're gonna talk about those today on this show. As well as my sister friends, journey, personal journey into this particular work. And so today I have the brilliant, the amazing and the dope Janee Johns, who is gonna shed light on this topic for us.

    [00:04:58] Dr. Jill Baker: And what we all can do to change it, because we all have to be part of this work. And so you all know Janae Johns is a Philadelphia native. And so for those of you who may not know Philly is my second home. She has her master's in public health. We have so much stuff in common. I have my doctoral degree in public health.

    [00:05:21] Dr. Jill Baker: She went to Temple for her MPH program. I did go to Drexel. Still they're very close. Proximity and Temple and Drexel mph. H students, I think are always together especially in Philly. She is a national health equity thought leader, an author and advocate for reducing healthcare disparities while advocating for the needs of her own son.

    [00:05:46] Dr. Jill Baker: Janae wrote once upon a preemie. The first of its kind children's book written for parents of preemies while in the nicu, a graduate of the Disparities leadership program at Harvard University Medical School. Janae has over a decade of experience advocating for policy and community changes to improve health equity and health outcomes for low income communities.

    [00:06:14] Dr. Jill Baker: She also led quality improvement in health equity transformation strategies with the nation's largest health insurance companies. Janae is currently president of Once Upon a Preemie when their goals and their strategies also are for helping to pioneer solutions for neonatal equity to center black preemie family experiences.

    [00:06:42] Dr. Jill Baker: And lastly, with all the things that she does, She is also Health Equity column editor for Neonatal Today, so Maternal health 9 1 1 Family. Please welcome Ms. Janae John to the show.

    [00:06:59] Jenne Johns: Hi Janae. Hi, Jill. Thank you. Thank you. Thank you for that. Very warm welcome. An introduction to maternal Health 9 1 1.

    [00:07:08] Jenne Johns: I'm excited to be here.

    [00:07:10] Dr. Jill Baker: I'm excited to have you. And like I, I said I'm so thankful that we were on that same panel together that just brought together so many Amma amazing women from all over this country who are, working on maternal health disparities, in their own.

    [00:07:33] Jenne Johns: Absolutely. I absolutely love what you, how you started to frame that black Maternal Health Week panel with the Philadelphia College of Osteopathic Medicine.

    [00:07:43] Jenne Johns: Thank you for sharing that. You felt like you were in a safe space and you were affirmed in the work that you're doing and that you didn't feel alone. Because sometimes as healthcare professionals and black healthcare professionals, and especially in this maternal and child health space, it does get a bit isolating at times.

    [00:08:00] Jenne Johns: Yes. To be on a panel with other like minds who were leading powerful and transformational work, and then to be met by students who were eager and oh my gosh, weren't they to change the world. It was like, we are doing this. We are in the right place at the right time. In the right school. The students

    [00:08:16] Dr. Jill Baker: Made it even better.

    [00:08:18] Dr. Jill Baker: They

    [00:08:18] Jenne Johns: did. They're

    [00:08:19] Dr. Jill Baker: because they really understood.

    [00:08:22] Jenne Johns: They understood and they are the next wave of change agents. So I'm just honored to have been in their presence and to have met you on that panel. And then me too.

    [00:08:33] Dr. Jill Baker: And here we're, and I remember reaching out to you, I was like gimme your, make sure I have your, I was type I think typing to you in the Zoom chat.

    [00:08:41] Dr. Jill Baker: I was like, make sure I need your email

    [00:08:43] Jenne Johns: address. Yes. And we've been connected via LinkedIn ever since.

    [00:08:47] Dr. Jill Baker: I still need, we still need to see each other in person since we're so close. So we have to make each other, we have to make that happen. Yes.

    [00:08:54] Jenne Johns: We have to get off of Zoom and LinkedIn.

    [00:08:56] Dr. Jill Baker: Yes. I know.

    [00:08:57] Dr. Jill Baker: I think it's just the process of post pandemic and still, a little bit of covid, but it's making those transitions of Okay. It's okay to see people in person again. It's, is

    [00:09:09] Jenne Johns: it okay to give hugs yet? I've.

    [00:09:19] Dr. Jill Baker: Oh my gosh, it's so funny. And then yeah, and then we have so much in common with our public health backgrounds and going to school in Philly Philly, having, ah, Philly has probably so many numerous MPH programs. But Temple, I went to temple for my ma for my master's in counseling psychology.

    [00:09:41] Dr. Jill Baker: So I was at the School of Education while I was there. Okay. But I loved Temple, I loved my experience, I loved it. I loved it.

    [00:09:50] Jenne Johns: Wonderful. You loved being a temple owl. I did.

    [00:09:53] Dr. Jill Baker: I did. Yeah, I did. I did. So before we go into, I really want you to walk us through, for the first part of the episode of our discussion, your personal journey in this work with your son.

    [00:10:11] Dr. Jill Baker: The first question that I want to ask you that I ask every guest is, why is maternal health an emergency in this country?

    [00:10:25] Jenne Johns: That is such a loaded question. You started the interview off with our most current preterm birth statistics. We are one of the wealthiest nations across the globe, and we can't figure out how to keep black moms and babies alive pre and post delivery.

    [00:10:44] Jenne Johns: And it just feels so alarming and disheartening that we also can't keep babies cooking full term. Yes, and to add insult to injury, when you continue to read the statistics and the peer review journal articles and data reports, unfortunately black moms and babies continue to top those charts. And it's not that the country can't afford to figure out how to keep us alive and keep our babies cooking full term.

    [00:11:13] Jenne Johns: We are in crisis mode because the women who, the women and families who have experienced these inequities during their birthing journey aren't being listened to, not being respected and not being taken serious when we report a concern or a plate during pregnancy, during delivery, or even in the nicu, which was our family's journey and experience.

    [00:11:35] Jenne Johns: And so the crisis we're in is unfortunately one that is 1000% preventable and avoidable if we're listened to, and if the right resources are put in place to help prevent these alarming statistics to continue to grow and climb.

    [00:11:54] Dr. Jill Baker: And as you said it's at every kind of spectrum of the whole experience with.

    [00:12:03] Dr. Jill Baker: Having a child if you know you're carrying your child biologically or that's your desire, and even if you have issues with getting pregnant, then once you get pregnant, then there's the transition in worrying about, and you said it right on the eloquently, that worried about, and I know I was worried and both in my pregnancies and both of them were high risk.

    [00:12:30] Dr. Jill Baker: And my first being my twin pregnancy, that how long the baby, my baby, how long were they going to stay? Because you know that the longer they stay, the better outcomes that they will have upon delivery. But knowing all the odds that are against black women, educated black women, us having the worst.

    [00:12:57] Dr. Jill Baker: Birth outcome disparities, which is another troubling part of this whole puzzle. So I know that was, always a con, a real concern of mine. So for you, when you were pregnant with your son, what, like what was going on, with you, with your pregnancy? How did you know, did it start, how were you feeling?

    [00:13:22] Dr. Jill Baker: You. So

    [00:13:24] Jenne Johns: I'm always honest when I answer this question cause I was in my early thirties living my best life. When I say best life, I was living my best life. I love what he was expecting. And so he was a welcomed addition to that best life because a degrees, I traveled the world. I was a new homeowner. I had the title at the corporate job, I had the income to follow.

    [00:13:47] Jenne Johns: And it was just like, wow. He was icing on the cake when I learned that he, when I learned that I was expecting. On the same token, unfortunately society was just at the beginning of coming to terms with the loss of Trayvon Martin. Oh. And yes, all of the mental and emotional and physical kinda elements of just thinking to myself, my goodness, I'm carrying a black child in America who could be.

    [00:14:18] Jenne Johns: Labeled this correctly at some point in his journey and taken away from me just because of co just because of the color of his skin. Yes.

    [00:14:26] Dr. Jill Baker: Yeah. Trayvon, I'm glad you brought up Trayvon cuz that Trayvon

    [00:14:31] Jenne Johns: before Floyd, before 2020 there was trade before Trayvon, there were so many others, but this was the first time, it was like, not the first time, but in our generation that it was televised and on social media and then the verdict and the outcome, it was ugly and it was scary and it was traumatizing.

    [00:14:49] Jenne Johns: And on the same token I wanna say I had a geriatric pregnancy cuz I wasn't here. How old were you? I was in my early thirties. I was in my early thirties. So it's not that Jerry, but it was like the beginning of Jerry. They tell

    [00:15:01] Dr. Jill Baker: you that your typical geriatric doctors say ob, g y n say, Have a geriatric pregnancy when you're 35 and over.

    [00:15:11] Dr. Jill Baker: All right. So I wasn't 35, so then it wasn't a

    [00:15:14] Jenne Johns: geriatric, all so I said before I was like, pre Jerry, I was pre Jerry, I was on the road to Jerry, but you, I wasn't in my teen, in my, I wasn't in my twenties. Which is fine. Because I also wanted to wait to have a child until I could, same. Provide and be a little to my child. But on the same token healthcare side, I was working in a high. A highly stressful environment. I was the first and only director of health disparities for one of the nation's largest Medicaid managed care insurance companies. And although it was a necessary role, I was treated like the unwanted stepchild.

    [00:15:54] Jenne Johns: And so I faced a lot of challenges in my career that I believe I carried with me biologically and during my pregnancy.

    [00:16:03] Dr. Jill Baker: And that is called, actually called weathering.

    [00:16:06] Jenne Johns: That's the point I was about to raise next. Jill. For so many African American women in this country, we are weathering life storms before we even get pregnant, that show up in our wombs and contribute to some of these alarming disparities.

    [00:16:22] Jenne Johns: And Beyond what happens at the point of receiving good or bad healthcare. We need to address how black women are treated, how they're paid, the levels of racism and microaggressions that they face on a daily basis before they even learn yes, or get pregnant so that they can get to a healthier, get to and through a healthier pregnancy.

    [00:16:43] Jenne Johns: So at the time of my son's birth, I did deliver early and I just learned a very beautiful term that I'm going to adopt and use from now on from my colleague, Dr. Kenika Harris at the Black Women's Health Imperative. I had a belly birth. I had never heard that term before, but I'm going, I haven't either.

    [00:17:01] Jenne Johns: What does that mean? I had a c-section. But having a c-section has such a negative connotation retraumatizes you every time you have to say and then relive that experience. But my son, didn't come vaginally. He came through my belly. Thank you. That means

    [00:17:18] Dr. Jill Baker: I had

    [00:17:19] Jenne Johns: two belly births. Yeah.

    [00:17:21] Jenne Johns: Love belly birth. We had belly births. And my son decided to introduce himself to his father and myself and our family 14 weeks early. He had a point. Okay. Okay. He's on mission and he still is. Okay. Okay. Clear about that. He's on a mission very fast at everything that he does. It was actually what's called a footling breach.

    [00:17:41] Jenne Johns: My son turned himself around in utero, kicked his foot through my cervix and the hospital, and the doctors gave him exactly eight hours to decide for himself. Was he gonna come on his ear on his own? Excuse me. Or did they need to go on for an emergency belly birth? Okay. And so we had an emergency belly birth and he was the tiniest little thing.

    [00:18:06] Jenne Johns: But I knew he was special. From the moment I laid my eyes on him, my son weighed one pound, 15.3 ounces, so he was barely there. He was so barely there. He was almost transparent. Wow. And we had a long, we had a very long and difficult almost three month journey through the neonatal intensive care unit until he was discharged to go home and during our NICU journey, unfortunate for the hospital system that we were in, a lot of the work that I was leading in my nine to five around health disparities and delivering culturally competent care and appropriate care and.

    [00:18:46] Jenne Johns: Finding ways to, communicate with patients respectfully and increase patient satisfaction and patient communication. When I say none of that was reflected in the care that we received. None of it. And it pissed me off to my core every day that I had to walk through the doors of that nicu.

    [00:19:04] Dr. Jill Baker: Lemme ask you, so lemme ask you this Yep. For, three months. That's a long time. Yeah. That was our, so when did you

    [00:19:13] Jenne Johns: first home,

    [00:19:13] Dr. Jill Baker: there's typically in these experiences, at hospitals, there's typically maybe one thing that happens or doesn't happen. The second thing, first time you're like, eh, maybe it's not, maybe it's not racism, maybe it's not discrimination, but then something else happens and then oftentimes your gut is telling you that something is off here with how.

    [00:19:42] Dr. Jill Baker: You maybe getting treated. So what's, were these things happening for you and your hu and your husband while you all were in this NICU experience?

    [00:19:54] Jenne Johns: Absolutely. The lack of respectful communication, the microaggressions, the difference in the way the African American families were treated and communicated with versus the white families was just glaring.

    [00:20:07] Jenne Johns: It was so painfully obvious and I couldn't sit quietly around it. And I share this story when I walk about the country to share our NICU journey and experience. But I never, I'll never forget the first time that my son was strong enough to come out of his isolette or the bed that he had to live in with all sorts of equipment attached to him to help him breathe and to live right.

    [00:20:28] Jenne Johns: First time he was strong enough to come out of the isolette so we could do what's called kangaroo care, which is skin to skin care. We put on a button, big button down shirt, and they're already, just in a diaper and they get to come out of their bed and come cuddle with mom or come cuddle with that for a few minutes until they're strong enough to do it longer.

    [00:20:47] Jenne Johns: Oh, and he was almost two weeks old before we could do this skin. The skin care

    [00:20:54] Dr. Jill Baker: is Sister a typical time period for it to take about

    [00:20:59] Jenne Johns: two weeks. It depends on the birth and the science and the strength of the baby. Okay. So my sister was with me at that time. Dad was at work. She was, my caretaker.

    [00:21:11] Jenne Johns: She was with us for the day and the director of the nurses, the NICU nurses came by our bedside and said, Janae, what do you do for a living? And I'm confused. I'm already confused by this question. Cause again, this is one of the most vulnerable and intimate antenna mommy moments that I've had with my children, right?

    [00:21:32] Jenne Johns: This is probably the one of the first things that I get to do to normalize this very abnormal experience. And the first question she asked me is not, how are you doing? Are you excited to hold your baby today? How is he doing? Who's this person with you by your bedside, Janae, what do you do for a living?

    [00:21:48] Jenne Johns: And I'm like, why? And she said, are you a, she starts as supervisor. Are you a supervisor at work? I said, no. She said, are you a manager at work? I said, no, I'm a director. Why? And she goes I see women like you don't do well in our nicu. I encourage you to build a relationship with our respiratory therapist.

    [00:22:11] Jenne Johns: And she told me her name. She's also an educated and employed African American woman in this nicu. Mind you, she was the only African American woman in that NICU who was on clinical rotation every two weeks. So it wasn't like she was there, the only one, the only every two weeks. Every two weeks. And this was my child's respiratory therapist.

    [00:22:30] Jenne Johns: And unfortunately I couldn't build that type of relationship with her because I didn't see her enough. One. And there were two respiratory therapists, and so they swapped. So it was her, sometimes it was another Caucasian respiratory therapist the other times, but the woman was preoccupied her own because she had a mother who was BA battling breast cancer.

    [00:22:49] Jenne Johns: Oh. And I felt like I would be a burden to her to single her out and build only a relationship with the one black face in the nicu because the other white Mickey nurses didn't feel like dealing with me and my attitude and I admit I was the wicked witch of the west and the east every time I walked through the door of that nicu.

    [00:23:04] Jenne Johns: But it was traumatic, it was isolating, it was confusing, it was scary. I just needed to make sure that my son was getting the care that he needed so that he would one day be strong enough to come home with me. And I didn't always get that assurance from the staff that we were, that were assigned.

    [00:23:20] Dr. Jill Baker: But there's still so many things wrong with that

    [00:23:22] Jenne Johns: question.

    [00:23:23] Jenne Johns: There's so many things wrong with every level of what that woman said to me. And again, be careful how you talk to and how you treat black women, because you never know when your story or the way that you treat them is gonna show back up again. All right, so I'm gonna preface the conversation by saying that conversation was part of what sparked everything that we are now doing once upon a premium as a nonprofit organization.

    [00:23:45] Dr. Jill Baker: So that interaction right there was like the beginning of kind of your awareness that there's something that's needed here in these experiences with black and brown mothers who are in the ni. That was one of

    [00:24:06] Jenne Johns: them. One of them, yeah. That wasn't the first. The first is when I walked through the doors of the NICU and there were no black staff.

    [00:24:12] Jenne Johns: None. There's the person who's doing equity and cultural competency work. Wait a minute, for my day job, encouraging diversification of the healthcare workforce. None. There were none. There were no black faces. There were a few other cultures and races, but no black. That's a huge, the population was more than 50% black.

    [00:24:35] Jenne Johns: The population was about 50, 70% black. We

    [00:24:38] Dr. Jill Baker: know the numbers. Wow. Wow.

    [00:24:41] Jenne Johns: When, and I say that to say, when I sat in that nicu, I wore two hat. As much as I tried to take my professional hat off, I couldn't because it was like, what am I showing? Stressing myself out at work for if the work that we're funding advocating for leading, prioritizing with hospitals and providers is not reflected in the care that my family is receiving.

    [00:25:04] Jenne Johns: I'm trying to save the world here and what's happening with my own family's journey, and I'm one of many, I'm one of many. You talk to one black NICU mom, I feel like you talk to us all. And unfortunately, a lot of black NICU admitted moms don't realize that they were treated unfairly until months or even years after they're discharged from the nicu.

    [00:25:30] Jenne Johns: Yes. And they talk to a mom like me that's wait a minute, I was treated the same way, but I didn't know, or I was communicated the same way. And it's yeah, no, none of that was right darling. None of it. So join our team as faculty so you can talk about it. And take action around

    [00:25:44] Dr. Jill Baker: it. But when you think just about the pure amount of stress, I can only.

    [00:25:50] Dr. Jill Baker: Imagine

    [00:25:52] Jenne Johns: it's when you have a NICU admission. Here's the thing, if you're employed and your company gives you maternity or paternity leave Yes. It's based on a full-term delivery.

    [00:26:03] Dr. Jill Baker: Correct?

    [00:26:04] Jenne Johns: You're right. Absolutely right. I don't even remember what it is at this point. Is it six weeks, six or eight weeks paid leave

    [00:26:10] Dr. Jill Baker: if you, six weeks typically if you have a vaginal delivery, eight weeks, if you have a ceased section.

    [00:26:17] Dr. Jill Baker: So that's based on my last pregnancy six years ago,

    [00:26:21] Jenne Johns: so I don't remember how much time that I, it's not enough as we know. I knew it was not enough, number one, and I knew that I needed to do some quick math and calculate the most important times that I would need to use that F M L A or use that paid leave.

    [00:26:35] Jenne Johns: Because even when my. Was healthy enough to be discharged from the nicu. He was not strong enough or healthy enough for me to entrust him to go to daycare. So I had to figure out how I could maintain my job, maintain our health benefits, and keep my son home at least for the first year of his life, so that I didn't put him at risk for returning to the emergency room or an intensive care unit for being around too many germs.

    [00:27:01] Jenne Johns: Cause when he was first home, he just couldn't handle those germs. Most NICU admitted babies can't handle the germ factor. So what happened? And this was a bit stressful. This was actually a highlight. One of the beauties and blessings of being in that leadership role was that. Able to do two things.

    [00:27:21] Jenne Johns: One, I was able to negotiate my presence in the office. So I went virtual many moons before

    [00:27:28] Dr. Jill Baker: covid. You went virtual before anyone else did? The whole world did.

    [00:27:33] Jenne Johns: Yeah. I was blessed to have a manager who was a nurse in her former life. And so she understood on some levels the need for me to be more present with my son Yes.

    [00:27:44] Jenne Johns: Than to be in the office. And so I was able to change my schedule so that I did a couple of things. One I took myself back to work midway through my son's NICU journey. But I only needed to work in the office half days. And then I worked virtually, which meant I worked in the nicu the other half of the days.

    [00:28:04] Jenne Johns: Oh my goodness. And then when he was discharged, I took. I think I only used two or three weeks of my paid leave, saved a few weeks for his discharge, and then used a heap of my PTL and things like that. So I could stay home with him as long as I possibly could. But even when I returned back to the office, I was just afraid that I would bring some germs from the office back home.

    [00:28:25] Jenne Johns: Yeah. And that's when I was able to do a a hybrid schedule. So two days in the office, three days out of the office so that I could care for him and keep my germ factor low. Oh my

    [00:28:34] Dr. Jill Baker: goodness. So you were supported and you were protected in

    [00:28:42] Jenne Johns: this th that was one blessing. Yeah, that was one blessing that I would not have paid someone to think could have happened during that

    [00:28:50] Dr. Jill Baker: two time.

    [00:28:51] Jenne Johns: And the other stressful part was milk production, which we don't talk about a lot in the black community. We talking a lot more about it now, but,

    [00:29:00] Dr. Jill Baker: I'm glad you brought that up to, to talk about breast

    [00:29:03] Jenne Johns: breastfeeding. Breastfeeding was like a taboo thing for me. Remember I was living my best life. Yes. You.

    [00:29:08] Jenne Johns: And when my son came, even though he came early, I had no, in even being a public health professional, I had no intentional being a breastfeeding mother Okay. Was my goal. It was, I advocated for it. I signed, I, our organization will support breastfeeding. That's good for those breast breastfeeding.

    [00:29:25] Dr. Jill Baker: I have no judgment about breastfeeding because first pregnancy, I pregnancy, I couldn't, cause I didn't get milk for my twins. I was able to breastfeed my youngest amari. So I know both experiences and knowing breastfeeding is

    [00:29:40] Jenne Johns: hard. It is hard and then it's hard. It's hard. Think about trying to express milk for a baby who can't latch on.

    [00:29:48] Jenne Johns: You have to express to go into a bottle for them to get fed through a tooth, which was my son's experience for his first two months. And because I had no desire and no interest in breastfeeding. Yeah, I didn't do any, I didn't educate myself not cause I was just like, he's just gonna be a bottle fat boy.

    [00:30:04] Jenne Johns: That's it. We're gonna take the bottle. We're gonna keep him, we're gonna keep it pushing and he'll be fine. But I had lactation consultant come to the peripartum unit when I was recovering from my belly birth surgery. And she educated me and let me know that mom's milk, breast milk was.

    [00:30:26] Jenne Johns: Liquid medicine for a NICU baby. Yeah. And that's all I needed to hear. I said this is something that will help keep him healthy. Keep him alive, or to set him on the path to help. I'll do it. And so when I first started pumping and expressing milk, it was painful. I didn't sign up for it. I was like, where is that bottle?

    [00:30:49] Jenne Johns: Where is that formula? Yeah. But it was one of the best things I could have made the investment in for him and for myself. Because that is one thing that helped to normalize that very abnormal experience. Yes. As an admitted mom, and before you know it, I became a milking cow. Like I had so milk in the freezers, they had to send some home.

    [00:31:11] Jenne Johns: They're like, you need an extra cooler. But then it came a period where that fast milk production slowed up and dried up. From the stress of having to return back to work. And this is why I always say NICU moms need a NICU mom buddy. Or they just need a buddy. They need someone who they know, who they trust.

    [00:31:28] Jenne Johns: It doesn't have to be their partner per se, or their husband, but someone who they trust with their emotions and their feelings. Cuz I'll never forget having a cousin. Shout out to my cousin, Rashida, hi Rashida, who came to visit me in the NICU during that stressful time. And we were in the pumping room, and I'm like I just nothing's coming out.

    [00:31:49] Jenne Johns: I don't know what to do. They're suggesting that I get on some pills. I've been trying this kale smoothie. Sometimes it works, sometimes it doesn't. But I need to be able to feed my son. And she just rubbed my arm and gave me the warmest hug and said, you'll do it. It's gonna be okay. And then the milk just flowed from there.

    [00:32:06] Jenne Johns: I became the cow again. I became, oh my goodness, to all of my breastfeeding moms out there, moms who are considering breastfeeding or to my NICU moms,

    [00:32:18] Dr. Jill Baker: if you just, yeah. I had to get a lactation consultant too. And she, yeah. Hi, Brooke Vero. She was the best. She was the best. Yep. Yep.

    [00:32:28] Jenne Johns: Although stressful, we turned that stressful situation into a positive.

    [00:32:32] Jenne Johns: And when my son came home with us, we had milk storage for about, I think he had three or four months worth of milk stored up when he came home. Oh my gosh.

    [00:32:44] Dr. Jill Baker: All you needed was to hear that one thing

    [00:32:48] Jenne Johns: her voice, her touch something worse. Yeah, it made me flow. So I think her poor to this day. Oh

    [00:32:53] Dr. Jill Baker: my gosh. So I love that idea of, or that need to just have some, you knows, we, I think we would call it social support, but to have someone who just gives you encouragement and who is there for you, especially in such a stressful situ.

    [00:33:16] Dr. Jill Baker: Okay, so wait.

    [00:33:17] Jenne Johns: I like to think of it as a mommy's helper. So you know how I like that a lot of women have doulas to assist and aid in getting to and through a healthy right and delivery I strongly and firmly believe in. We are advocating to get NICU admitted families, a mommy's or whether we call them a doula or not, but they need someone by their side who can help support them, encourage them, motivate them, because the journey, it gets rough and it's very unpredictable, minute to minute, day by day.

    [00:33:49] Jenne Johns: And just to have someone by your side who can be that non-judgmental, comforting, encouraging arm and ear in hand I believe would support these families in a very unique and needed way. With

    [00:34:02] Dr. Jill Baker: all of this that you were doing, advocating for your son in the nicu, being in the nicu, still working, And becoming a breastfeeding champion.

    [00:34:16] Jenne Johns: How did you The cow. You can call me a cow. I was a cow. A cow.

    [00:34:19] Dr. Jill Baker: You were a happy cow. How did you balance all of

    [00:34:23] Jenne Johns: those things? I don't mean to get too spiritual, but I am a woman of faith. God's grace. Yeah. I don't know how I did it. I don't know how I did it then. I can't wrap my mind around having to do it now.

    [00:34:37] Jenne Johns: But I did, and my son came out on the side of the spectrum. That's fairly unscathed, right? So something happened, right? With every, all the sacrifices, the schedule, adjustments the feeding, the advocating, it worked. But I don't know how I did it. Your. My faith. Yeah. If you're looking for something other than faith, I have nothing for you.

    [00:35:04] Jenne Johns: But God's grace was sufficient. Lots of prayers, lots of meditation, lots of journaling. Which is one of the things that I did a lot of when my son was discharged from the hospital for when we brought him home. The house was so quiet. It was so weird because the NICU is a very loud place, pre Covid.

    [00:35:26] Jenne Johns: Got it. Pre covid when everyone, and in not saying any, and everyone was allowed in the hospital, but in the NICU unit both parents could be there. Anytime the NICU was open and you could have guests come in. And at times all of us had guests, right? So you've got these babies whose machines are beeping constantly.

    [00:35:45] Jenne Johns: They breathe too light, the machines go off, they choke while they're feeding the machines go off their blood pressure, droppers, spike the machines, go off. The machines are always doing something. You've got nursing doctors interacting, talking about baby's charts. And unfortunately you have lost. So you hear parents wailing.

    [00:36:04] Jenne Johns: It's a circus in the zoo, right? It's a circus in the nicu. Excuse me, I called it the zoo. It's a circus in the NICU and it's loud. And when we brought our son home, it was so quiet, like you can hear a needle drop. And this was the most quiet I think I had heard since before he was born.

    [00:36:20] Jenne Johns: Oh my goodness. And other than his loud breathing, cuz he was a loud breather when he first came home. I used some of that quiet time to just process, start to process everything that we had just experienced. Good, bad, and indifferent. Yeah. And I journaled a lot. And in the process of journaling, I wrote and dedicated a few poems to my son, this beautiful miracle baby that I brought home.

    [00:36:46] Jenne Johns: And one of those poems at the time was called, you are so very special. But I just kept reading this poem to him over and his father said to me, Janee, you need to do something with that. It's powerful. It's more than a poem. Poem. And ironically enough, I always knew I wanted to be an author.

    [00:37:03] Jenne Johns: I always knew I wanted to write an author, a book. I like you, Jill, I lived in New York. I only survived New York for about 11 months, but I started working the train system in New York that

    [00:37:13] Dr. Jill Baker: never, if you're not from New York it's rough. It's rough,

    [00:37:16] Jenne Johns: it's a rough train's rough. But I did, I wrote, I started writing my first book on the train system going from work in Manhattan.

    [00:37:24] Jenne Johns: Oh. Going to Harlem. And when I moved home to Philly, I just kinda lost sight of that book. And then when when dad was like, you need to do something with this poem. I was like, that's it. This is the book. Because one of the other things that happened in the NICU was the nurses encouraged me to read to my son.

    [00:37:40] Jenne Johns: Oh, they said, Janae, you're here lot. I was usually the first mom to enter the NICU between six and seven in the morning, the last to leave between 10 and 11 or whenever they kick me out. Janae, you have to eat, you have to get some rest. We're, we'll take care of him. He's fine. I'm like, no, if he's so fine, why isn't he coming home with me?

    [00:37:54] Jenne Johns: And I was like, ok, so I'll act like I wanna go home and eat, but and sleep. But when we started to bring books to the nicu, because our family is just over the top, he had a whole library next to his bed. Oh my gosh. That came up to my, it probably came up to my hip from the floor to my hip of books.

    [00:38:13] Jenne Johns: And there were just certain books that he absolutely loved being read to him and others. He would look at me like, really? Mom, that book today? He was showing me he was giving me glimpses of his personality then. But When I read the books to my son, although I was thankful for each and every book that was donated to us, or gifted to us, or that we brought from my niece's library, none of these books, especially the baby lullabies, spoke uniquely to our situation.

    [00:38:38] Jenne Johns: We didn't full term baby. He, we weren't able to bring him home and tuck him into bed at night and turn the light out. We had to part ways with him in the hospital. And entrust his care to Yes. Who enjoy strangers. To hope that when we returned in the morning, he would be there for us. He

    [00:38:53] Dr. Jill Baker: would be fine.

    [00:38:53] Dr. Jill Baker: Yeah.

    [00:38:54] Jenne Johns: I took that poem. You are so very special. And Dad put a fresh name on it and put one foot in front of the other. And two years later, self-published Once Upon a creamy book. Oh my gosh. Which as you mentioned in my intro at the time, was the first lullaby for NICU admitted babies. Oh my God.

    [00:39:13] Jenne Johns: And

    [00:39:14] Dr. Jill Baker: Ok, so you're a trailblazer too.

    [00:39:17] Jenne Johns: We knew as a family we needed to give something back to that nicu cuz I was horrible. I was I felt horrible when I, when my son graduated and we were discharged and I was like, I'm sorry. I'm really not this person in real life. That was just the NICU me.

    [00:39:29] Jenne Johns: That's not the real me. So let me introduce you to the real me. What else can we, what else can be

    [00:39:36] Dr. Jill Baker: expected? I

    [00:39:37] Jenne Johns: gave those people a run for their money. I made them work hard for our presence and then nicu, but it was worth it in the long run. But

    [00:39:43] Dr. Jill Baker: I knew, but don't you do, but honestly, do you feel that.

    [00:39:48] Dr. Jill Baker: If you didn't do that, that the outcomes for your son may have been different.

    [00:39:55] Jenne Johns: I believe that wholeheartedly because

    [00:39:57] Dr. Jill Baker: I feel like at every step of th this process with birthing our, getting pregnant, birthing our kid, birthing our babies and ho and praying that everything happens, that we get them home safely and we get home safely, that we have to advocate for ourselves because that the extra care and attention just is not a

    [00:40:20] Jenne Johns: default for us.

    [00:40:22] Jenne Johns: It's not a default, and unfortunately I felt like if I didn't act the way that I did or communicate the way that I did, I will be ignored and look at what instances when we speak and we share a concern or we express something that we feel is not right, even though I don't discredit that these doctors and nurses have probably individually and collectively had more.

    [00:40:47] Jenne Johns: Experience delivering healthcare than the years I've lived. I don't take that away from them. However, this is still my son. And there is something, there were things inside of me that I couldn't clearly articulate, but I felt intuitively, something's not right with my son today. I need you to pay attention.

    [00:41:06] Jenne Johns: I need you to run some tests. I need you to sit down and let's look at some labs. Something's not right. And every time I had that gut feeling that something wasn't right with my son, something wasn't right and someone needed to pay more attention to him. And so I absolutely firm believe in, I believed that had I had been that quiet mom that sat around and went along and get along, yeah.

    [00:41:27] Jenne Johns: My son could have had a different, Or I showed up in the way in which I did and I got paid attention to because I made ano a lot of noise until I did get that attention and they happy to see me go, not so happy to see my son go. They were happy to see him go because he was healthy enough to go.

    [00:41:41] Jenne Johns: But it was like, get your mom off this nicu, let her go be the problem to your pediatrician now. But in all seriousness, that is a lot of what we do at once upon a premium nonprofit that we'll get to in a moment. But we encourage moms to speak up and speak loudly and speak often about the care that they're receiving because the data and the statistics are showing us that when we don't, we can have some of the most adverse and harmful

    [00:42:06] Dr. Jill Baker: outcomes.

    [00:42:07] Dr. Jill Baker: And another thing you were saying regarding, all the years of experience that, medical doctors have, and healthcare providers and nurses have. I think that also lends to, and I'm not speaking for medical doctors but I've had medical doctors say that sometimes it, it leads to a feeling of, yeah, this, it's gonna be all right.

    [00:42:32] Dr. Jill Baker: I've been through this hundreds and hundreds of times, and by the time they get to you, maybe you are like, your son is like the 1001 baby that they've worked with. Okay, but this is the first time for you. It's the first time for your family. And so there has to be some sort of reset, number one and number two, an understanding of any, cultural issues or communication that may not be I ideal for the family.

    [00:43:06] Dr. Jill Baker: And some changes could, can be made. Like what the. What that supervisor said to you in the beginning. I think that she was saying to you that she could tell that you are a person who you're going to be, you're not gonna be silent. You are going to communicate, you're gonna advocate for your son.

    [00:43:26] Dr. Jill Baker: And I think that she just probably wanted you to just go along with the plan. And there's probably other, there probably were other black women and before you that just went along with the plan. Absolutely. And that doesn't help

    [00:43:44] Jenne Johns: it. It doesn't help. It perpetuates status quo and a paternalistic delivering healthcare.

    [00:43:50] Jenne Johns: And I don't agree with it because I firmly believe that parents are part of the care team as well. And I was treated like an outsider instead of someone who was a member of my son's care team. Which is absolutely critical when you have a family who's going to be in that NICU every single day. For months, I wasn't a missing.

    [00:44:09] Jenne Johns: We weren't missing an action. Parents, we were by that baby's bedside every day, right? And so when clinical rounds came up, we got the results of the clinical round on the backend instead of us being incorporated to say. And what view do you have? What questions do you have? What things can we clarify?

    [00:44:24] Jenne Johns: How do you feel as his parent? Do you agree with what we're, no, it was none of that. And so maybe that was her purpose or her intention of our conversation. I wish she would've just said what she really wanted to say, instead of referring me to work with the only black person. But it's okay for two reasons.

    [00:44:43] Jenne Johns: One, my son was able to come home, two. That story has now made once upon a premium nonprofit, a lot of money because we packaged it and put it into our eLearning courses where we go back and train healthcare professionals the correct way, right to treat black birth. And that's right. Women families who are admitted in the NICU and to check their own personal bias.

    [00:45:05] Jenne Johns: They're implicit and explicit bias. So had it not been for that conversation and a few oth other ugly moments that I had in that nicu, a lot of what we're doing and once upon a premium as a nonprofit probably wouldn't exist. But I thank her because it's given an international opportunity to shed light on things that need to happen differently in the nicu.

    [00:45:26] Dr. Jill Baker: Yeah, cuz I think she probably just started this fire. And the, and this passion in you that led you to writing your book, starting, the organization once upon a Premium Incorporated. So can you just share with everyone, what are some of the main goals for Once Upon a Preemie Incorporated and kind of one of the biggest accomplishments thus far for you all?

    [00:45:56] Jenne Johns: Wow. Oh my goodness. The most simplistic way that I can describe our goals and our vision for this organization is really just to transform the way that healthcare is delivered to black birthing women and black preemie families. We know what we. And our experiences and our voices hold weight and value if they're just listened to.

    [00:46:20] Jenne Johns: And so we create and curate opportunities for healthcare professionals to almost have to listen to our voices our experiences, our advocacy points, our needs for the purposes of them going back to their respective institutions and doing better. Yes. This isn't rocket science. There's always room for improvement.

    [00:46:39] Jenne Johns: There's always room for improvement, this's your quality improvement goal for the year, guys exactly. Oh man. One of our biggest accomplishments.

    [00:46:48] Dr. Jill Baker: Okay. It doesn't have to be one as many as you wanna tell me.

    [00:46:52] Jenne Johns: I love it. I love it when we're able to donate our books to families who are bedside with their babies and it brings them to tears, and they just feel like they have someone who understands and they feel like they have this virtual advocate in us, or they just found the right words that they couldn't articulate that they could then give to their babies to feel like.

    [00:47:12] Jenne Johns: We're here for you. We're comforting you. So that's always a biggie for us. I love love when parents share with us how the book moved them and helped encourage them. I love it when we have healthcare professionals and this is a really big win for us. Who go through our e-learning courses. So we set up virtual learning courses for healthcare professionals that are accredited.

    [00:47:32] Jenne Johns: We beat 'em up pretty bad, but then, we give them the tools that they need. We give them the tools that they need to go back to delivering care better and different for black women and babies. But I love it when they go through the courses and they have these light bulb moments and they say, these are things that I can actually change and I'm going to change because I have to.

    [00:47:49] Jenne Johns: Because I'm a human at my core and I never want anyone to leave my care feeling less than or feeling disrespected or not heard. And we had a system in Texas, we had a NICU in Texas that made all 125 of their healthcare professionals, doctors, nurses, social workers, lactation consultants, the registration clerk go through our e-learning courses.

    [00:48:08] Jenne Johns: Wow. And they completely eliminated a disparity between black and white moms and black and Hispanic moms. They had a four year issue. So for four years. Yeah. Hundred 25 staff couldn't figure out how to help. Black birthing moms who were admitted to the nicu, start to breastfeed and to continue to breastfeed once they were discharged from the nicu.

    [00:48:28] Jenne Johns: Our courses are one hour in length. We have four one hour courses. Wow. Two months after completing our four courses that disparity was completely eliminated. Oh my goodness. So for four years they couldn't figure an hour in four hours. So four hours of just paying attention to black moms like you and I, sharing their journey, sharing their experiences, sharing their recommendations on how to improve paired off with healthcare professionals who are doing the transformation work.

    [00:48:57] Jenne Johns: Faculty are twofold. So listening to eight people total, four healthcare professionals and four parents across four hours helped them to completely eliminate a disparity. And that was in, that was within one year of us standing up our e-learning courses. So that was a really

    [00:49:13] Dr. Jill Baker: big organization and sometimes they think, oh, it's gonna be too much.

    [00:49:16] Dr. Jill Baker: It's gonna take too much time. That's not

    [00:49:19] Jenne Johns: the case. Another big win for us last year November 17th, which is premium awareness Day. So please go purple with us every November 17th. We hosted our first in-person conference here in Philadelphia, and we had standing room only. We had people waiting outside in the lobby who knew the conference was sold out, who were like, we're just here to see if we can get a seat if someone doesn't show up.

    [00:49:41] Jenne Johns: And to know that little lone me from a little girl from West Philly who had her early birthright, had a belly birth who didn't like the care that she received and then took action around that could bring 116 healthcare professionals from across the country together to talk about these issues and right to set them on the path to go back and change the way that they communicate, change the way that they set up their quality improvement programs, change the way that they delivered black centered care for black moms and babies.

    [00:50:10] Jenne Johns: Just, it overwhelmed me, but that was a really big organizational win. Oh my goodness.

    [00:50:18] Dr. Jill Baker: You are kicking butt.

    [00:50:20] Jenne Johns: You're doing it. Thank you. We're just doing the work that we know needs to be done and can be done. And it's not gonna take a move of us having another wave of covid for us to get it done.

    [00:50:31] Jenne Johns: We gotta get more than half the world vaccinated. To bring Covid rates down. I firmly believe we can figure out how to treat women and keep moms and babies alive and prevent a NICU admission if we really wanted to.

    [00:50:46] Dr. Jill Baker: So for women who are listening who may be pregnant or early in their pregnancy, sisters, what are a few things, maybe a few tips or guidance that you can give them for things that they can do or things they can try to do that would be protective in.

    [00:51:09] Dr. Jill Baker: And maybe things for them to think about that could maybe pre prevent a preterm birth and then just what you know, and then what to do if they're in that situation.

    [00:51:25] Jenne Johns: To my birthing mamas, or soon to be expecting moms, listen to your body. I encourage women to listen to their bodies and when they feel that something isn't right, you have to speak up.

    [00:51:41] Jenne Johns: And if who you're speaking up to is landing on deaf ears, as much as people don't like switching providers, in our case, it could be a matter of life and death for your baby. So if you feel like that relationship or that respect and that critical listening ear is not on, you're expressing a concern with who you're receiving care from, it may be time for you to move on.

    [00:52:04] Jenne Johns: The second thing I share with Mamas is soon to be Mamas, is that doulas work. They have worked for us culturally before Western Medicine was a part of our orientation to delivering babies. And right now, doulas are doing what the healthcare system can't or refuses to do. So a lot of health insurance companies are investing in connecting moms with doulas so that the financial costs can be completely eliminated or significantly.

    [00:52:35] Jenne Johns: If you haven't done so already, please reach out to your provider and to your health insurance provider to engage a doula and or if you, of course, can afford to hire a doula on your own, please do. If I ever find myself in that place again, which I seriously doubt at this point, but if I find myself at that place of going through another pregnancy journey, I'm not doing it without a doula.

    [00:52:56] Jenne Johns: If you know that you are going to be that high risk mom who has already been told that you're going to land in the nicu, I would start to reach out to the NICU to build some type of rapport and communication, or at least know who your baby is going to be in the care.

    [00:53:12] Dr. Jill Baker: I would love that advice. Yes.

    [00:53:14] Jenne Johns: Yes. And just start to educate yourself on what it means to have a baby in the nicu. Being in the NICU means that you have to learn a whole new language. We shouldn't have to, but we do. It's a whole new language. It's a completely different

    [00:53:28] Dr. Jill Baker: word. This just an extension of all the language we have to learn when we're pregnant.

    [00:53:33] Dr. Jill Baker: Exactly, yes. It's just another extension. Exactly. But

    [00:53:35] Jenne Johns: They only speak nicu, speak in the nicu. They don't speak. We're in there just trying to be mom and dad. There are amazing organizations out there like Globe preemies Alliance for Black NICU Families and a few others who have taken the steps to create some really easy to follow guides for families who know that they're going to land in the NICU to at least have that introduction.

    [00:53:57] Jenne Johns: There's a website on Draeger's Drager it's, their website is called Babies First. I have a couple articles on there, just introducing families and parents to what it means to be in the NICU and how to humanize it for you and for your baby. So I encourage people to check out those resources if they needed.

    [00:54:15] Jenne Johns: And by all means, please sign up for our newsletters at once Upon a preemie. We share tidbits every now and then for parents, and specifically for healthcare professionals, and hang out with us, so on social media because we'd love to hear from you and we'd love to bring you into our Once Upon a Premium family.

    [00:54:33] Dr. Jill Baker: I love that. I love that. Gave them all these good resources for where they can start. I think this is going to just change, hopefully some many potential pregnancies right now for any, mothers who are listening and, I just, this is such a real, just such a real thing. Cause every pregnancy I've had, I've worried about having to be in the NICU and.

    [00:55:03] Dr. Jill Baker: And you're sharing and telling the world why it's something we need to worry about and why it's something that we really need to put as much attention to, particularly when the babies are still, as you said, are still inside of us. So even with everything and all the disparities and inequities that are still present right now, do you have any hope or is there anything hopeful that you wanna share with the audience about prenatal and neonatal disparities for black women and women of color?

    [00:55:41] Jenne Johns: Absolutely. We are the solution guys. Our lived experiences and our stories and our journeys don't and should not fall on deaf ears. If you've had a journey or someone in your community or your family has had an experience or a journey that. Needs to be shared. Please know that there are many organizations like mine out there in every state that would welcome engaging you to speak about your experiences and not only speak about your experiences or those of your loved ones, but to also start to advocate for what we know we need to see happen in our country at the local, at the state, and at the federal and congressional levels.

    [00:56:24] Jenne Johns: Although we hear more of the negative on the news than we do the positive, there are glimmers of hope in each and every state around the black maternal health and neonatal crisis. I believe the further we get Life past Covid. The more, hopefully we'll start to see the narrative around the blur the black maternal health crisis shift a bit from gloom and doom to birthing joy, which is the place that we start from.

    [00:56:49] Jenne Johns: That's our orientation to delivering and Right. Yes. Culturally, right? Yes. And ancestrally, it's been joy. It's been the the best time in a woman's life. Yeah. We are advocating on the ground to see as many changes as we can make possible, but we can't do it alone, and we can't do it off of a penny and a prayer.

    [00:57:09] Jenne Johns: So the more voices that we have at the table when we're going to advocate for funding and program changes in getting doulas and in getting resources into the hands of birthing women into NICU admitted families the more we'll be paid attention to and the more we'll be supported so that we can support our community and again, I love the question that you asked.

    [00:57:30] Jenne Johns: If you know someone who's pregnant or if you are pregnant, please just be a resource. Please. Just be a resource to love on a mom or a soon to be mom so that she doesn't feel alone on her journey. And if you see she's not herself or she's not okay please be that resource to help her get the help that she needs, if you can.

    [00:57:49] Dr. Jill Baker: I love that. I love that. Cause we need love the whole way, the whole time that we're pregnant. We need as much love as possible. I love and light Jenae, thank you so much. Thank you so much for being on the show. But this will be only the first time. So my hope is that you'll be, a regular guest on the show.

    [00:58:13] Dr. Jill Baker: As much as you can, with your time. I definitely want us to do something special together for world Prematurity Day in November. Anything that I can do with you all, but I definitely want to have a special show again, just to increase the awareness of this issue in our community and the work that that you do and your organization does.

    [00:58:42] Dr. Jill Baker: So thank you all for tuning in today. Thank you again, Janae Johns for joining us today and sharing all of your knowledge. Jene, can you let the listeners know how they can find you or connect with you? On social media.

    [00:58:59] Jenne Johns: Thank you so much for having me, and thank you for creating space for us to have this conversation.

    [00:59:04] Jenne Johns: This is a very important conversation and we're already prompting our continued partnership in November. I'm excited. Yes. Stop already. I'm excited already. But we please please connect with us. We're on LinkedIn. Our LinkedIn handle is once upon a premium academy. We're also on Instagram at once preemie, and we're also on Facebook at once.

    [00:59:26] Jenne Johns: Upon a pre, I wish we could have secured all once upon a premium across all three platforms. Once it's so hard,

    [00:59:33] Dr. Jill Baker: it's hard

    [00:59:33] Jenne Johns: to get all of them. Instagram is once a preemie Facebook once upon a preemie, and LinkedIn is once upon a Preme Academy, and you can always connect with us on our website at www.onceuponapreemie.org.

    [00:59:49] Dr. Jill Baker: Thank you sister so much. Thank you Jana.

    [00:59:54] Jenne Johns: 3,

    [00:59:55] Dr. Jill Baker: 2, 1. Yeah. Thank you for listening to this episode of Maternal Health 9 1 1. Please follow the show on Instagram, Facebook, and Twitter. Feel free to DM me with your questions and thoughts or to share your infertility, fertility, and maternal health story. For more information on this podcast and your host, visit ww dot dr joe baker.com listening to the show on Apple Podcast.

    [01:00:21] Dr. Jill Baker: Please rate and review it. It really helps the show and the feedback is welcome.

    [01:00:37] Jenne Johns: Here you go.

    [00:00:00] Jenne Johns: Hello, maternal health 9 1 1. What's your emergency?

    [00:00:08] Jenne Johns: 1,

    [00:00:09] Dr. Jill Baker: 2, 3, 4.

    [00:00:14] Dr. Jill Baker: Hi, I'm Dr. Joe Baker. I'm a wife, a mother, a community health scholar and executive director and a fertility coach. More than 12 years ago, I was on my own infertility journey. Since then, I've made it my personal mission to help anyone who is on their own journey to become a parent, as well as shed light on infertility and maternal health experiences of bipo women and couples.

    [00:00:42] Dr. Jill Baker: Now let's begin this week's episode of Maternal Health 9 1 1.

    [00:00:54] Dr. Jill Baker: Hello listeners and welcome to this very special episode of Maternal Health 9 1 1. I am thrilled to have with you today a very special friend and colleague who I had the pleasure to meet virtually last year. We were talking a little bit about that experience before we started recording.

    [00:01:18] Dr. Jill Baker: Both of us were selected to be a part of this very important health equity panel discussion last year by the Philadelphia College of Osteopathic Medicine in which we were talking about birth disparities, prenatal disparities, maternal health disparities among black women. And.

    [00:01:43] Dr. Jill Baker: One, we had a lot of people that were on the actual panel, which is not common. You usually have, maybe 10, 20 people. I think there were over a hundred people on the actual panel. And then we had, it was posted on their, the school's website and sent out, and so their students can reference it for further education.

    [00:02:06] Dr. Jill Baker: It was a big thing and I think what was great about that experience was, I know for me that sometimes in this work you sometimes may feel alone or you might feel like, am I making a big deal about these inequities that continue to happen for black women? And I know that event for me, Really helped me confirm that no, this is important, this work is important.

    [00:02:39] Dr. Jill Baker: There are people nationally who are working on these issues in their own ways. It was also very interdisciplinary. There were a lot of public health folks like myself and my guest today. There were medical doctors, there were professors. So it was just so collaborative. And the truth is that in order for us to make real changes in these inequities and inequalities, it's going to have to be a multidisciplinary approach.

    [00:03:12] Dr. Jill Baker: And I think that for me, again, it was one of those moments just affirming for me, you're on the right path. You are being brought into the presence of other people and powerful and amazing black women at that who all of us are on in this work and have had our own experiences as well that have brought us to this work.

    [00:03:37] Dr. Jill Baker: And so today we're going to specifically talk about perinatal and neonatal birth inequities and the experiences of families who have preemie babies. And so just some information for those of you who may not know how much of an issue this particular disparity is in our country. And these are new stats from March and Dimes.

    [00:04:04] Dr. Jill Baker: So you all are all aware in our country one in 10 babies is born preterm in the United States. However, the rate of preterm birth for black infants is the highest currently at 14%. And so this is something that really should make. A little angry because it shouldn't be that, it shouldn't be that way, this way.

    [00:04:30] Dr. Jill Baker: And there are a number of factors that are, responsible for these disparities in preterm birth. And we're gonna talk about those today on this show. As well as my sister friends, journey, personal journey into this particular work. And so today I have the brilliant, the amazing and the dope Janee Johns, who is gonna shed light on this topic for us.

    [00:04:58] Dr. Jill Baker: And what we all can do to change it, because we all have to be part of this work. And so you all know Janae Johns is a Philadelphia native. And so for those of you who may not know Philly is my second home. She has her master's in public health. We have so much stuff in common. I have my doctoral degree in public health.

    [00:05:21] Dr. Jill Baker: She went to Temple for her MPH program. I did go to Drexel. Still they're very close. Proximity and Temple and Drexel mph. H students, I think are always together especially in Philly. She is a national health equity thought leader, an author and advocate for reducing healthcare disparities while advocating for the needs of her own son.

    [00:05:46] Dr. Jill Baker: Janae wrote once upon a preemie. The first of its kind children's book written for parents of preemies while in the nicu, a graduate of the Disparities leadership program at Harvard University Medical School. Janae has over a decade of experience advocating for policy and community changes to improve health equity and health outcomes for low income communities.

    [00:06:14] Dr. Jill Baker: She also led quality improvement in health equity transformation strategies with the nation's largest health insurance companies. Janae is currently president of Once Upon a Preemie when their goals and their strategies also are for helping to pioneer solutions for neonatal equity to center black preemie family experiences.

    [00:06:42] Dr. Jill Baker: And lastly, with all the things that she does, She is also Health Equity column editor for Neonatal Today, so Maternal health 9 1 1 Family. Please welcome Ms. Janae John to the show.

    [00:06:59] Jenne Johns: Hi Janae. Hi, Jill. Thank you. Thank you. Thank you for that. Very warm welcome. An introduction to maternal Health 9 1 1.

    [00:07:08] Jenne Johns: I'm excited to be here.

    [00:07:10] Dr. Jill Baker: I'm excited to have you. And like I, I said I'm so thankful that we were on that same panel together that just brought together so many Amma amazing women from all over this country who are, working on maternal health disparities, in their own.

    [00:07:33] Jenne Johns: Absolutely. I absolutely love what you, how you started to frame that black Maternal Health Week panel with the Philadelphia College of Osteopathic Medicine.

    [00:07:43] Jenne Johns: Thank you for sharing that. You felt like you were in a safe space and you were affirmed in the work that you're doing and that you didn't feel alone. Because sometimes as healthcare professionals and black healthcare professionals, and especially in this maternal and child health space, it does get a bit isolating at times.

    [00:08:00] Jenne Johns: Yes. To be on a panel with other like minds who were leading powerful and transformational work, and then to be met by students who were eager and oh my gosh, weren't they to change the world. It was like, we are doing this. We are in the right place at the right time. In the right school. The students

    [00:08:16] Dr. Jill Baker: Made it even better.

    [00:08:18] Dr. Jill Baker: They

    [00:08:18] Jenne Johns: did. They're

    [00:08:19] Dr. Jill Baker: because they really understood.

    [00:08:22] Jenne Johns: They understood and they are the next wave of change agents. So I'm just honored to have been in their presence and to have met you on that panel. And then me too.

    [00:08:33] Dr. Jill Baker: And here we're, and I remember reaching out to you, I was like gimme your, make sure I have your, I was type I think typing to you in the Zoom chat.

    [00:08:41] Dr. Jill Baker: I was like, make sure I need your email

    [00:08:43] Jenne Johns: address. Yes. And we've been connected via LinkedIn ever since.

    [00:08:47] Dr. Jill Baker: I still need, we still need to see each other in person since we're so close. So we have to make each other, we have to make that happen. Yes.

    [00:08:54] Jenne Johns: We have to get off of Zoom and LinkedIn.

    [00:08:56] Dr. Jill Baker: Yes. I know.

    [00:08:57] Dr. Jill Baker: I think it's just the process of post pandemic and still, a little bit of covid, but it's making those transitions of Okay. It's okay to see people in person again. It's, is

    [00:09:09] Jenne Johns: it okay to give hugs yet? I've.

    [00:09:19] Dr. Jill Baker: Oh my gosh, it's so funny. And then yeah, and then we have so much in common with our public health backgrounds and going to school in Philly Philly, having, ah, Philly has probably so many numerous MPH programs. But Temple, I went to temple for my ma for my master's in counseling psychology.

    [00:09:41] Dr. Jill Baker: So I was at the School of Education while I was there. Okay. But I loved Temple, I loved my experience, I loved it. I loved it.

    [00:09:50] Jenne Johns: Wonderful. You loved being a temple owl. I did.

    [00:09:53] Dr. Jill Baker: I did. Yeah, I did. I did. So before we go into, I really want you to walk us through, for the first part of the episode of our discussion, your personal journey in this work with your son.

    [00:10:11] Dr. Jill Baker: The first question that I want to ask you that I ask every guest is, why is maternal health an emergency in this country?

    [00:10:25] Jenne Johns: That is such a loaded question. You started the interview off with our most current preterm birth statistics. We are one of the wealthiest nations across the globe, and we can't figure out how to keep black moms and babies alive pre and post delivery.

    [00:10:44] Jenne Johns: And it just feels so alarming and disheartening that we also can't keep babies cooking full term. Yes, and to add insult to injury, when you continue to read the statistics and the peer review journal articles and data reports, unfortunately black moms and babies continue to top those charts. And it's not that the country can't afford to figure out how to keep us alive and keep our babies cooking full term.

    [00:11:13] Jenne Johns: We are in crisis mode because the women who, the women and families who have experienced these inequities during their birthing journey aren't being listened to, not being respected and not being taken serious when we report a concern or a plate during pregnancy, during delivery, or even in the nicu, which was our family's journey and experience.

    [00:11:35] Jenne Johns: And so the crisis we're in is unfortunately one that is 1000% preventable and avoidable if we're listened to, and if the right resources are put in place to help prevent these alarming statistics to continue to grow and climb.

    [00:11:54] Dr. Jill Baker: And as you said it's at every kind of spectrum of the whole experience with.

    [00:12:03] Dr. Jill Baker: Having a child if you know you're carrying your child biologically or that's your desire, and even if you have issues with getting pregnant, then once you get pregnant, then there's the transition in worrying about, and you said it right on the eloquently, that worried about, and I know I was worried and both in my pregnancies and both of them were high risk.

    [00:12:30] Dr. Jill Baker: And my first being my twin pregnancy, that how long the baby, my baby, how long were they going to stay? Because you know that the longer they stay, the better outcomes that they will have upon delivery. But knowing all the odds that are against black women, educated black women, us having the worst.

    [00:12:57] Dr. Jill Baker: Birth outcome disparities, which is another troubling part of this whole puzzle. So I know that was, always a con, a real concern of mine. So for you, when you were pregnant with your son, what, like what was going on, with you, with your pregnancy? How did you know, did it start, how were you feeling?

    [00:13:22] Dr. Jill Baker: You. So

    [00:13:24] Jenne Johns: I'm always honest when I answer this question cause I was in my early thirties living my best life. When I say best life, I was living my best life. I love what he was expecting. And so he was a welcomed addition to that best life because a degrees, I traveled the world. I was a new homeowner. I had the title at the corporate job, I had the income to follow.

    [00:13:47] Jenne Johns: And it was just like, wow. He was icing on the cake when I learned that he, when I learned that I was expecting. On the same token, unfortunately society was just at the beginning of coming to terms with the loss of Trayvon Martin. Oh. And yes, all of the mental and emotional and physical kinda elements of just thinking to myself, my goodness, I'm carrying a black child in America who could be.

    [00:14:18] Jenne Johns: Labeled this correctly at some point in his journey and taken away from me just because of co just because of the color of his skin. Yes.

    [00:14:26] Dr. Jill Baker: Yeah. Trayvon, I'm glad you brought up Trayvon cuz that Trayvon

    [00:14:31] Jenne Johns: before Floyd, before 2020 there was trade before Trayvon, there were so many others, but this was the first time, it was like, not the first time, but in our generation that it was televised and on social media and then the verdict and the outcome, it was ugly and it was scary and it was traumatizing.

    [00:14:49] Jenne Johns: And on the same token I wanna say I had a geriatric pregnancy cuz I wasn't here. How old were you? I was in my early thirties. I was in my early thirties. So it's not that Jerry, but it was like the beginning of Jerry. They tell

    [00:15:01] Dr. Jill Baker: you that your typical geriatric doctors say ob, g y n say, Have a geriatric pregnancy when you're 35 and over.

    [00:15:11] Dr. Jill Baker: All right. So I wasn't 35, so then it wasn't a

    [00:15:14] Jenne Johns: geriatric, all so I said before I was like, pre Jerry, I was pre Jerry, I was on the road to Jerry, but you, I wasn't in my teen, in my, I wasn't in my twenties. Which is fine. Because I also wanted to wait to have a child until I could, same. Provide and be a little to my child. But on the same token healthcare side, I was working in a high. A highly stressful environment. I was the first and only director of health disparities for one of the nation's largest Medicaid managed care insurance companies. And although it was a necessary role, I was treated like the unwanted stepchild.

    [00:15:54] Jenne Johns: And so I faced a lot of challenges in my career that I believe I carried with me biologically and during my pregnancy.

    [00:16:03] Dr. Jill Baker: And that is called, actually called weathering.

    [00:16:06] Jenne Johns: That's the point I was about to raise next. Jill. For so many African American women in this country, we are weathering life storms before we even get pregnant, that show up in our wombs and contribute to some of these alarming disparities.

    [00:16:22] Jenne Johns: And Beyond what happens at the point of receiving good or bad healthcare. We need to address how black women are treated, how they're paid, the levels of racism and microaggressions that they face on a daily basis before they even learn yes, or get pregnant so that they can get to a healthier, get to and through a healthier pregnancy.

    [00:16:43] Jenne Johns: So at the time of my son's birth, I did deliver early and I just learned a very beautiful term that I'm going to adopt and use from now on from my colleague, Dr. Kenika Harris at the Black Women's Health Imperative. I had a belly birth. I had never heard that term before, but I'm going, I haven't either.

    [00:17:01] Jenne Johns: What does that mean? I had a c-section. But having a c-section has such a negative connotation retraumatizes you every time you have to say and then relive that experience. But my son, didn't come vaginally. He came through my belly. Thank you. That means

    [00:17:18] Dr. Jill Baker: I had

    [00:17:19] Jenne Johns: two belly births. Yeah.

    [00:17:21] Jenne Johns: Love belly birth. We had belly births. And my son decided to introduce himself to his father and myself and our family 14 weeks early. He had a point. Okay. Okay. He's on mission and he still is. Okay. Okay. Clear about that. He's on a mission very fast at everything that he does. It was actually what's called a footling breach.

    [00:17:41] Jenne Johns: My son turned himself around in utero, kicked his foot through my cervix and the hospital, and the doctors gave him exactly eight hours to decide for himself. Was he gonna come on his ear on his own? Excuse me. Or did they need to go on for an emergency belly birth? Okay. And so we had an emergency belly birth and he was the tiniest little thing.

    [00:18:06] Jenne Johns: But I knew he was special. From the moment I laid my eyes on him, my son weighed one pound, 15.3 ounces, so he was barely there. He was so barely there. He was almost transparent. Wow. And we had a long, we had a very long and difficult almost three month journey through the neonatal intensive care unit until he was discharged to go home and during our NICU journey, unfortunate for the hospital system that we were in, a lot of the work that I was leading in my nine to five around health disparities and delivering culturally competent care and appropriate care and.

    [00:18:46] Jenne Johns: Finding ways to, communicate with patients respectfully and increase patient satisfaction and patient communication. When I say none of that was reflected in the care that we received. None of it. And it pissed me off to my core every day that I had to walk through the doors of that nicu.

    [00:19:04] Dr. Jill Baker: Lemme ask you, so lemme ask you this Yep. For, three months. That's a long time. Yeah. That was our, so when did you

    [00:19:13] Jenne Johns: first home,

    [00:19:13] Dr. Jill Baker: there's typically in these experiences, at hospitals, there's typically maybe one thing that happens or doesn't happen. The second thing, first time you're like, eh, maybe it's not, maybe it's not racism, maybe it's not discrimination, but then something else happens and then oftentimes your gut is telling you that something is off here with how.

    [00:19:42] Dr. Jill Baker: You maybe getting treated. So what's, were these things happening for you and your hu and your husband while you all were in this NICU experience?

    [00:19:54] Jenne Johns: Absolutely. The lack of respectful communication, the microaggressions, the difference in the way the African American families were treated and communicated with versus the white families was just glaring.

    [00:20:07] Jenne Johns: It was so painfully obvious and I couldn't sit quietly around it. And I share this story when I walk about the country to share our NICU journey and experience. But I never, I'll never forget the first time that my son was strong enough to come out of his isolette or the bed that he had to live in with all sorts of equipment attached to him to help him breathe and to live right.

    [00:20:28] Jenne Johns: First time he was strong enough to come out of the isolette so we could do what's called kangaroo care, which is skin to skin care. We put on a button, big button down shirt, and they're already, just in a diaper and they get to come out of their bed and come cuddle with mom or come cuddle with that for a few minutes until they're strong enough to do it longer.

    [00:20:47] Jenne Johns: Oh, and he was almost two weeks old before we could do this skin. The skin care

    [00:20:54] Dr. Jill Baker: is Sister a typical time period for it to take about

    [00:20:59] Jenne Johns: two weeks. It depends on the birth and the science and the strength of the baby. Okay. So my sister was with me at that time. Dad was at work. She was, my caretaker.

    [00:21:11] Jenne Johns: She was with us for the day and the director of the nurses, the NICU nurses came by our bedside and said, Janae, what do you do for a living? And I'm confused. I'm already confused by this question. Cause again, this is one of the most vulnerable and intimate antenna mommy moments that I've had with my children, right?

    [00:21:32] Jenne Johns: This is probably the one of the first things that I get to do to normalize this very abnormal experience. And the first question she asked me is not, how are you doing? Are you excited to hold your baby today? How is he doing? Who's this person with you by your bedside, Janae, what do you do for a living?

    [00:21:48] Jenne Johns: And I'm like, why? And she said, are you a, she starts as supervisor. Are you a supervisor at work? I said, no. She said, are you a manager at work? I said, no, I'm a director. Why? And she goes I see women like you don't do well in our nicu. I encourage you to build a relationship with our respiratory therapist.

    [00:22:11] Jenne Johns: And she told me her name. She's also an educated and employed African American woman in this nicu. Mind you, she was the only African American woman in that NICU who was on clinical rotation every two weeks. So it wasn't like she was there, the only one, the only every two weeks. Every two weeks. And this was my child's respiratory therapist.

    [00:22:30] Jenne Johns: And unfortunately I couldn't build that type of relationship with her because I didn't see her enough. One. And there were two respiratory therapists, and so they swapped. So it was her, sometimes it was another Caucasian respiratory therapist the other times, but the woman was preoccupied her own because she had a mother who was BA battling breast cancer.

    [00:22:49] Jenne Johns: Oh. And I felt like I would be a burden to her to single her out and build only a relationship with the one black face in the nicu because the other white Mickey nurses didn't feel like dealing with me and my attitude and I admit I was the wicked witch of the west and the east every time I walked through the door of that nicu.

    [00:23:04] Jenne Johns: But it was traumatic, it was isolating, it was confusing, it was scary. I just needed to make sure that my son was getting the care that he needed so that he would one day be strong enough to come home with me. And I didn't always get that assurance from the staff that we were, that were assigned.

    [00:23:20] Dr. Jill Baker: But there's still so many things wrong with that

    [00:23:22] Jenne Johns: question.

    [00:23:23] Jenne Johns: There's so many things wrong with every level of what that woman said to me. And again, be careful how you talk to and how you treat black women, because you never know when your story or the way that you treat them is gonna show back up again. All right, so I'm gonna preface the conversation by saying that conversation was part of what sparked everything that we are now doing once upon a premium as a nonprofit organization.

    [00:23:45] Dr. Jill Baker: So that interaction right there was like the beginning of kind of your awareness that there's something that's needed here in these experiences with black and brown mothers who are in the ni. That was one of

    [00:24:06] Jenne Johns: them. One of them, yeah. That wasn't the first. The first is when I walked through the doors of the NICU and there were no black staff.

    [00:24:12] Jenne Johns: None. There's the person who's doing equity and cultural competency work. Wait a minute, for my day job, encouraging diversification of the healthcare workforce. None. There were none. There were no black faces. There were a few other cultures and races, but no black. That's a huge, the population was more than 50% black.

    [00:24:35] Jenne Johns: The population was about 50, 70% black. We

    [00:24:38] Dr. Jill Baker: know the numbers. Wow. Wow.

    [00:24:41] Jenne Johns: When, and I say that to say, when I sat in that nicu, I wore two hat. As much as I tried to take my professional hat off, I couldn't because it was like, what am I showing? Stressing myself out at work for if the work that we're funding advocating for leading, prioritizing with hospitals and providers is not reflected in the care that my family is receiving.

    [00:25:04] Jenne Johns: I'm trying to save the world here and what's happening with my own family's journey, and I'm one of many, I'm one of many. You talk to one black NICU mom, I feel like you talk to us all. And unfortunately, a lot of black NICU admitted moms don't realize that they were treated unfairly until months or even years after they're discharged from the nicu.

    [00:25:30] Jenne Johns: Yes. And they talk to a mom like me that's wait a minute, I was treated the same way, but I didn't know, or I was communicated the same way. And it's yeah, no, none of that was right darling. None of it. So join our team as faculty so you can talk about it. And take action around

    [00:25:44] Dr. Jill Baker: it. But when you think just about the pure amount of stress, I can only.

    [00:25:50] Dr. Jill Baker: Imagine

    [00:25:52] Jenne Johns: it's when you have a NICU admission. Here's the thing, if you're employed and your company gives you maternity or paternity leave Yes. It's based on a full-term delivery.

    [00:26:03] Dr. Jill Baker: Correct?

    [00:26:04] Jenne Johns: You're right. Absolutely right. I don't even remember what it is at this point. Is it six weeks, six or eight weeks paid leave

    [00:26:10] Dr. Jill Baker: if you, six weeks typically if you have a vaginal delivery, eight weeks, if you have a ceased section.

    [00:26:17] Dr. Jill Baker: So that's based on my last pregnancy six years ago,

    [00:26:21] Jenne Johns: so I don't remember how much time that I, it's not enough as we know. I knew it was not enough, number one, and I knew that I needed to do some quick math and calculate the most important times that I would need to use that F M L A or use that paid leave.

    [00:26:35] Jenne Johns: Because even when my. Was healthy enough to be discharged from the nicu. He was not strong enough or healthy enough for me to entrust him to go to daycare. So I had to figure out how I could maintain my job, maintain our health benefits, and keep my son home at least for the first year of his life, so that I didn't put him at risk for returning to the emergency room or an intensive care unit for being around too many germs.

    [00:27:01] Jenne Johns: Cause when he was first home, he just couldn't handle those germs. Most NICU admitted babies can't handle the germ factor. So what happened? And this was a bit stressful. This was actually a highlight. One of the beauties and blessings of being in that leadership role was that. Able to do two things.

    [00:27:21] Jenne Johns: One, I was able to negotiate my presence in the office. So I went virtual many moons before

    [00:27:28] Dr. Jill Baker: covid. You went virtual before anyone else did? The whole world did.

    [00:27:33] Jenne Johns: Yeah. I was blessed to have a manager who was a nurse in her former life. And so she understood on some levels the need for me to be more present with my son Yes.

    [00:27:44] Jenne Johns: Than to be in the office. And so I was able to change my schedule so that I did a couple of things. One I took myself back to work midway through my son's NICU journey. But I only needed to work in the office half days. And then I worked virtually, which meant I worked in the nicu the other half of the days.

    [00:28:04] Jenne Johns: Oh my goodness. And then when he was discharged, I took. I think I only used two or three weeks of my paid leave, saved a few weeks for his discharge, and then used a heap of my PTL and things like that. So I could stay home with him as long as I possibly could. But even when I returned back to the office, I was just afraid that I would bring some germs from the office back home.

    [00:28:25] Jenne Johns: Yeah. And that's when I was able to do a a hybrid schedule. So two days in the office, three days out of the office so that I could care for him and keep my germ factor low. Oh my

    [00:28:34] Dr. Jill Baker: goodness. So you were supported and you were protected in

    [00:28:42] Jenne Johns: this th that was one blessing. Yeah, that was one blessing that I would not have paid someone to think could have happened during that

    [00:28:50] Dr. Jill Baker: two time.

    [00:28:51] Jenne Johns: And the other stressful part was milk production, which we don't talk about a lot in the black community. We talking a lot more about it now, but,

    [00:29:00] Dr. Jill Baker: I'm glad you brought that up to, to talk about breast

    [00:29:03] Jenne Johns: breastfeeding. Breastfeeding was like a taboo thing for me. Remember I was living my best life. Yes. You.

    [00:29:08] Jenne Johns: And when my son came, even though he came early, I had no, in even being a public health professional, I had no intentional being a breastfeeding mother Okay. Was my goal. It was, I advocated for it. I signed, I, our organization will support breastfeeding. That's good for those breast breastfeeding.

    [00:29:25] Dr. Jill Baker: I have no judgment about breastfeeding because first pregnancy, I pregnancy, I couldn't, cause I didn't get milk for my twins. I was able to breastfeed my youngest amari. So I know both experiences and knowing breastfeeding is

    [00:29:40] Jenne Johns: hard. It is hard and then it's hard. It's hard. Think about trying to express milk for a baby who can't latch on.

    [00:29:48] Jenne Johns: You have to express to go into a bottle for them to get fed through a tooth, which was my son's experience for his first two months. And because I had no desire and no interest in breastfeeding. Yeah, I didn't do any, I didn't educate myself not cause I was just like, he's just gonna be a bottle fat boy.

    [00:30:04] Jenne Johns: That's it. We're gonna take the bottle. We're gonna keep him, we're gonna keep it pushing and he'll be fine. But I had lactation consultant come to the peripartum unit when I was recovering from my belly birth surgery. And she educated me and let me know that mom's milk, breast milk was.

    [00:30:26] Jenne Johns: Liquid medicine for a NICU baby. Yeah. And that's all I needed to hear. I said this is something that will help keep him healthy. Keep him alive, or to set him on the path to help. I'll do it. And so when I first started pumping and expressing milk, it was painful. I didn't sign up for it. I was like, where is that bottle?

    [00:30:49] Jenne Johns: Where is that formula? Yeah. But it was one of the best things I could have made the investment in for him and for myself. Because that is one thing that helped to normalize that very abnormal experience. Yes. As an admitted mom, and before you know it, I became a milking cow. Like I had so milk in the freezers, they had to send some home.

    [00:31:11] Jenne Johns: They're like, you need an extra cooler. But then it came a period where that fast milk production slowed up and dried up. From the stress of having to return back to work. And this is why I always say NICU moms need a NICU mom buddy. Or they just need a buddy. They need someone who they know, who they trust.

    [00:31:28] Jenne Johns: It doesn't have to be their partner per se, or their husband, but someone who they trust with their emotions and their feelings. Cuz I'll never forget having a cousin. Shout out to my cousin, Rashida, hi Rashida, who came to visit me in the NICU during that stressful time. And we were in the pumping room, and I'm like I just nothing's coming out.

    [00:31:49] Jenne Johns: I don't know what to do. They're suggesting that I get on some pills. I've been trying this kale smoothie. Sometimes it works, sometimes it doesn't. But I need to be able to feed my son. And she just rubbed my arm and gave me the warmest hug and said, you'll do it. It's gonna be okay. And then the milk just flowed from there.

    [00:32:06] Jenne Johns: I became the cow again. I became, oh my goodness, to all of my breastfeeding moms out there, moms who are considering breastfeeding or to my NICU moms,

    [00:32:18] Dr. Jill Baker: if you just, yeah. I had to get a lactation consultant too. And she, yeah. Hi, Brooke Vero. She was the best. She was the best. Yep. Yep.

    [00:32:28] Jenne Johns: Although stressful, we turned that stressful situation into a positive.

    [00:32:32] Jenne Johns: And when my son came home with us, we had milk storage for about, I think he had three or four months worth of milk stored up when he came home. Oh my gosh.

    [00:32:44] Dr. Jill Baker: All you needed was to hear that one thing

    [00:32:48] Jenne Johns: her voice, her touch something worse. Yeah, it made me flow. So I think her poor to this day. Oh

    [00:32:53] Dr. Jill Baker: my gosh. So I love that idea of, or that need to just have some, you knows, we, I think we would call it social support, but to have someone who just gives you encouragement and who is there for you, especially in such a stressful situ.

    [00:33:16] Dr. Jill Baker: Okay, so wait.

    [00:33:17] Jenne Johns: I like to think of it as a mommy's helper. So you know how I like that a lot of women have doulas to assist and aid in getting to and through a healthy right and delivery I strongly and firmly believe in. We are advocating to get NICU admitted families, a mommy's or whether we call them a doula or not, but they need someone by their side who can help support them, encourage them, motivate them, because the journey, it gets rough and it's very unpredictable, minute to minute, day by day.

    [00:33:49] Jenne Johns: And just to have someone by your side who can be that non-judgmental, comforting, encouraging arm and ear in hand I believe would support these families in a very unique and needed way. With

    [00:34:02] Dr. Jill Baker: all of this that you were doing, advocating for your son in the nicu, being in the nicu, still working, And becoming a breastfeeding champion.

    [00:34:16] Jenne Johns: How did you The cow. You can call me a cow. I was a cow. A cow.

    [00:34:19] Dr. Jill Baker: You were a happy cow. How did you balance all of

    [00:34:23] Jenne Johns: those things? I don't mean to get too spiritual, but I am a woman of faith. God's grace. Yeah. I don't know how I did it. I don't know how I did it then. I can't wrap my mind around having to do it now.

    [00:34:37] Jenne Johns: But I did, and my son came out on the side of the spectrum. That's fairly unscathed, right? So something happened, right? With every, all the sacrifices, the schedule, adjustments the feeding, the advocating, it worked. But I don't know how I did it. Your. My faith. Yeah. If you're looking for something other than faith, I have nothing for you.

    [00:35:04] Jenne Johns: But God's grace was sufficient. Lots of prayers, lots of meditation, lots of journaling. Which is one of the things that I did a lot of when my son was discharged from the hospital for when we brought him home. The house was so quiet. It was so weird because the NICU is a very loud place, pre Covid.

    [00:35:26] Jenne Johns: Got it. Pre covid when everyone, and in not saying any, and everyone was allowed in the hospital, but in the NICU unit both parents could be there. Anytime the NICU was open and you could have guests come in. And at times all of us had guests, right? So you've got these babies whose machines are beeping constantly.

    [00:35:45] Jenne Johns: They breathe too light, the machines go off, they choke while they're feeding the machines go off their blood pressure, droppers, spike the machines, go off. The machines are always doing something. You've got nursing doctors interacting, talking about baby's charts. And unfortunately you have lost. So you hear parents wailing.

    [00:36:04] Jenne Johns: It's a circus in the zoo, right? It's a circus in the nicu. Excuse me, I called it the zoo. It's a circus in the NICU and it's loud. And when we brought our son home, it was so quiet, like you can hear a needle drop. And this was the most quiet I think I had heard since before he was born.

    [00:36:20] Jenne Johns: Oh my goodness. And other than his loud breathing, cuz he was a loud breather when he first came home. I used some of that quiet time to just process, start to process everything that we had just experienced. Good, bad, and indifferent. Yeah. And I journaled a lot. And in the process of journaling, I wrote and dedicated a few poems to my son, this beautiful miracle baby that I brought home.

    [00:36:46] Jenne Johns: And one of those poems at the time was called, you are so very special. But I just kept reading this poem to him over and his father said to me, Janee, you need to do something with that. It's powerful. It's more than a poem. Poem. And ironically enough, I always knew I wanted to be an author.

    [00:37:03] Jenne Johns: I always knew I wanted to write an author, a book. I like you, Jill, I lived in New York. I only survived New York for about 11 months, but I started working the train system in New York that

    [00:37:13] Dr. Jill Baker: never, if you're not from New York it's rough. It's rough,

    [00:37:16] Jenne Johns: it's a rough train's rough. But I did, I wrote, I started writing my first book on the train system going from work in Manhattan.

    [00:37:24] Jenne Johns: Oh. Going to Harlem. And when I moved home to Philly, I just kinda lost sight of that book. And then when when dad was like, you need to do something with this poem. I was like, that's it. This is the book. Because one of the other things that happened in the NICU was the nurses encouraged me to read to my son.

    [00:37:40] Jenne Johns: Oh, they said, Janae, you're here lot. I was usually the first mom to enter the NICU between six and seven in the morning, the last to leave between 10 and 11 or whenever they kick me out. Janae, you have to eat, you have to get some rest. We're, we'll take care of him. He's fine. I'm like, no, if he's so fine, why isn't he coming home with me?

    [00:37:54] Jenne Johns: And I was like, ok, so I'll act like I wanna go home and eat, but and sleep. But when we started to bring books to the nicu, because our family is just over the top, he had a whole library next to his bed. Oh my gosh. That came up to my, it probably came up to my hip from the floor to my hip of books.

    [00:38:13] Jenne Johns: And there were just certain books that he absolutely loved being read to him and others. He would look at me like, really? Mom, that book today? He was showing me he was giving me glimpses of his personality then. But When I read the books to my son, although I was thankful for each and every book that was donated to us, or gifted to us, or that we brought from my niece's library, none of these books, especially the baby lullabies, spoke uniquely to our situation.

    [00:38:38] Jenne Johns: We didn't full term baby. He, we weren't able to bring him home and tuck him into bed at night and turn the light out. We had to part ways with him in the hospital. And entrust his care to Yes. Who enjoy strangers. To hope that when we returned in the morning, he would be there for us. He

    [00:38:53] Dr. Jill Baker: would be fine.

    [00:38:53] Dr. Jill Baker: Yeah.

    [00:38:54] Jenne Johns: I took that poem. You are so very special. And Dad put a fresh name on it and put one foot in front of the other. And two years later, self-published Once Upon a creamy book. Oh my gosh. Which as you mentioned in my intro at the time, was the first lullaby for NICU admitted babies. Oh my God.

    [00:39:13] Jenne Johns: And

    [00:39:14] Dr. Jill Baker: Ok, so you're a trailblazer too.

    [00:39:17] Jenne Johns: We knew as a family we needed to give something back to that nicu cuz I was horrible. I was I felt horrible when I, when my son graduated and we were discharged and I was like, I'm sorry. I'm really not this person in real life. That was just the NICU me.

    [00:39:29] Jenne Johns: That's not the real me. So let me introduce you to the real me. What else can we, what else can be

    [00:39:36] Dr. Jill Baker: expected? I

    [00:39:37] Jenne Johns: gave those people a run for their money. I made them work hard for our presence and then nicu, but it was worth it in the long run. But

    [00:39:43] Dr. Jill Baker: I knew, but don't you do, but honestly, do you feel that.

    [00:39:48] Dr. Jill Baker: If you didn't do that, that the outcomes for your son may have been different.

    [00:39:55] Jenne Johns: I believe that wholeheartedly because

    [00:39:57] Dr. Jill Baker: I feel like at every step of th this process with birthing our, getting pregnant, birthing our kid, birthing our babies and ho and praying that everything happens, that we get them home safely and we get home safely, that we have to advocate for ourselves because that the extra care and attention just is not a

    [00:40:20] Jenne Johns: default for us.

    [00:40:22] Jenne Johns: It's not a default, and unfortunately I felt like if I didn't act the way that I did or communicate the way that I did, I will be ignored and look at what instances when we speak and we share a concern or we express something that we feel is not right, even though I don't discredit that these doctors and nurses have probably individually and collectively had more.

    [00:40:47] Jenne Johns: Experience delivering healthcare than the years I've lived. I don't take that away from them. However, this is still my son. And there is something, there were things inside of me that I couldn't clearly articulate, but I felt intuitively, something's not right with my son today. I need you to pay attention.

    [00:41:06] Jenne Johns: I need you to run some tests. I need you to sit down and let's look at some labs. Something's not right. And every time I had that gut feeling that something wasn't right with my son, something wasn't right and someone needed to pay more attention to him. And so I absolutely firm believe in, I believed that had I had been that quiet mom that sat around and went along and get along, yeah.

    [00:41:27] Jenne Johns: My son could have had a different, Or I showed up in the way in which I did and I got paid attention to because I made ano a lot of noise until I did get that attention and they happy to see me go, not so happy to see my son go. They were happy to see him go because he was healthy enough to go.

    [00:41:41] Jenne Johns: But it was like, get your mom off this nicu, let her go be the problem to your pediatrician now. But in all seriousness, that is a lot of what we do at once upon a premium nonprofit that we'll get to in a moment. But we encourage moms to speak up and speak loudly and speak often about the care that they're receiving because the data and the statistics are showing us that when we don't, we can have some of the most adverse and harmful

    [00:42:06] Dr. Jill Baker: outcomes.

    [00:42:07] Dr. Jill Baker: And another thing you were saying regarding, all the years of experience that, medical doctors have, and healthcare providers and nurses have. I think that also lends to, and I'm not speaking for medical doctors but I've had medical doctors say that sometimes it, it leads to a feeling of, yeah, this, it's gonna be all right.

    [00:42:32] Dr. Jill Baker: I've been through this hundreds and hundreds of times, and by the time they get to you, maybe you are like, your son is like the 1001 baby that they've worked with. Okay, but this is the first time for you. It's the first time for your family. And so there has to be some sort of reset, number one and number two, an understanding of any, cultural issues or communication that may not be I ideal for the family.

    [00:43:06] Dr. Jill Baker: And some changes could, can be made. Like what the. What that supervisor said to you in the beginning. I think that she was saying to you that she could tell that you are a person who you're going to be, you're not gonna be silent. You are going to communicate, you're gonna advocate for your son.

    [00:43:26] Dr. Jill Baker: And I think that she just probably wanted you to just go along with the plan. And there's probably other, there probably were other black women and before you that just went along with the plan. Absolutely. And that doesn't help

    [00:43:44] Jenne Johns: it. It doesn't help. It perpetuates status quo and a paternalistic delivering healthcare.

    [00:43:50] Jenne Johns: And I don't agree with it because I firmly believe that parents are part of the care team as well. And I was treated like an outsider instead of someone who was a member of my son's care team. Which is absolutely critical when you have a family who's going to be in that NICU every single day. For months, I wasn't a missing.

    [00:44:09] Jenne Johns: We weren't missing an action. Parents, we were by that baby's bedside every day, right? And so when clinical rounds came up, we got the results of the clinical round on the backend instead of us being incorporated to say. And what view do you have? What questions do you have? What things can we clarify?

    [00:44:24] Jenne Johns: How do you feel as his parent? Do you agree with what we're, no, it was none of that. And so maybe that was her purpose or her intention of our conversation. I wish she would've just said what she really wanted to say, instead of referring me to work with the only black person. But it's okay for two reasons.

    [00:44:43] Jenne Johns: One, my son was able to come home, two. That story has now made once upon a premium nonprofit, a lot of money because we packaged it and put it into our eLearning courses where we go back and train healthcare professionals the correct way, right to treat black birth. And that's right. Women families who are admitted in the NICU and to check their own personal bias.

    [00:45:05] Jenne Johns: They're implicit and explicit bias. So had it not been for that conversation and a few oth other ugly moments that I had in that nicu, a lot of what we're doing and once upon a premium as a nonprofit probably wouldn't exist. But I thank her because it's given an international opportunity to shed light on things that need to happen differently in the nicu.

    [00:45:26] Dr. Jill Baker: Yeah, cuz I think she probably just started this fire. And the, and this passion in you that led you to writing your book, starting, the organization once upon a Premium Incorporated. So can you just share with everyone, what are some of the main goals for Once Upon a Preemie Incorporated and kind of one of the biggest accomplishments thus far for you all?

    [00:45:56] Jenne Johns: Wow. Oh my goodness. The most simplistic way that I can describe our goals and our vision for this organization is really just to transform the way that healthcare is delivered to black birthing women and black preemie families. We know what we. And our experiences and our voices hold weight and value if they're just listened to.

    [00:46:20] Jenne Johns: And so we create and curate opportunities for healthcare professionals to almost have to listen to our voices our experiences, our advocacy points, our needs for the purposes of them going back to their respective institutions and doing better. Yes. This isn't rocket science. There's always room for improvement.

    [00:46:39] Jenne Johns: There's always room for improvement, this's your quality improvement goal for the year, guys exactly. Oh man. One of our biggest accomplishments.

    [00:46:48] Dr. Jill Baker: Okay. It doesn't have to be one as many as you wanna tell me.

    [00:46:52] Jenne Johns: I love it. I love it when we're able to donate our books to families who are bedside with their babies and it brings them to tears, and they just feel like they have someone who understands and they feel like they have this virtual advocate in us, or they just found the right words that they couldn't articulate that they could then give to their babies to feel like.

    [00:47:12] Jenne Johns: We're here for you. We're comforting you. So that's always a biggie for us. I love love when parents share with us how the book moved them and helped encourage them. I love it when we have healthcare professionals and this is a really big win for us. Who go through our e-learning courses. So we set up virtual learning courses for healthcare professionals that are accredited.

    [00:47:32] Jenne Johns: We beat 'em up pretty bad, but then, we give them the tools that they need. We give them the tools that they need to go back to delivering care better and different for black women and babies. But I love it when they go through the courses and they have these light bulb moments and they say, these are things that I can actually change and I'm going to change because I have to.

    [00:47:49] Jenne Johns: Because I'm a human at my core and I never want anyone to leave my care feeling less than or feeling disrespected or not heard. And we had a system in Texas, we had a NICU in Texas that made all 125 of their healthcare professionals, doctors, nurses, social workers, lactation consultants, the registration clerk go through our e-learning courses.

    [00:48:08] Jenne Johns: Wow. And they completely eliminated a disparity between black and white moms and black and Hispanic moms. They had a four year issue. So for four years. Yeah. Hundred 25 staff couldn't figure out how to help. Black birthing moms who were admitted to the nicu, start to breastfeed and to continue to breastfeed once they were discharged from the nicu.

    [00:48:28] Jenne Johns: Our courses are one hour in length. We have four one hour courses. Wow. Two months after completing our four courses that disparity was completely eliminated. Oh my goodness. So for four years they couldn't figure an hour in four hours. So four hours of just paying attention to black moms like you and I, sharing their journey, sharing their experiences, sharing their recommendations on how to improve paired off with healthcare professionals who are doing the transformation work.

    [00:48:57] Jenne Johns: Faculty are twofold. So listening to eight people total, four healthcare professionals and four parents across four hours helped them to completely eliminate a disparity. And that was in, that was within one year of us standing up our e-learning courses. So that was a really

    [00:49:13] Dr. Jill Baker: big organization and sometimes they think, oh, it's gonna be too much.

    [00:49:16] Dr. Jill Baker: It's gonna take too much time. That's not

    [00:49:19] Jenne Johns: the case. Another big win for us last year November 17th, which is premium awareness Day. So please go purple with us every November 17th. We hosted our first in-person conference here in Philadelphia, and we had standing room only. We had people waiting outside in the lobby who knew the conference was sold out, who were like, we're just here to see if we can get a seat if someone doesn't show up.

    [00:49:41] Jenne Johns: And to know that little lone me from a little girl from West Philly who had her early birthright, had a belly birth who didn't like the care that she received and then took action around that could bring 116 healthcare professionals from across the country together to talk about these issues and right to set them on the path to go back and change the way that they communicate, change the way that they set up their quality improvement programs, change the way that they delivered black centered care for black moms and babies.

    [00:50:10] Jenne Johns: Just, it overwhelmed me, but that was a really big organizational win. Oh my goodness.

    [00:50:18] Dr. Jill Baker: You are kicking butt.

    [00:50:20] Jenne Johns: You're doing it. Thank you. We're just doing the work that we know needs to be done and can be done. And it's not gonna take a move of us having another wave of covid for us to get it done.

    [00:50:31] Jenne Johns: We gotta get more than half the world vaccinated. To bring Covid rates down. I firmly believe we can figure out how to treat women and keep moms and babies alive and prevent a NICU admission if we really wanted to.

    [00:50:46] Dr. Jill Baker: So for women who are listening who may be pregnant or early in their pregnancy, sisters, what are a few things, maybe a few tips or guidance that you can give them for things that they can do or things they can try to do that would be protective in.

    [00:51:09] Dr. Jill Baker: And maybe things for them to think about that could maybe pre prevent a preterm birth and then just what you know, and then what to do if they're in that situation.

    [00:51:25] Jenne Johns: To my birthing mamas, or soon to be expecting moms, listen to your body. I encourage women to listen to their bodies and when they feel that something isn't right, you have to speak up.

    [00:51:41] Jenne Johns: And if who you're speaking up to is landing on deaf ears, as much as people don't like switching providers, in our case, it could be a matter of life and death for your baby. So if you feel like that relationship or that respect and that critical listening ear is not on, you're expressing a concern with who you're receiving care from, it may be time for you to move on.

    [00:52:04] Jenne Johns: The second thing I share with Mamas is soon to be Mamas, is that doulas work. They have worked for us culturally before Western Medicine was a part of our orientation to delivering babies. And right now, doulas are doing what the healthcare system can't or refuses to do. So a lot of health insurance companies are investing in connecting moms with doulas so that the financial costs can be completely eliminated or significantly.

    [00:52:35] Jenne Johns: If you haven't done so already, please reach out to your provider and to your health insurance provider to engage a doula and or if you, of course, can afford to hire a doula on your own, please do. If I ever find myself in that place again, which I seriously doubt at this point, but if I find myself at that place of going through another pregnancy journey, I'm not doing it without a doula.

    [00:52:56] Jenne Johns: If you know that you are going to be that high risk mom who has already been told that you're going to land in the nicu, I would start to reach out to the NICU to build some type of rapport and communication, or at least know who your baby is going to be in the care.

    [00:53:12] Dr. Jill Baker: I would love that advice. Yes.

    [00:53:14] Jenne Johns: Yes. And just start to educate yourself on what it means to have a baby in the nicu. Being in the NICU means that you have to learn a whole new language. We shouldn't have to, but we do. It's a whole new language. It's a completely different

    [00:53:28] Dr. Jill Baker: word. This just an extension of all the language we have to learn when we're pregnant.

    [00:53:33] Dr. Jill Baker: Exactly, yes. It's just another extension. Exactly. But

    [00:53:35] Jenne Johns: They only speak nicu, speak in the nicu. They don't speak. We're in there just trying to be mom and dad. There are amazing organizations out there like Globe preemies Alliance for Black NICU Families and a few others who have taken the steps to create some really easy to follow guides for families who know that they're going to land in the NICU to at least have that introduction.

    [00:53:57] Jenne Johns: There's a website on Draeger's Drager it's, their website is called Babies First. I have a couple articles on there, just introducing families and parents to what it means to be in the NICU and how to humanize it for you and for your baby. So I encourage people to check out those resources if they needed.

    [00:54:15] Jenne Johns: And by all means, please sign up for our newsletters at once Upon a preemie. We share tidbits every now and then for parents, and specifically for healthcare professionals, and hang out with us, so on social media because we'd love to hear from you and we'd love to bring you into our Once Upon a Premium family.

    [00:54:33] Dr. Jill Baker: I love that. I love that. Gave them all these good resources for where they can start. I think this is going to just change, hopefully some many potential pregnancies right now for any, mothers who are listening and, I just, this is such a real, just such a real thing. Cause every pregnancy I've had, I've worried about having to be in the NICU and.

    [00:55:03] Dr. Jill Baker: And you're sharing and telling the world why it's something we need to worry about and why it's something that we really need to put as much attention to, particularly when the babies are still, as you said, are still inside of us. So even with everything and all the disparities and inequities that are still present right now, do you have any hope or is there anything hopeful that you wanna share with the audience about prenatal and neonatal disparities for black women and women of color?

    [00:55:41] Jenne Johns: Absolutely. We are the solution guys. Our lived experiences and our stories and our journeys don't and should not fall on deaf ears. If you've had a journey or someone in your community or your family has had an experience or a journey that. Needs to be shared. Please know that there are many organizations like mine out there in every state that would welcome engaging you to speak about your experiences and not only speak about your experiences or those of your loved ones, but to also start to advocate for what we know we need to see happen in our country at the local, at the state, and at the federal and congressional levels.

    [00:56:24] Jenne Johns: Although we hear more of the negative on the news than we do the positive, there are glimmers of hope in each and every state around the black maternal health and neonatal crisis. I believe the further we get Life past Covid. The more, hopefully we'll start to see the narrative around the blur the black maternal health crisis shift a bit from gloom and doom to birthing joy, which is the place that we start from.

    [00:56:49] Jenne Johns: That's our orientation to delivering and Right. Yes. Culturally, right? Yes. And ancestrally, it's been joy. It's been the the best time in a woman's life. Yeah. We are advocating on the ground to see as many changes as we can make possible, but we can't do it alone, and we can't do it off of a penny and a prayer.

    [00:57:09] Jenne Johns: So the more voices that we have at the table when we're going to advocate for funding and program changes in getting doulas and in getting resources into the hands of birthing women into NICU admitted families the more we'll be paid attention to and the more we'll be supported so that we can support our community and again, I love the question that you asked.

    [00:57:30] Jenne Johns: If you know someone who's pregnant or if you are pregnant, please just be a resource. Please. Just be a resource to love on a mom or a soon to be mom so that she doesn't feel alone on her journey. And if you see she's not herself or she's not okay please be that resource to help her get the help that she needs, if you can.

    [00:57:49] Dr. Jill Baker: I love that. I love that. Cause we need love the whole way, the whole time that we're pregnant. We need as much love as possible. I love and light Jenae, thank you so much. Thank you so much for being on the show. But this will be only the first time. So my hope is that you'll be, a regular guest on the show.

    [00:58:13] Dr. Jill Baker: As much as you can, with your time. I definitely want us to do something special together for world Prematurity Day in November. Anything that I can do with you all, but I definitely want to have a special show again, just to increase the awareness of this issue in our community and the work that that you do and your organization does.

    [00:58:42] Dr. Jill Baker: So thank you all for tuning in today. Thank you again, Janae Johns for joining us today and sharing all of your knowledge. Jene, can you let the listeners know how they can find you or connect with you? On social media.

    [00:58:59] Jenne Johns: Thank you so much for having me, and thank you for creating space for us to have this conversation.

    [00:59:04] Jenne Johns: This is a very important conversation and we're already prompting our continued partnership in November. I'm excited. Yes. Stop already. I'm excited already. But we please please connect with us. We're on LinkedIn. Our LinkedIn handle is once upon a premium academy. We're also on Instagram at once preemie, and we're also on Facebook at once.

    [00:59:26] Jenne Johns: Upon a pre, I wish we could have secured all once upon a premium across all three platforms. Once it's so hard,

    [00:59:33] Dr. Jill Baker: it's hard

    [00:59:33] Jenne Johns: to get all of them. Instagram is once a preemie Facebook once upon a preemie, and LinkedIn is once upon a Preme Academy, and you can always connect with us on our website at www.onceuponapreemie.org.

    [00:59:49] Dr. Jill Baker: Thank you sister so much. Thank you Jana.

    [00:59:54] Jenne Johns: 3,

    [00:59:55] Dr. Jill Baker: 2, 1. Yeah. Thank you for listening to this episode of Maternal Health 9 1 1. Please follow the show on Instagram, Facebook, and Twitter. Feel free to DM me with your questions and thoughts or to share your infertility, fertility, and maternal health story. For more information on this podcast and your host, visit ww dot dr joe baker.com listening to the show on Apple Podcast.

    [01:00:21] Dr. Jill Baker: Please rate and review it. It really helps the show and the feedback is welcome.

    [01:00:37] Jenne Johns: Here you go.

 

It's alarming to know that 1 in 10 babies is born preterm in the United States, with the highest rate among black infants at 14.2%. This is definitely a concerning issue that needs to be addressed.

It's great to hear that your friend and colleague, Jenne Johns, will be sharing insights on this topic. Understanding why this is happening is the first step toward finding a solution.

In this episode, Dr. Jill and her guest talked about what inspired the creation of "Once Upon A Preemie, Inc." for many families who have experienced premature birth, the journey can be overwhelming and isolating. Once Upon A Preemie was founded to offer support, resources, and a community for families with preemies.

In terms of improving the rates of premature birth, education, and awareness are key. Healthcare professionals can play a crucial role in educating expectant mothers about the importance of prenatal care and healthy lifestyle habits. Additionally, addressing social determinants of health such as access to healthcare, poverty, and discrimination can also help reduce the rate of preterm births.

Some details to note from this episode:

  • The U.S. remains among the most dangerous developed nations for childbirth.

  • MARCH OF DIMES STATS
    Two babies die every hour in the U.S.

  • The preterm birth rate has risen for the fifth year in a row.

  • In 2021, 1 in 10 babies (10.5% of live births) was born preterm in the United States.

  • The rate of preterm birth in the United States is highest for black infants (14.2%), followed by American Indian/Alaska Natives (11.6%), Hispanics (9.8%), Whites (9.2%) and Asian/Pacific Islanders (8.8%).

  • During 2018-2020 (average) in the United States, preterm birth rates were highest for black infants (14.2%), followed by American Indian/Alaska Natives (11.6%), Hispanics (9.8%), Whites (9.2%) and Asian/Pacific Islanders (8.8%).

  • babies born prematurely may experience long-term intellectual and developmental disabilities, along with:

    • Breathing problems

    • Feeding difficulties

    • Hearing and vision loss

    • Cerebral palsy

About Our Guest:

Jenné Johns, MPH a Philadelphia native (TEMPLE GRAD), is a national health equity thought leader, author, and advocate for reducing healthcare disparities. While advocating for the needs of her own son, Jenné wrote, Once Upon a Preemie, the first of its kind children’s book written for parents of preemies while in the NICU. A graduate of the Disparities Leadership Program at Harvard University Medical School, Jenné has over a decade of experience advocating for policy, and community changes to improve health equity and health outcomes for low-income communities. She also led quality improvement and health equity transformation strategies with the nation’s largest health insurance companies.

Jenné is currently, President of Once Upon A Preemie, strategies with the nation’s largest health insurance companies. Jenné is currently, President of Once Upon A Preemie, Inc, a Black women-led non-profit organization committed to pioneering solutions for neonatal equity to center Black preemie family experiences.

Jenne is also and Health Equity Column Editor for Neonatal Today.

 
 

Learn more about Dr. Jill here.

Have a story to share? Send us an email at maternalheatlth911@gmail.com

Follow Dr. Jill:

LinkedIn:

https://www.linkedin.com/in/dr-jillian-baker-61543222/


Instragram: https://www.instagram.com/explore/tags/maternalhealth911/

and

https://www.instagram.com/drjillbaker/

 
Jillian Baker
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