From Lived Experience to Legislation: The Fight to SHINE a Light on Stillbirth

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Welcome to All Teach, All Listen Beyond the ECHO, examining public health challenges
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through an interdisciplinary lens, amplifying diverse voices,
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encouraging critical thinking, and promoting collaborative civic action across the healthcare system.
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Each episode pairs professionals from different disciplines to model how cooperation
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can improve outcomes and equity in care.
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This podcast is powered by the Eagleton Institute of Politics as part of Democracy Week 2025.
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I'm your host, Sean Cuddihy. For our sixth episode of the season,
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we're going to discuss how to become involved in writing and implementing policy.
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We are joined by Jennie Sherlock-Loeb and Debbie Haine Vijayvergiya
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to discuss the work they have done in writing, advocating,
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and implementing policy.
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Jennie Sherlock-Loeb is the Chief Clinical Officer of the Cooperative,
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where she focuses on clinical education, fetal infant mortality review,
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and nursing leadership.
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Jennie is also currently a Fellow of the Women's Political Caucus of New Jersey.
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Prior to this role, Jennie served as a childbirth educator and bedside nurse
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in labor and delivery and mother-baby.
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She achieved her Bachelor of Science in Nursing degree from Westchester University
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in 2011 and a Master of Science in Nursing from Drexel University in 2015 with
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a focus on nursing leadership and health systems management.
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Jennie is specialty certified in inpatient obstetrics with a subspecialty certification
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in obstetric and neonatal quality and safety and utilizes her clinical expertise
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with the development of educational programs and initiatives.
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Recently awarded the distinction of an Advanced Nurse Leader certification by
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Sinova, Jennie is dedicated to the future of the nursing profession and its impact
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on maternal child health outcomes.
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In 2011, Debbie Hain, Vijayvergiya's daughter, Autumn Joy, was stillborn.
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Determined to give Autumn's short life great purpose, she has since become a
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powerful advocate at both the state and national level, working tirelessly to
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put stillbirth on the map in the United States.
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Over the years, she has developed and championed numerous legislative efforts
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and initiatives aimed at improving stillbirth outcomes for families.
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In 2013, Debbie assisted in drafting the Autumn Joy Stillbirth Research and
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Dignity Act, New Jersey's first-ever stillbirth legislation,
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which successfully passed the following year in 2014.
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By 2016, she expanded her work beyond New Jersey and has spent the past 10 years
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working with members of Congress and their staff to advance federal stillbirth legislation.
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The Federal Bicameral and Bipartisan
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Stillbirth Health Improvement in Education, or SHINE, for Automatt.
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This common-sense policy would authorize funding to fill the gaps around data
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collection, reporting, education, and awareness, critical steps needed to prevent
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these unnecessary tragedies.
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Debbie can't help but hope that 2026 will finally be the year it passes.
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Thank you both for joining. Let's get started.
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Jennie, we'll start with you. You are passionate about policy,
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from drafting to implementation.
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What drew you to this work? Thanks, Sean. I can say I'm really drawn to being
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a part of the important decisions that are made.
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And that can be in a variety of places where those decisions get made.
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But they ultimately influence the work of me, my team, and really just the role
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and the scope of a registered nurse.
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I've also seen, you know, throughout my career as a nurse that many bills,
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policies, or regulations can directly impact the families that my team serves in South Jersey.
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And so for me, much of this is personal and wanting to be more involved and
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have a greater impact on the development of these different pieces of legislation or regulation.
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Debbie, I have the same question for you. Thank you, Sean, for having me here.
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For me, it was lived experience of losing Autumn.
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You know, I ultimately what led me to this work really was the disappointing
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care that I received in the hospital, the stigma that surrounded stillbirth
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that I never knew existed,
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and really the isolation that I felt after I returned home.
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You know, it was a promise that I made to Autumn when she died that I was going
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to, you know, do whatever I could to protect other people from experiencing
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this life-altering, like, tragedy and that her life wouldn't be lost in vain.
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So I feel like those are the four pieces that really brought me to this place today.
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So you both are very drawn to this work.
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What are some examples of your work that you're the most proud of?
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Debbie, maybe we'll start with you for this one. The first time someone hears
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about stillbirth should not be when it happens to them.
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And that was my experience.
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And my doctors also did me a huge disservice by telling me that losing autumn
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was as rare as being struck by lightning.
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And in 2011, when I lost Autumn, there were approximately 25,000 stillbirths
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that year. And that didn't really feel so rare.
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And I figured if I didn't know how common, in my opinion, stillbirth was,
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and my doctors didn't really know, then maybe no one knew.
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It was really my experience in the hospital. I just wanted to ensure that others
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weren't left unsupported the way in which we were. I.
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Started off my advocacy journey by writing articles, by talking with anyone
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that I could, by speaking at various conferences.
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And in 2012, I had my first opinion op-ed published in the Star Ledger on my experience,
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and it caught the attention of the former Senate Majority Leader,
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Loretta Weinberg and as a
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mother and a grandmother she empathized with what I
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had been through and wanted to
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to help policy wasn't really on my
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radar I really just wanted to go and spread awareness and talk to people and
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and and let folks know the risks and realities and thinking that just by sharing
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that message we would you know be able to improve outcomes but then when she
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approached me about pursuing policy,
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how was I, I would, I couldn't say no.
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And so we worked together on New Jersey's first ever stillbirth legislation,
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which we named after my daughter.
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And that was when in 2012, when we introduced the Autumn Joy Stillbirth Research and Dignity Act.
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So Jennie, I noticed that you helped with the implementation of that act.
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Could you maybe discuss some of your work doing that?
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Yeah, absolutely. So in 2015, I was working, I was still a newer nurse.
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In the beginning of my career, I was working in lever and delivery.
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And I was actually in graduate school.
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And I started an internship with the cooperative, which is the Maternal Child
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Health Consortium in South Jersey.
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And they were looking for some support for their member birth facilities in
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how they would implement the
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recent legislation, the Autumn Joy Stillbirth Research and Dignity Act.
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At the time, I would not say policy was something of even interest to me.
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I was certainly looking at the way health systems were ran and the important
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role of the nurse leader, but I was really somewhat unfamiliar.
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What I was really familiar with, however, was caring for families when they
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experienced perinatal loss, because as a labor and delivery nurse,
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that was, you know, a part of my job and a part that I was really proud of that
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I was able to to care for families,
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you know, on potentially the worst day of their lives and be able to be there
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and to treat them with with compassion and sensitivity.
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And so when I began my internship with the cooperative,
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and I had the opportunity to read the Autumn Joy legislation and really read
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a lot about Debbie and her family and her experience, I really felt so connected.
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Although I never, you know, had met Debbie at the time, but just the amount
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of time that I spent exploring the legislation and the considerations that were presented.
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And the task at hand to me then was to work with all of the hospitals in South
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Jersey that deliver babies in making sure that they were meeting the expectations
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as part of the legislation.
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And so I was reaching out to nurse leaders at each facility to say,
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you know, where are you at with the implementation of this legislation?
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You know, what are you currently doing? Have you met these requirements? Do you need support?
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And that was a really interesting experience for me. And the first time that
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I really navigated the idea that where you deliver your baby could matter in
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the care that you receive,
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and sometimes that's based off of where you live, where you can access care,
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because it was not equal across the board.
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Some of the hospitals I talked to at that time had no idea that there was new
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legislation that had been passed and that this was an expectation of them.
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Other hospitals were aware of it. They were working on it, but still needed some support.
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And then I would say about one or two were really close already at that point
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in meeting all of the expectations.
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So there was really a wide variety. And by talking with them about the expectations
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and hearing their concerns, their questions,
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we were able to provide them some support and education about how they could
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meet these expectations and ultimately provide the level of care that was imagined
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with the Autumn Joy Stillbirth Research and Dignity Act.
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What should people know who want to get into this work know about the time commitment
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of kind of crafting policy?
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Debbie, I can have you start with that one. Well, I had no idea that when I
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started down this path that I would still be here.
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Advocacy was definitely not a part of my goals in life.
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But I think for me, it really started off so positively with the policy in New
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Jersey because it passed unanimously out of the Senate and the Assembly.
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And there was such widespread support. And I mean, there's just such a need
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for that I felt that this shouldn't be that hard.
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And so when I decided to pursue federal policy, I thought, oh,
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this will be, you know, this will be easy.
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I mean, look at what we've accomplished in New Jersey. How hard could it be?
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And I still find myself shocked that, you know, here we are,
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and I'm still doing this almost 15 years since Autumn died.
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My favorite story is I visited the hill for the
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first time in 2014 and I went
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and I was had meetings with various different offices and I
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would have to like repeat myself multiple times
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when I would say stillbirth and then have to give a definition and I remember
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my friend who was with me who who was a you know she used to work on the hill
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and she had said to me how do I it's it's a marathon it's not a sprint because similar to a marathon,
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advocacy takes patience and perseverance.
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It's really important to celebrate the small victories.
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I think it can be very daunting and overwhelming if you just feel that you are
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are on this hamster wheel per se, and you're just not getting anywhere.
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And while I wish we were much further along with our work to improve stillbirth
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outcomes in the U.S., I do see the changes that have been made.
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And I think, you know, a perfect example of patience is that in 2021.
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We had the Stillbirth Health Improvement and Education for AUTOMACT introduced into Congress.
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It was introduced on October 5th, 2021, with the goal of funding improved data
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collection, awareness, education, and research.
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And it's a bipartisan bill.
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And almost two months to the day after it was introduced, it passed almost unanimously
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through the House of Representatives. It was 408 to 18.
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And so, you know, that that kind of is why I thought, oh, maybe this will be
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easier than in New Jersey, because look at how quickly this just happened.
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At that time, I had been working on the Silberth Resource Center of New Jersey
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legislation, and I just was so impressed with how, you know,
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efficient Congress was at that time.
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I was like, look at that. And so, you know...
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The next session, the following year, 2022, was introduced into the Senate.
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And as they say, you know, we ran out of time. We couldn't advance the bill.
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But when we reintroduced it in 2018, I was feeling really motivated.
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I was really encouraged. I was like, wow, well, you know, we passed the bill
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in almost two months' time, almost unanimously through the House.
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Let's just see what we can make happen in the 118th Congress.
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And we made great progress. We were able to get the bill to pass unanimously
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out of the Energy and Commerce Committee, which is the first hurdle that you
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have to get through in Congress is getting it through the Committee of Jurisdiction.
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So we did that. And I feel like I spent the whole following year trying to get
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the bill to advance out of the House or the Senate,
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even to get it included in an end-of-year package, and we didn't.
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And it was so devastating because I was like, what's everyone thinking?
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Everyone was in such strong support of this bill. It's bipartisan.
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It's non-controversial.
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It's, you know, to ensure a brighter future for families.
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And when it didn't move in the 118th, I won't lie, I did question,
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what am I doing here? And what do I do?
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And am I going to come back with a bill? and I was in D.C.
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In the beginning of January for the new member swearing-in ceremonies.
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And I ran into a few different members of Congress there that were shine champions.
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And they basically told me I had to come back. They were like,
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we've made so much progress.
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Issues like this take so much longer than where we are right now.
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We are so close and I believe them. And so here I am. I'm back for a third Congress with the bill.
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And it's just, it's hard.
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It's really, really, really hard, but it's so hard to walk away when you see so much support, right?
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You know, it's given advocates a platform to share their babies' stories.
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It's given stakeholders something to think about and another space within the
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maternal health umbrella to engage in.
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And I think that it's given members of Congress the opportunity to support a
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bipartisan bill that we know is going to make a difference in the lives of so many people.
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And so I couldn't walk away. And that's why I'm here.
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And I'm not, I don't intend to go anywhere.
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But it, you know, it's been 15 years of advocacy.
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And I really, I really, really, really thought that we would be somewhere different
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further down the line. But like I said earlier, I do focus on the small victories
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because I think that they're so important.
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And hopefully, you know, we'll
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see this issue garner more attention before the end of this Congress.
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And, you know, the goal is to make something happen.
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We'll see. But that's the goal. I think that you just need to keep your eye
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on the prize and know that change will come, especially if you have champions in your corner.
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And whether it's lawmakers, stakeholders, and just know that if you're doing
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this and you're not alone, it's like with everything, it takes a village.
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Yeah, I think I would I would add, Sean, that, you know, what I have observed
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is, again, I was supporting hospitals with implementation back in 2015.
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I later came to work for the cooperative in 2020-22.
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And in 2023, I was part of the team that was able to secure funding for New
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Jersey's first ever stillbirth awareness campaign.
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And that was when I formerly officially got to meet Debbie.
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And so what I would say is, you know, the fight continues and it's certainly.
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You know, the passing of legislation, even the implementation of regulations.
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It doesn't mean that we're all done.
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It doesn't mean that the fight is over. And so a continued need for support,
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resources and funding exists.
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We see stillbirth, you know, occurring between 600 and 700 babies lost in New Jersey every year.
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And there's certainly, you know, other health outcomes that get talked about
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more, they get more support, they get more funding.
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And so even with New Jersey's first ever stillbirth awareness campaign,
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you know, we're looking to continue to move this forward.
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And it's such a privilege to be able to work with Debbie now,
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you know, side by side. And, you know, it took time.
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Again, it was 2015 that I first got to learn of her and Autumn.
00:17:39.360 --> 00:17:43.240
And now we're here working side by side. But I would say, you know,
00:17:43.460 --> 00:17:44.840
knowing that when something's important,
00:17:45.320 --> 00:17:49.620
you know, giving it the time it needs and the commitment to seeing it through
00:17:49.620 --> 00:17:53.800
and that it is going to take time, especially when we're looking to see progress
00:17:53.800 --> 00:17:55.420
as it applies to outcomes.
00:17:55.620 --> 00:18:00.900
It's going to take time, but, you know, remaining patient and vigilant and committed to the cause.
00:18:01.540 --> 00:18:05.560
What I think has been so great to hear about the work that you're doing is that
00:18:05.560 --> 00:18:08.480
it does reach across political lines.
00:18:08.480 --> 00:18:12.500
It has a lot of common ground for people. Maybe Jennie will start with you for
00:18:12.500 --> 00:18:17.860
this one, but how do you kind of write policy that can help people find that common ground?
00:18:19.125 --> 00:18:22.905
I think that we have to remember that we can have, you know,
00:18:23.025 --> 00:18:26.285
different belief systems. We can be members of different political parties.
00:18:26.705 --> 00:18:30.685
You know, I'll take it one further. We may not all speak the same language or
00:18:30.685 --> 00:18:32.265
have the same religious beliefs.
00:18:32.565 --> 00:18:36.065
You know, diversity is a gift. And especially here in New Jersey,
00:18:36.485 --> 00:18:42.085
you know, we have, you know, such a rich group of people and families that live here.
00:18:42.305 --> 00:18:47.065
That is such an advantage to us to have so many different voices and perspectives.
00:18:47.065 --> 00:18:53.365
And ultimately, you know, we're working together to improve the health and well-being of families.
00:18:54.005 --> 00:18:57.045
You know, it's hard to argue with that.
00:18:57.645 --> 00:19:01.265
And, you know, we're serving our communities, our state and beyond.
00:19:01.585 --> 00:19:06.225
I would recommend, you know, working together. You know, we all have a,
00:19:06.245 --> 00:19:07.765
you know, a shared common goal.
00:19:08.005 --> 00:19:13.525
And so when possible, be data driven, utilize evidence-based practices.
00:19:14.285 --> 00:19:20.045
You want to be able to, especially if there is a cost or a funding ask that's
00:19:20.045 --> 00:19:23.285
being made, you know, use the data that's available.
00:19:23.285 --> 00:19:28.465
We are really, you know, able to look at outcomes in an objective way.
00:19:28.465 --> 00:19:33.905
We have such great evidence-based practices available now and use that when you're drafting.
00:19:34.725 --> 00:19:38.905
You know, whether it's a policy, a regulation, you know, if you're working like
00:19:38.905 --> 00:19:40.325
Debbie, with legislators,
00:19:40.845 --> 00:19:46.225
you know, really use that data to drive your policy because it is easier to
00:19:46.225 --> 00:19:50.025
really stand on that and look back and say, you know, this is where we are.
00:19:50.205 --> 00:19:52.705
This is how we know what direction we should be moving in.
00:19:53.025 --> 00:19:58.185
And then upon implementation, you can look back and compare in an evaluation phase.
00:19:58.485 --> 00:20:02.025
I'd also just add to treat everyone you meet with respect.
00:20:02.425 --> 00:20:07.845
You know, Again, they may have differences of opinion, but their voice is important.
00:20:08.305 --> 00:20:12.025
And so treat everyone with respect, listen to their perspective,
00:20:12.365 --> 00:20:17.365
and try to use that, you know, to your benefit in whatever the next steps are.
00:20:17.865 --> 00:20:19.725
I think Jennie said it perfectly.
00:20:20.467 --> 00:20:27.967
Honestly, I think that, you know, compelling data can really demonstrate the need for policy.
00:20:28.267 --> 00:20:32.887
And as Jennie also said, because then you're able to look at the before and the
00:20:32.887 --> 00:20:37.167
after and see how effective that policy is once it is implemented.
00:20:37.507 --> 00:20:41.767
To move anything forward, it has to be bipartisan. I wouldn't even attempt to
00:20:41.767 --> 00:20:48.327
look at or consider a policy that would be partisan because chances of that
00:20:48.327 --> 00:20:50.227
moving forward are going to be harder.
00:20:50.467 --> 00:20:55.087
And regardless of their political or religious affiliations of the language
00:20:55.087 --> 00:21:00.007
they speak, where they live, is that everyone across the board deserves better.
00:21:00.227 --> 00:21:05.147
So if there's a policy that's going to improve the health and well-being of
00:21:05.147 --> 00:21:11.987
families, constituents in their state or district, that it's important.
00:21:12.743 --> 00:21:16.063
Now let's move on to some more implementation questions. So Jennie,
00:21:16.243 --> 00:21:21.163
you had discussed how you worked to implement the Autumn Joy Act.
00:21:21.363 --> 00:21:26.243
I wasn't sure if you had any sort of experience of, how do you make sure that
00:21:26.243 --> 00:21:29.043
the policy has the intended effect when it's actually implemented?
00:21:29.523 --> 00:21:33.983
Yeah, so I navigated this with our member birth facilities during implementation,
00:21:33.983 --> 00:21:39.723
and we can certainly see it in other regulation and policies as well.
00:21:39.903 --> 00:21:45.323
But specifically related to Autumn Joy, I remember one concern that hospitals
00:21:45.323 --> 00:21:48.303
had was around the staffing requirements.
00:21:48.303 --> 00:21:52.383
And so what was really, I believe, intended to be, you know,
00:21:52.483 --> 00:21:56.083
let's try to have continuity of care for these families so that they don't have
00:21:56.083 --> 00:22:02.883
to retell their stories 10 times in a shift so that the communication is clear and consistent.
00:22:03.803 --> 00:22:08.943
When the hospitals went to implementation phase, they had concerns about their
00:22:08.943 --> 00:22:14.743
staffing ratios and being able to maintain a one-to-one nurse to a family who's
00:22:14.743 --> 00:22:18.023
experienced a loss or even a provider being one-to-one.
00:22:18.203 --> 00:22:23.623
And so some of their questions and concerns were very literal and that they,
00:22:23.623 --> 00:22:28.383
you know, weren't sort of able to see the big picture of what the intentions
00:22:28.383 --> 00:22:30.223
were with the legislation.
00:22:30.343 --> 00:22:35.803
So I would say, you know, that specifically, you know, each facility is going
00:22:35.803 --> 00:22:39.443
to be different as far as their staffing and their support and their resources.
00:22:39.903 --> 00:22:44.343
But being able to work with them to see this is the intention of this.
00:22:44.463 --> 00:22:46.303
And we know that this is what's best for families.
00:22:46.543 --> 00:22:52.323
We know that this is the best that we could do for a family who's on the floor experiencing a loss.
00:22:52.603 --> 00:22:57.003
How, you know, what can you do within your unit knowing what you have in place
00:22:57.003 --> 00:23:00.563
to get this as close to being achieved as possible.
00:23:00.843 --> 00:23:05.203
I'll also add to that that having the right voices present throughout the entire
00:23:05.203 --> 00:23:08.223
process would also support that. So I
00:23:08.557 --> 00:23:13.477
You know, if you are part of a team that's drafting a regulation, a policy or a bill.
00:23:13.937 --> 00:23:19.397
You know, engaging clinical leaders or even staff nurses or providers who are
00:23:19.397 --> 00:23:21.277
close to the work that could say,
00:23:21.657 --> 00:23:25.897
you know, based off of my experience on the floor, I can tell you what's happening
00:23:25.897 --> 00:23:29.437
in real life right now and what really could be achieved.
00:23:29.437 --> 00:23:33.317
Or, you know, perhaps there is going to need to be some sort of funding attached
00:23:33.317 --> 00:23:35.037
to a certain type of proposal.
00:23:35.317 --> 00:23:40.037
But hearing right from them, I think it not only does it add really valuable
00:23:40.037 --> 00:23:43.337
contribution to the proposed idea,
00:23:43.617 --> 00:23:49.277
it also offers the opportunity for engagement and for champions to emerge as
00:23:49.277 --> 00:23:54.297
being part of this work and seeing it through, you know, in their respective regions as well.
00:23:55.000 --> 00:24:02.880
All I knew was from my experience that was the care that I received at the hospital
00:24:02.880 --> 00:24:05.880
that I delivered Automat was just really disappointing.
00:24:05.920 --> 00:24:10.080
And it just, it was so upsetting to me.
00:24:10.240 --> 00:24:14.740
And I just didn't want anyone else to have a similar experience like mine.
00:24:16.120 --> 00:24:22.820
If I knew or thought that it would be wise to go engage with others,
00:24:23.040 --> 00:24:27.640
I would have. You know, first time around, you do what you do.
00:24:27.740 --> 00:24:31.040
And it wasn't like anyone stood up and said, hey, Debbie, maybe you want to
00:24:31.040 --> 00:24:35.360
take a moment and do some due diligence on this. And so what did I know?
00:24:35.500 --> 00:24:42.120
But I have learned from my experience the value in getting, I guess,
00:24:42.280 --> 00:24:48.240
call it buy-in, engage with stakeholders on the issue.
00:24:48.240 --> 00:24:50.980
And because I do think that, you know,
00:24:51.260 --> 00:24:55.160
starting early on and throughout the process, they will have some really critical
00:24:55.160 --> 00:25:04.200
insights into how things work and how best to implement the policy or regulation
00:25:04.200 --> 00:25:06.200
that you're looking to pursue.
00:25:06.900 --> 00:25:14.700
I see that now. And I definitely have changed the way in which I view this work.
00:25:14.700 --> 00:25:20.060
And I've taken it to heart. I have definitely in different policies that I have
00:25:20.060 --> 00:25:24.000
worked on since have engaged with the stakeholders as well.
00:25:24.140 --> 00:25:28.460
And they will also help champion it along the way. They want to be part of the process.
00:25:28.660 --> 00:25:31.780
No one wants to be told what it is that they have to do. They want to feel seen.
00:25:32.420 --> 00:25:35.700
They want to feel heard. And I think working together as a team in that capacity
00:25:35.700 --> 00:25:38.340
will really prove beneficial for all.
00:25:39.354 --> 00:25:44.574
As someone who was there at the beginning of writing policy to seeing it implemented,
00:25:44.574 --> 00:25:48.974
how do you measure success of a policy that you've worked on?
00:25:49.514 --> 00:25:56.174
Well, it certainly isn't getting the policy passed. It's not, you know, one and done.
00:25:56.394 --> 00:25:59.694
There's so much more that goes into it. It's real world impact.
00:25:59.994 --> 00:26:04.034
Obviously, that's the intent that you sat down and pursued whatever initiative
00:26:04.034 --> 00:26:10.294
that you are pursuing. Are we seeing the outcomes that we want to see?
00:26:10.454 --> 00:26:13.914
Are we seeing the gaps that we were looking to address filled?
00:26:14.514 --> 00:26:18.994
And it's all, unfortunately, you know, it's all ongoing.
00:26:19.054 --> 00:26:24.334
And I think that because things change, right? And so you have to be able to.
00:26:24.915 --> 00:26:31.055
Monitor and adapt to whatever changes are happening around in your community,
00:26:31.355 --> 00:26:36.795
your state, and to really ensure that whatever those policies are remain effective.
00:26:37.275 --> 00:26:44.895
But I think the first step in change is getting the policy passed and just know
00:26:44.895 --> 00:26:47.055
that it's always going to be a part of your work.
00:26:47.175 --> 00:26:52.215
It's not something you can walk away from, but you got into this work for the
00:26:52.215 --> 00:26:53.995
reason to create change.
00:26:54.155 --> 00:26:58.455
And so you got to stick with it. And especially if you have those champions
00:26:58.455 --> 00:27:00.555
and stakeholders, they can also help you.
00:27:00.775 --> 00:27:04.795
Because as I said in the beginning, it takes a village. Having partners like
00:27:04.795 --> 00:27:07.975
Jennie, you know, really does help.
00:27:07.975 --> 00:27:12.435
I think that none of the work that we've accomplished here in New Jersey would
00:27:12.435 --> 00:27:15.975
be possible without her and the other maternal child health consortiums.
00:27:16.115 --> 00:27:22.335
And so I think choose wisely who your partners are, engage and,
00:27:22.335 --> 00:27:23.915
you transparency is key.
00:27:24.275 --> 00:27:28.775
Jennie, same question to you. How do you measure success? Success of a policy
00:27:28.775 --> 00:27:33.675
or any initiative would really be, could be evaluated in two different ways.
00:27:33.775 --> 00:27:38.095
On the one hand, we want to see, you know, an evaluation of outcomes.
00:27:38.315 --> 00:27:42.195
And we want to see, especially, you know, for those of us in the clinical work,
00:27:42.355 --> 00:27:45.335
we want it to be very objective. We want it to be measurable.
00:27:45.695 --> 00:27:49.915
We want to see rates, you know, risks going down, rates going down,
00:27:50.155 --> 00:27:51.575
you know, better outcomes increasing.
00:27:52.135 --> 00:27:55.655
And so on the one hand, we want to see really substantial, significant change
00:27:55.655 --> 00:28:00.055
that can be directly connected to whatever the initiative was.
00:28:00.215 --> 00:28:05.275
On the other hand, I have to say, as you know, I am a labor and delivery nurse at heart.
00:28:05.415 --> 00:28:12.115
And so I also feel that when we can improve the care for one family,
00:28:12.395 --> 00:28:17.415
you know, we've done our job. And we recently hosted a full-day perinatal bereavement
00:28:17.415 --> 00:28:19.015
training down in Atlantic City.
00:28:19.715 --> 00:28:24.895
And we received such tremendous feedback after that about just...
00:28:25.410 --> 00:28:30.010
How really it opens a care team's eyes to what they could be doing,
00:28:30.190 --> 00:28:31.710
what should they be offering to families.
00:28:32.010 --> 00:28:36.690
Whenever we hear positive feedback, either from care teams or directly from
00:28:36.690 --> 00:28:41.210
a family about the impact, even if it's, you know, one or two or it's anecdotal,
00:28:41.390 --> 00:28:43.350
to me, that's also success.
00:28:43.350 --> 00:28:47.210
It's knowing that we were able to connect with someone and make an impact.
00:28:47.430 --> 00:28:54.090
And so I think holding on to those long-term, bigger outcome improvements that
00:28:54.090 --> 00:28:59.690
we're waiting for, being able to reflect on, you know, the small interactions,
00:29:00.250 --> 00:29:04.750
you know, the anecdotal feedback, the opportunity to care for one family on
00:29:04.750 --> 00:29:09.750
this day, and knowing that you made a difference in this experience for them.
00:29:09.890 --> 00:29:11.950
To me, that is success as well.
00:29:12.110 --> 00:29:14.690
And sometimes it's important to keep your eye on both of them.
00:29:14.690 --> 00:29:19.050
So what can individuals who are interested in getting into policy do to get
00:29:19.050 --> 00:29:21.550
started? Debbie, I'll have you answer this one first.
00:29:22.350 --> 00:29:25.950
Before I lost Autumn, I never ever would have imagined that anything that I
00:29:25.950 --> 00:29:34.870
had to say really mattered to my elected officials. If I had a concern, would they really care?
00:29:35.070 --> 00:29:39.350
Probably not. But what I've learned, though, is that they do care.
00:29:39.350 --> 00:29:45.910
The more that they are hearing about an issue that is affecting their constituency,
00:29:45.910 --> 00:29:50.310
it really does put your issue on their radar.
00:29:50.770 --> 00:29:54.850
It's not just all talk. It really does matter.
00:29:54.850 --> 00:30:02.530
So I would really encourage anyone who wants to get involved with advocacy is to keep that in mind.
00:30:02.530 --> 00:30:05.970
You could place a call, you can write a handwritten letter, you could go to
00:30:05.970 --> 00:30:10.510
a town hall, you could send a message through their contact me website.
00:30:10.950 --> 00:30:12.470
Your messages are received.
00:30:13.293 --> 00:30:18.233
And they are read and they are listened. Not everything has to be such a heavy lift.
00:30:18.393 --> 00:30:25.733
Not every issue, not every bit of work has to be almost 15 years long. Take 15 years.
00:30:26.493 --> 00:30:31.493
You could give as much or as little as you want. I would suggest that people,
00:30:31.493 --> 00:30:37.673
they have an issue they want to get involved with, dip your toes and see how it feels.
00:30:37.813 --> 00:30:41.413
And then you can always, you know, take on more work.
00:30:42.839 --> 00:30:46.639
Advocacy is all about the numbers. There's strength in numbers.
00:30:46.879 --> 00:30:53.879
And so I think joining forces with others who have similar passions,
00:30:53.879 --> 00:30:55.579
it carries a lot of weight.
00:30:55.699 --> 00:30:59.059
And so my advice is don't shy away from it.
00:30:59.339 --> 00:31:04.379
More the merrier, for sure, in the advocacy space. And if you do find an issue
00:31:04.379 --> 00:31:07.739
that is important that you want to advocate on,
00:31:07.919 --> 00:31:10.899
you can always ask your friends and family to send messages and place calls
00:31:10.899 --> 00:31:19.559
as well, because it really, that's what's going to amplify the issue and the need for change.
00:31:19.979 --> 00:31:23.579
Yeah, I would say really start at home. Think about, you know,
00:31:23.719 --> 00:31:26.199
what is something that you're passionate about.
00:31:26.359 --> 00:31:30.839
I'm somebody who, if there's, you know, something inside of me that I'm really
00:31:30.839 --> 00:31:34.939
interested in or dedicated to, there's a fire there, you know,
00:31:35.039 --> 00:31:38.359
And I'll find, you know, where the opportunity is to get involved.
00:31:38.639 --> 00:31:41.079
So I would start there. If you're someone who thinks, you know,
00:31:41.159 --> 00:31:44.259
I think I want to kind of get involved in this. I want to explore this.
00:31:44.979 --> 00:31:48.879
Start with something that you are passionate about, you know,
00:31:48.959 --> 00:31:51.499
something that's close to home for you, whether it's in your community,
00:31:51.779 --> 00:31:53.479
perhaps a local professional organization.
00:31:54.139 --> 00:31:58.939
And if you are, you know, a member of, you know, one of my fellow registered
00:31:58.939 --> 00:32:02.159
nurses, you know, this space might feel a little foreign.
00:32:02.159 --> 00:32:07.099
I don't think that we really get exposed to a lot of the opportunities to be
00:32:07.099 --> 00:32:10.519
part of these conversations, but we truly are valued stakeholders.
00:32:10.559 --> 00:32:15.139
And I think we need to be willing to kind of step out of our traditional role
00:32:15.139 --> 00:32:19.459
at the bedside to to look for opportunities to have our voices heard.
00:32:19.599 --> 00:32:23.279
It might mean a little bit of extra time. It might be, you know,
00:32:23.379 --> 00:32:26.439
on the weekend or in the evening. So being flexible with that.
00:32:26.559 --> 00:32:30.159
But I would really just start with something that lights a fire under you that
00:32:30.159 --> 00:32:33.379
you are super passionate about. and go from there.
00:32:34.143 --> 00:32:40.823
Over, you know, I've spoken with thousands of lost families over my 15 years of this work.
00:32:41.223 --> 00:32:47.243
And the number of times that I've been thanked for letting, you know,
00:32:47.643 --> 00:32:51.123
letting families know that they can be doing this work.
00:32:51.183 --> 00:32:55.983
I think a lot of it comes down to is that individuals don't know that that advocacy
00:32:55.983 --> 00:32:57.463
is something that they can do.
00:32:57.783 --> 00:33:03.163
Right. And to Jennie's point, I think that it's a passion or or it could not be a passion.
00:33:03.163 --> 00:33:09.283
And for example, we have some traffic issues in my town around my house and
00:33:09.283 --> 00:33:14.783
I heard there was going to be a town hall meeting and I actually went to the meeting,
00:33:14.963 --> 00:33:19.263
wasn't really sure what, how it turned out, but it turned out really well.
00:33:19.263 --> 00:33:21.103
They listen to what I had to say.
00:33:21.423 --> 00:33:24.663
I have a meeting that's coming up, you know, with the mayor.
00:33:24.963 --> 00:33:32.763
And I think that as long as it's something that either will improve your quality
00:33:32.763 --> 00:33:36.403
of life or your family member's quality of life, do it.
00:33:36.403 --> 00:33:42.903
But just know that it really does mean something. It really, really, really does.
00:33:43.103 --> 00:33:49.343
And so I would encourage everyone to find a way to get involved in something
00:33:49.343 --> 00:33:51.463
at whatever level they want to.
00:33:51.703 --> 00:33:54.263
But everyone's voice matters and it's needed.
00:33:55.603 --> 00:34:02.283
And then to end on a positive note, what is something that you both are working
00:34:02.283 --> 00:34:05.683
on or seeing right now that is making you hopeful in this new year?
00:34:06.353 --> 00:34:09.773
I'm currently a fellow of the Women's Political Caucus of New Jersey,
00:34:09.773 --> 00:34:16.593
and I'm really grateful to learn alongside 14 of my peers from throughout the state.
00:34:16.593 --> 00:34:21.833
We all have different backgrounds and experiences, and many of my colleagues
00:34:21.833 --> 00:34:27.373
are really working closer to Trenton and supporting the legislative process more than I am.
00:34:27.513 --> 00:34:31.553
But we're really just all passionate about having our voices heard,
00:34:31.853 --> 00:34:35.713
learning more about how we can get involved. And for me, it's just exciting
00:34:35.713 --> 00:34:39.613
to see folks value the voice of a nurse in these conversations.
00:34:39.993 --> 00:34:43.933
I've already about halfway through and I've already had the privilege to meet
00:34:43.933 --> 00:34:48.173
some really incredible people who have done really significant work in New Jersey.
00:34:48.173 --> 00:34:55.133
And so this is a part of my role that I haven't gotten to explore before,
00:34:55.133 --> 00:34:59.213
but I'm really excited about it and looking forward to the future and how this
00:34:59.213 --> 00:35:04.873
will help me have more influence on the type of policies and regulations that are developed,
00:35:05.073 --> 00:35:08.733
again, that impact the role of the registered nurse as well as the families that we serve.
00:35:08.733 --> 00:35:13.533
What I am most hopeful about is, I'll just give some background.
00:35:13.853 --> 00:35:19.913
So the Shine for Autumn Act's original house sponsors were appropriators.
00:35:20.193 --> 00:35:27.513
And after Shine was introduced, they also ensured that there was a funding set
00:35:27.513 --> 00:35:32.373
aside to establish a stillbirth working group, which would basically examine
00:35:32.373 --> 00:35:34.273
the barriers to data collection.
00:35:34.713 --> 00:35:37.193
Risk factors, research.
00:35:37.193 --> 00:35:42.493
And the psychological impact of stillbirth on families.
00:35:42.953 --> 00:35:49.373
And so I've been also submitting appropriations requests every year for this
00:35:49.373 --> 00:35:52.033
funding since they left Congress.
00:35:52.033 --> 00:35:59.553
Again, no prior experience knowledge of what I'm doing, but I have been doing it since 2023.
00:36:00.573 --> 00:36:04.293
And in one of the toughest budget years.
00:36:05.498 --> 00:36:08.978
We received an increase of $250,000 to
00:36:08.978 --> 00:36:12.958
carry out the implementation of the recommendations of the working group.
00:36:13.098 --> 00:36:17.318
And so I'm excited because it is such a win.
00:36:17.718 --> 00:36:25.278
I feel that members of Congress really are able to recognize the need to address this issue.
00:36:25.478 --> 00:36:30.198
They want to be part of the solution to this problem. And it makes me really
00:36:30.198 --> 00:36:34.658
proud because all I've really ever wanted is for people to care.
00:36:34.658 --> 00:36:40.978
And I feel that having congressional champions behind this issue,
00:36:41.298 --> 00:36:46.838
fighting for an increase in funding, gives me a tremendous amount of hope for the future.
00:36:46.958 --> 00:36:56.318
And I just hope that it can help us to usher shine across the finish line in 2026. 26.
00:36:56.798 --> 00:37:00.418
But, you know, it says a lot. It says a lot.
00:37:00.438 --> 00:37:06.818
And I want to believe that it's a sign, a good sign for better things to come.
00:37:07.785 --> 00:37:13.025
Well, I think that's a perfect note to end on. We had a great conversation today.
00:37:13.205 --> 00:37:16.845
We've covered a lot from how people with lived experience can really be the
00:37:16.845 --> 00:37:21.865
driving force of new legislation or to be that final push to get it across the finish line.
00:37:22.025 --> 00:37:26.365
The importance of continuing to push and work for positive policy while maintaining
00:37:26.365 --> 00:37:29.425
patience and celebrating those small wins along the way.
00:37:29.685 --> 00:37:33.025
We've talked about the importance of finding common ground and using data to
00:37:33.025 --> 00:37:35.045
show the effectiveness of proposed policy.
00:37:35.045 --> 00:37:39.225
How successful implementation requires conversation and buy-in with stakeholders,
00:37:39.845 --> 00:37:42.805
and that passing a policy is not the only measure of success,
00:37:42.965 --> 00:37:48.945
but rather seeing those real-world positive outcomes and the constant evaluation of measuring success.
00:37:49.585 --> 00:37:54.405
We were reminded from both of our guests to not shy away from advocacy and policy
00:37:54.405 --> 00:37:56.485
and that your voice and passion matter.
00:37:56.825 --> 00:38:00.725
Community is a huge resource in advocacy and policy, and whether you're finding
00:38:00.725 --> 00:38:03.425
it at home or with others who are interested in the same topic,
00:38:03.605 --> 00:38:05.665
there is a community out there for you.
00:38:06.025 --> 00:38:10.925
And on our final hopeful note, people are working to make the world a better
00:38:10.925 --> 00:38:15.005
place and are continuing to push for things that will make a difference in people's lives.
00:38:15.285 --> 00:38:19.705
Thank you both for being on All Teach, All Listen. I hope those who are listening
00:38:19.705 --> 00:38:21.125
enjoyed the conversation today.
00:38:21.365 --> 00:38:24.785
If you want to dive deeper into this and other critical public health topics,
00:38:24.945 --> 00:38:27.845
make sure to join us on our Echo series where you can learn from subject matter
00:38:27.845 --> 00:38:32.145
experts and people with lived experience and connect with those from a wide
00:38:32.145 --> 00:38:34.125
variety of backgrounds who care about the same issues.
00:38:34.925 --> 00:38:39.705
You can keep up with the Shine for Autumn Act at shineforautumnact.org.
00:38:39.825 --> 00:38:43.805
You can also learn more about the cooperative, South Jersey's most trusted source
00:38:43.805 --> 00:38:47.425
for maternal and infant health and community wellness at thecooperative.org.
00:38:47.645 --> 00:38:51.525
A full list of resources and items discussed today can be found in a document
00:38:51.525 --> 00:38:53.165
within the description of this episode.
00:38:53.365 --> 00:38:55.665
Thank you again to our guests and thank you for listening.