#315 - Why Preterm Birth History Matters for Life: A Conversation with Michelle Kelly

Hello friends 👋

In this week’s Journal Club, Ben and Daphna sit down with Michelle Kelly, Pediatric Nurse Practitioner and Associate Professor at Villanova University. Michelle is a leading voice in recognizing the lasting impact of preterm birth on long-term health. She shares insights from her co-authored article, Addressing Preterm Birth History with Clinical Practice Recommendations Across the Life Course, which outlines how a history of prematurity should inform lifelong clinical care.

The conversation highlights the gap between neonatal and adult healthcare systems, and why identifying preterm birth history should be a routine part of medical assessments. Michelle also discusses practical strategies to educate families, empower survivors of prematurity, and shift provider assumptions about long-term outcomes. This episode offers a thoughtful and grounded discussion on turning early-life health factors into actionable care across the lifespan.

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Short Bio : Michelle Kelly is a Pediatric Nurse Practitioner and an Associate Professor at Villanova University’s M. Louise Fitzpatrick College of Nursing. She also serves as Co-Director of the Mid-Atlantic Center for Children’s Health and the Environment. Her background is deeply rooted in neonatal intensive care, and she is well known for championing the recognition of preterm birth history as a key factor in managing patients with chronic conditions. She co-authored the article “Addressing Preterm Birth History With Clinical Practice Recommendations Across the Life Course,” which highlights the importance of integrating a patient’s preterm status into ongoing health assessments. Recognized as an advocate, educator, and leader in the field, she is dedicated to improving healthcare outcomes and bringing attention to the lifelong impacts of premature birth.

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The articles covered on today’s episode of the podcast can be found here 👇

Long-Term Healthcare Outcomes of Preterm Birth: An Executive Summary of a Conference Sponsored by the National Institutes of Health.

Raju TNK, Pemberton VL, Saigal S, Blaisdell CJ, Moxey-Mims M, Buist S; Adults Born Preterm Conference Speakers and Discussants.J Pediatr. 2017 Feb;181:309-318.e1. doi: 10.1016/j.jpeds.2016.10.015. Epub 2016 Oct 31.PMID: 27806833 No abstract available.

Addressing Preterm Birth History With Clinical Practice Recommendations Across the Life Course.

Kelly MM, Tobias J, Griffith PB.J Pediatr Health Care. 2021 May-Jun;35(3):e5-e20. doi: 10.1016/j.pedhc.2020.12.008. Epub 2021 Feb 23.PMID: 33637388 Review.

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The transcript of today's episode can be found below 👇

Ben Courchia, MD:Hello, everybody. Welcome back to the Incubator Podcast. We're back this Sunday with a special interview. Daphna and I are joined in the studio today by Michelle Kelly. Michelle, welcome to the podcast.

Michelle Kelly:Thanks for having me. I'm excited to be here.

Ben Courchia, MD:I'm very excited to have you. Daphna, how are you this morning?

Daphna Yasova Barbeau, MD:I'm doing well! I think we've got a great chat coming up.

Ben Courchia, MD:That's right. Michelle, you're a nurse practitioner, an associate professor at Villanova University’s M. Louise Fitzpatrick College of Nursing, and co-director of the Mid-Atlantic Center for Children's Health and the Environment. You have extensive NICU experience. You are known for your advocacy around recognizing preterm birth history as a critical factor in managing chronic conditions. You co-authored the article Addressing Preterm Birth History with Clinical Practice Recommendations Across the Lifecourse. It highlights how identifying a patient's preterm status can improve lifelong health outcomes. My first question is this: in the article, you wrote that "preterm birth is often overlooked in clinical practice, leading to missed opportunities for timely intervention." Can you expand on the scope of this issue, and why it's critical to recognize preterm birth history from infancy through adulthood?

Michelle Kelly:First, thank you for giving me the opportunity to talk about this. It’s one of my favorite topics. As a pediatric nurse practitioner who then became a neonatal nurse practitioner, I’ve walked in both worlds. I started in primary care, fell in love with the NICU, and realized that those two groups—pediatrics and neonatology—don’t talk to each other well. We don’t fully understand what happens in both environments. My research started from that gap, and it gave me this unique perspective. What I’ve seen is that we stop talking about prematurity as part of someone’s health history around age four. When I trained as a nurse practitioner, we were all taught that preemies “catch up,” and the ones who don’t are obvious—and the rest, you don’t need to worry about. That’s a myth we’ve now debunked over the last 20–30 years. People who are born early carry that early start with them throughout life. All body systems are affected—kidneys, lungs, even mental health and their ability to take in their environment. And I always focus on risk, not guarantees. Being born preterm increases the risk for things like hypertension or restrictive lung disease. If adult providers in internal medicine or pulmonology or cardiology don’t know their patient was born early, they’re missing an important factor in risk-based decision-making.

Ben Courchia, MD:Yeah, I found that really striking in your paper. You offer a thorough review of school-aged outcomes. There’s a wealth of data—14 meta-analyses, eight systematic reviews. There’s this syndrome that I call “first to arrive” – like, am I really the first person to pick up on this? While there’s no specific phenotype of the individual born preterm, they do experience chronic conditions but there are no formal guidelines for adult physicians. Why don’t adult healthcare providers have guidance about how to care for people born preterm?

Michelle Kelly:That was a real "aha" moment for me. There actually is an NIH executive summary from 2016 led by Tansi Raju and co-authored by 60 professionals. Those 60 people, me, and maybe a handful of other people are the only people who know it exists. Part of the problem is that much of the long-term data isn’t U.S.-based. That makes it harder to translate findings to our patient population. And here in the U.S., we lack the ability to data mine and track preterm birth in electronic health records, because we stop using the ICD-10 code after toddlerhood. Unless a woman is pregnant or planning pregnancy, no one is asking if she was born preterm. A 16-year-old, a 26-year-old—they’re just not being asked. We don’t have large birth cohorts. The data we do have, like the National Survey of Children’s Health, is cross-sectional—not longitudinal. So while we can get a snapshot, we can’t follow individuals over time. That makes it hard to conduct robust, long-term analysis here in the U.S.

Ben Courchia, MD:Right. And the article you referenced is published in Journal of Pediatrics and is titled Long-Term Healthcare Outcomes of Preterm Birth: An Executive Summary of a Conference Sponsored by the NIH. It's a major reference point in your paper.

Daphna Yasova Barbeau, MD:Before we dive into the recommendations, I want to set the stage for our audience, many of whom are neonatal healthcare professionals. Some might wonder, “Why should this matter to me? I work in the NICU.” But you bring such a unique perspective, because you’ve worked out in the community and now, you’re back in the NICU. How has that changed how you approach families preparing for discharge? What can we do differently or better?

Michelle Kelly:That’s such a good question. It’s really about setting expectations. During a resuscitation, doing chest tube, deciding whether or not to put a baby on the oscillator – these are not the times to talk about long-term outcomes. But when a baby is stable, parents are rooming in, and discharge is approaching—that’s the time. Even in developmental follow-up clinics, if you're lucky enough to have them, it’s about educating families that prematurity is part of their child’s lifelong story. There is still risk. Adults born preterm often do try to advocate for themselves—like saying, “Hey, could my hypertension be because I have less nephrons because I was born at 27 weeks?”—but they’re often dismissed by their providers.

So part of our job is to empower families and to empower their survivors. Teach them to say, “This matters. Here’s why.” I always say, the way we got people to wear seatbelts was by teaching kids it was important. Kids are an agent for change. Same thing here: empower preterm birth survivors themselves. If neonatologists and neonatal nurse practitioners and follow-up providers are setting the stage and saying, “Your son/daughter is doing great. We're so happy with their progress. The things I want you to look out for as they get older are…” Setting that stage is really important to maximize potential. When I wear my environmental health hat, we talk about how elevated blood lead levels are dangerous for everybody. There's no safe lead level. The parent of a child that was born early has more reason to be diligent about making sure that their child gets the proper lead screening, making sure that their environment is safe from pollutants, and keeping away things that could potentiate the risk. Let's keep them as healthy as we can.

Ben Courchia, MD:

One of the words that I think struck me when I was reading the article is really, and one that comes up here and there is the word “assumption,” where at some point you mentioned: “health care providers caring for an individual born preterm should not assume that preterm birth concerns are left in the NICU or resolve at two years of age. Assumptions that individuals born preterm had the benefit of neonatal follow-up or even coordinated primary care on the basis of preterm birth status should not be made.” I think that we make a lot of assumptions, like, that will get taken care of. But that really, I think, is the pitfall of everything, considering the lifelong course of infants born prematurely. Can you tell us a little bit about how do you change the culture of not assuming, and taking action?

Michelle Kelly:

Education. Whether it's our residents, nurse practitioner students, undergraduate nursing students, our physical therapists, our occupational therapists – we need to change the education that they receive so that they are aware of risk, and we do a little myth busting early, It's also important that we're empowering parents. When we think about how a child goes through life, we're thinking about where they spend time in school, where they spend time at home, and who are the healthcare providers that influence their lives. When we talk about some of those neurodevelopmental outcomes, school performances, primary care assumes that education is handling it. Education assumes that primary care is handling it. Parent gets left holding the bag. So breaking that assumption as well is important. In the average US classroom, there are four kids born preterm in every classroom. The teachers don't know who they are. It's not a part of average intake forms to say whether or not a child was born early for schools. Schools don't know, can't use that as a in a risk assessment to decide, who should we look at in terms of needing OT, PT, or speech? They actually will wait until a child declares themselves as needing support. It's not hard to be a three-year-old. It's not so hard to be a four-year-old, but second grade math is hard. Borrowing and carrying is a hard concept for kids. So as the academic bar gets higher, kids that are born early that may have risks of executive function and visual spatial learning and things like that, they have the risk to struggle. But a teacher in focus groups that I've done with teachers, they'll say, “he dropped one math level, but we assumed it was just a fluke. we didn't do anything about it until he dropped the second math level.” Teachers share stories about waiting to intervene. But if they knew that there was another risk factor, something that they could add to their risk assessment, that being that the child was born at 28 weeks or 32 weeks, they might change when their intervention point. When I talk to families, I talk about the 100 words project. when you have an elementary school kid, the teacher will say to you in a million words or less, tell me what I need to know about your kid. Like it's sort of a tongue in cheek, but elementary school teachers tend to do it. I always encourage parents to share that information. “My child is doing great, they’ve has met all of their milestones, but you should know that they were born at 30 weeks and might have some risks. If you notice that he's struggling in anything, please let me know.” This is important that it is not from a position of vulnerability, but from a position of proactive intervention.

Daphna Yasova Barbeau, MD:I think what you said about setting expectations is so true. After the acute and subacute phase, people want to relax and not overwhelm families. But during those “feeder/grower” weeks, we have an incredible opportunity when we have access to them in a way that no other health care team will. Parents are a captive audience. You put that so beautifully – they trust us. Could we be doing more proactive parent education during that stable NICU period, before the onslaught of discharge teaching?

Michelle Kelly:Absolutely. And I would say NICU professionals aren’t just trusted—they're revered. Families see you as the reason their baby is alive and thriving. That gives you a powerful platform to shape long-term care expectations. Most NICU graduates don’t automatically get connected with Early Intervention or developmental follow-up, unless they live near a tertiary care center. So even something as simple as a checklist—a wallet card, a laminated insert in the baby book—can go a long way. A list of developmental and health milestones, things to pay attention to with neurodevelopmental outcomes, respiratory outcomes, and then that list of things to think about as your child gets older. “Please make sure you continue to share this message. Please make sure you continue to let people know that your child was born early.” In one of the iterations of my life, I actually worked in a CICU, and we used to send parents home with a picture of the anatomy that we had recreated, since their cardiac plumbing was not exactly what it was in the textbook. We would send them home with pictures of what pencil drawings of what their child's anatomy looked like. It's that same piece. We need to give them the pieces that they may not need now, but they might need in the future.

Ben Courchia, MD:Do you think we’ll get to a point where neonatal teams give families a concrete roadmap—like, “Make sure your pediatrician checks blood pressure yearly, screens for metabolic disease, or does PFTs if there’s a history of CLD”? So that things don’t fall through the cracks?

Michelle Kelly:That’s absolutely the goal. I recently spoke at the Chronic Lung Disease Conference in Philadelphia, and we’re starting to collaborate on plans specifically for adult care of CLD survivors.

My guidelines in the article are high-level, so they don’t yet include the granular details, even though they’re the most extensive we’ve got. But I didn’t exactly say often to run PFTs or check kidney function. We need more research, more collaboration with adult providers to get there. But my dream is that families go home with real, actionable surveillance plans.

Ben Courchia, MD:Yeah, although I’d argue we don’t need more research to justify all of this. Like, just check the blood pressure—it’s easy and non-invasive. What’s the harm?

Michelle Kelly:I completely agree! Checking blood pressure should be standard. The minute you recommend more invasive or costly interventions—like PFTs every other year—that’s when you need stronger data to justify it.

Ben Courchia, MD:Right. There’s a resource consideration there. But basic screenings like BP? Low-hanging fruit.

Michelle Kelly:

We also need to decide what we do with the value that's abnormal. So blood pressure is a great example. American Academy of Pediatric Guidelines say blood pressure should be done every year. Dyslipidemia screening should be done between nine and 12 years. Most people write the script for dyslipidemia screening, then it gets dropped into mom's purse, they come back the next year and it still hasn't been done. So following through and making sure those screenings actually happen is important. The 16-year-old female who was also born at 30 weeks and is a little overweight and hypertensive on the first screening, we need to not wait six months or a year before we recheck her blood pressure. We need to bring her back in a month. We need to talk about lifestyle management. We need to talk about the three things that they can do that are doable. Practical guidelines like, okay, mom, you know what? Everybody's gonna park three rows back instead of right next to the door when you go shopping. How do we get some more safe increased activity into someone's life? How do we talk about changing what they eat? All of those healthy lifestyle things that are even more important when we're talking about someone who was born early.

Ben Courchia, MD:And I think there's a huge opportunity for a more equitable way of practicing medicine. We were talking with Dr. Klaus Rabi at Hot Topics, and he mentioned that he'll find patients with symptoms of COPD, but without a significant history of smoking. He said, “My next question is usually, were you born preterm?” When it comes to metabolic disease, it's such a recipe for disaster. You might see symptoms of metabolic disturbance. Then you might say, “Walk me through the diet,” and if you don’t get the history you’re expecting, you may assume they're not telling the truth—that they're having Slurpees at the gas station. But in reality, if we looked into prematurity, we might find other causes. Someone without a dramatically unhealthy diet might still have metabolic symptoms because of their birth history. And that could unlock possibilities. Otherwise, it could lead to worse inequities—racism, bias—whatever we want to associate with that. I think it's a huge opportunity. I don’t know if I had a question there, but it resonated with the Hot Topics discussion.

Daphna Yasova Barbeau, MD:I hope you can shed some light from your experience on the outpatient side. Many neonatal professionals haven’t been on that side and assume things will get done there. We’re at a critical point in medicine, especially in the U.S., where pediatricians just don’t have the time they used to to address all these concerns. They’re under tremendous pressure—different from what we face in the NICU—especially time constraints. They might have just 30 minutes, if they’re lucky. That turns into defensive medicine. If we had addressed some of this in the NICU, we could have prevented later concerns by talking about simple lifestyle changes. To Ben’s point, the talk we discussed mentioned that smoking should not be allowed in the home of a former preemie—full stop. That should happen at discharge. We're missing some of those opportunities. We want to get into the recommendations, but what are some of those other major, “hard stop” opportunities we shouldn’t miss—even simple ways to include them in discharge teaching?

Michelle Kelly:I think NICUs are doing a better job than when I was practicing. But we need to talk about good calories versus just calories. We should be setting families up for healthy weight gain, not just weight gain at all costs. Families hear from us that growth is lung growth—we need babies to get bigger. But that sometimes translates to “just grow at any cost” in the outpatient setting. A family who may not be able to make financial choices is looking for any calories, not necessarily healthy ones—through no fault of their own. If we’re better at explaining why growth should be with protein and good calories, not just sugar or glucose, that can help.

Smoking in all its forms—including vaping—needs to be addressed. We have an entire generation who doesn’t equate vaping with smoking. But it is. A preemie lung absolutely does not need superheated chemicals from vaping. Parents should leave understanding: my child can never vape. They can’t be around people who vape or use tobacco.

And we also need to address mental and behavioral health. Parents need to understand the risk factors for social and behavioral concerns—especially in today’s world where those issues are rising. People born early are at increased risk. We need to equip families with strategies to support their kids.

Ben Courchia, MD:Absolutely. I think your paper lays this out clearly. Data shows that a preterm birth history increases risk for:

1. Impaired school performance—math, spelling, reading, receptive language, executive function

2. Behavioral and mental health concerns

3. Cardiovascular disease

4. Pulmonary disease

5. Motor delays and visual-motor coordination issues

This paper is centered around a big table outlining recommendations for preterm birth history. What I found impressive was that you submitted these recommendations to clinicians and received overwhelming agreement—over 95% for most of them. Were you surprised by that?

Michelle Kelly:I was definitely worried about feasibility. Some recommendations seem like common sense, but given how little time providers have in primary care, I was concerned I might be suggesting one more thing to add to their plates. But there wasn’t a lot of pushback, except for metabolic syndrome things.

Ben Courchia, MD:Even then, 83% agreement on monitoring total body fat mass annually, and 95% feasibility. Screening fasting glucose, serum insulin, and lipid profile screening had 78% agreement, 95% feasibility. Still strong numbers. For most studies, 83% agreement would be excellent.

Some of the recommendations are so simple, they should be part of every pediatric training packet. Like emphasizing the importance of all vaccinations—including the flu shot—for former preemies. Or the role of families in speech and language development, especially when access to therapists is limited. And anticipatory guidance on avoiding smoking, secondhand smoke, air pollution, and environmental toxins—all had 100% agreement and feasibility.

Were there recommendations that didn’t make the final list or that you hope to add later?

Michelle Kelly:I would add COVID and RSV vaccines. We’re in a different stage now than when we wrote this, but I would include all vaccines.

Ben Courchia, MD:That’s a great point. The paper was published online in February 2021, so things have evolved since then.

Daphna Yasova Barbeau, MD:Specifically with vaccines, we’re seeing a huge rise in hesitancy. It’s harder now to get the same levels of adherence we used to. Parents leaving the NICU were once eager to do anything to protect their baby. I don’t think that’s as common anymore. We have to start addressing this early, not as an afterthought. Parents need to understand their child’s unique risk, not necessarily as a vulnerability, but as something that can be strengthened in their baby.

Michelle Kelly:Exactly. Play to your strengths. We've all worked so hard to get these babies to this stage—now let’s keep them healthy. Developmental stages can’t be skipped. Each step builds on the next. For example, language. I’ve raised three kids myself. When you're in a doctoral program, with two-year-olds and 24-hour shifts, reading a bedtime story is nearly impossible. So we did our reading at other times. I tell parents story time doesn’t have to be at bedtime. You can read while waiting in the pickup line, on the bus—just talk to your kids. That’s language exposure and modeling. If you can’t show them a book, tell a story. Put the screens down and talk to each other. That’s how kids develop language. We need creative alternatives to the rigid standards of Dr. Spock.

Ben Courchia, MD:I want to refer listeners to the list of recommendations in the article. You did a great job codifying them by level of evidence—A through D. Level A includes meta-analyses, Level B includes controlled studies, Level C includes systematic and integrative reviews were published, Level D is that there's peer review standards. The strength of these recommendations is that they’re straightforward, actionable, and easy to implement.

Important highlights include recognizing preterm birth as a lifelong risk factor for pulmonary, cardiovascular, metabolic, and mental health conditions. Every adult healthcare provider should ask about preterm history and include it in care plans. It should be on every new patient form, right alongside asthma and allergies. That ultimately is the goal.

Michelle Kelly:Yes! If anyone has an in with Epic or Cerner, I’d love to make that a default field.

Ben Courchia, MD:Exactly—make it a hard stop, like allergies. That would play a huge role.

Michelle Kelly:And it’s not just about gestational age—it’s about both gestational age and birth weight. Both need to be documented. So what’s the pushback? Current U.S. law prevents pre-existing conditions from affecting insurance access, but if that ever changes, there could be concerns about documenting early birth. But it’s still important. Just like we document family history of heart disease or cancer. We can’t change that someone was born early, but we need to factor it into our decision-making.

Ben Courchia, MD:For our listeners in training or early in their careers, this feels like a great opportunity for scholarly activity. Seems that this is an area of research that is very active. There are a lot of opportunities. I think if you are a young career physician—or even mid-career or senior physician—and interested in this topic, there are definitely ways to get involved.

Michelle Kelly:And I’m happy to help anybody do it because I am solidly in the mid and pushing to the other side.

Ben Courchia, MD:On the back nine!

Daphna Yasova Barbeau, MD:You’re looking to pass the baton, is that what you were saying?

Michelle Kelly:I’ve got a few more years in me yet, but we need people who are willing and who understand the importance of this. I do believe that that’s going to be the younger generation, right? So I’m working through that.

Daphna Yasova Barbeau, MD:I think it’s very exciting. I really hope people get the message—this could be career-defining, taking this on. Especially two parts: taking it on in the NICU and then collaborating with our pediatric, adolescent, and adult medicine colleagues.

One question that’s a little different from what we’ve been focusing on—in addition to all the tremendous work you do clinically, you actually collaborate a lot on pieces for the lay public. I wanted to highlight that because, in general, sometimes healthcare professionals—physicians especially—are really afraid of doing that. I hope you can share a little bit about how you got into doing that, and why you think it’s so important.

Michelle Kelly:So part of that is being a nurse. Nurses are taught to translate medicine to patients. Sometimes our physician colleagues are great at that, and sometimes they are not. That’s when a good nurse steps in. So part of it is just the world I’ve always lived in—that translation piece.

The other piece is that a woman named Lauren Ingledow—an adult who was born preterm and one of the founders of the Adult Preemie Advocacy Network (APAN) —emailed me randomly four years ago and said, “Hey, I found your article. Can we talk?” I said, “Yes.” We’ve been working on blogs and translation pieces for adults who were born preterm for the last four years. We speak together—I do the healthcare side, she does the lived experience side. We talk about what it’s like to live as an adult born preterm.

A lot of neonatal research focuses on parents because parents are your consumers, right? The babies are your patients, but parents are your consumers. While I applaud that as a valuable part of the literature, the adult who was born preterm has to be the next focus of our research because their lived experience is really valuable. It tells us where to focus healthcare.

That’s been a big piece—translating to the public and making sure people are aware. Families don’t read medical journals. We have to get the information to who needs to see it: the lay population.

Daphna Yasova Barbeau, MD:I think that’s so important to your point—especially when we say we want patients to advocate for themselves. But how do they know how to do that if we’re not going out into the lay sphere through the popular press or social media and informing them? So thank you for your advocacy in that arena. I want to highlight that we had a great early interview with Juliette Lee, who is part of the same APAN organization. That is in episode 12 of our Incubator library for people who want to hear her firsthand.

Michelle Kelly:Yeah, Juliette and Lauren have done amazing things. There’s a website, there’s a Facebook page for adults born preterm, and there’s an advocacy side as well. They’ve done pretty amazing work in the UK and have a developing presence here in the U.S.

Ben Courchia, MD:Michelle, thank you so much for making time to chat with us and congratulations again on this robust work. The title of the article we’ve been discussing is Addressing Preterm Birth History with Clinical Practice Recommendations Across the Life Course. We’ll link the article in the show notes along with ways to reach out to Michelle. Thank you so much, and good luck with the rest of your work.

Michelle Kelly:Thank you.