#339 - The Giants of Neonatology: Dr. Edward Bell on Culture, Consistency, and Care at the Limits of Life

Hello friends 👋

Picture this: You’re caring for a 22-week infant, uncertain whether survival is even possible—and yet you remember that someone like Dr. Ed Bell has been quietly tracking cases just like this for decades.

In this episode of The Incubator Podcast, we welcome Dr. Edward Bell, Professor of Pediatrics and Associate Vice Chair for Faculty Development in Neonatology at the University of Iowa. A leader in the care of extremely preterm infants, Dr. Bell shares the origins of the Tiniest Babies Registry, his views on how viability has shifted over the decades, and why institutional culture—not just technical capability—makes all the difference in outcomes for the smallest patients.

We talk through the evolution of care for infants born at the edge of viability, what defines success at 21–22 weeks, the growing segmentation of neonatology into subspecialties, and how consistency in care delivery plays a vital role. The episode closes with practical advice for young neonatologists entering the field today.

A grounded, no-nonsense conversation with someone who has shaped—and continues to influence—the trajectory of neonatal medicine.

Listen on Apple, Spotify, or wherever you get your podcasts.

Link to episode on youtube: https://youtu.be/0xpeBoMrjK4

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Short Bio: Dr. Edward F. Bell is a Professor of Pediatrics and Associate Vice Chair for Faculty Development in Neonatology at the University of Iowa. For over 40 years, he has been a trailblazer in the care and research of extremely preterm and critically ill newborns. Among his many contributions is the creation of the Tiniest Babies Registry, a groundbreaking initiative launched in 2000 to track infants born weighing less than 400 grams.

Dr. Bell has led pivotal clinical trials on transfusion practices, patent ductus arteriosus (PDA) management, and neurodevelopmental outcomes. His work has earned him numerous prestigious honors, including the AAMC’s Humanism in Medicine Award and multiple mentoring awards that recognize his exceptional commitment to both patient care and the training of future neonatologists.

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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 are back today for a very special interview in our series, The Giants of Neonatology. Joining us today is Professor Edward Bell. Dr. Bell is a professor of pediatrics and associate vice chair for faculty development in neonatology at the University of Iowa. For over four decades, Dr. Bell has pioneered research and care for extremely preterm and critically ill newborns, bringing innovations like the Tiniest Baby Registry—a groundbreaking initiative he launched in 2000 to track infants born under 400 grams. He has led major trials on transfusion practices, PDA management, and neurodevelopmental outcomes, and has earned prestigious honors and awards, from the AAMC’s Humanism in Medicine Award to multiple mentoring awards recognizing his dedication to both patients and the next generation of neonatologists.

It’s an honor to welcome a true leader and giant in neonatal care and medical education to the Incubator podcast. Dr. Bell, welcome to the show.

Ed Bell: Thank you, Ben. I’m delighted and honored to be on your podcast. I’m not sure I belong in the Giants of Neonatology series.

Ben Courchia, MD: You surely belong—I can already tell you that. My first question is one we’ve asked other members of your category, the giants of the field. You’ve shaped neonatology in remarkable ways, from landmark trials to mentoring generations of physicians. What first inspired you to choose neonatology?

Ed Bell: Well, my first choice was pediatrics. But immediately, on my first neonatology rotation during residency, I fell in love with it. I loved the delivery room experience—being present at the time of birth is such a privilege and such an impactful moment. Sometimes nothing is required, and you just observe the wonder of birth. Other times, you resuscitate a baby who is limp and pale and watch them awaken and become alive. That’s such a wonderful feeling.

In the NICU itself, I enjoyed the differences compared to a pediatric clinic. I liked the procedures, the contact with parents—everything about it. Very early on, I knew it was the path for me.

Ben Courchia, MD: I had an ER attending who told me that in the emergency room, we usually see patients on the worst day of their lives. But in the delivery room, we’re often present for one of the best days of people’s lives—the birth of a child. It’s a unique experience as a physician to be there in such a joyful and meaningful moment.

Ed Bell: Yes, but for those who are quite ill or premature, helping them through those first difficult days creates a bond that’s truly unique.

Ben Courchia, MD: You’re world-renowned for your approach to caring for babies on the limits of viability. I read that you once said each time a smaller baby survived, you thought we must be reaching the lower limit, but we never quite get there. Do you think we can continue pushing the limits of viability endlessly, or are we nearing a biological threshold—especially now that we’re seeing more 22-week babies?

Ed Bell: I’ve thought we were approaching the threshold for 45 years. Throughout my career, the limit of viability has dropped about one week every decade. Each time, we thought that was the limit, and yet it continues to move. Now at 22 weeks, I don’t know how much lower we can go. But we’re already treating some 21-week babies with some success. For example, we have a baby approaching his first birthday who was born at 21 weeks and zero days. That’s halfway through a pregnancy – it’s almost unfathomable. When I started in neonatology, we felt lucky to save a 28-week baby.

Ben Courchia, MD: And now a 28-weeker almost feels like a full-term baby in today’s NICU!

Ed Bell: Exactly. I was even quoted in The New York Times 20 years ago saying 24 weeks had to be the absolute limit because the physical distance between the capillary and the alveolus was too great, and that wouldn’t allow gas exchange. Yet, with antenatal steroids, we’ve moved past that. Of course, viability isn’t just about gestational age. Babies of the same age vary along a bell-shaped curve. Some 22-weekers are viable, others are not. But progress has been remarkable. In 2014, only 26% of 22-week babies in the Vermont Oxford Network were resuscitated. By 2022, that number had risen to 74%, and 35% of those survived. I think outcomes are even better now. We’ve had these same philosophical discussions at every point we’ve moved earlier, but the babies continue to be vigorous.

Ben Courchia, MD: That’s fascinating. You mentioned the importance of recognizing which babies may do better, as there is a bell-curve at every age. Do you have a way of identifying which 22-weekers are most likely to survive?

Ed Bell: Yes. John Tyson’s estimator, updated by Matt Rysavy and published in JAMA Pediatrics, is available online on the NICHD website. You can input gestational age, predicted birth weight, gender, steroid exposure, and singleton versus multiple gestation. It gives survival chances and estimates of major morbidity. If you’re in the Vermont Oxford Network, their Nightingale tool even gives center-specific predictors, which is crucial since outcomes vary widely.

That said, the only definitive way to determine viability is to treat the baby and see if they respond.

Ben Courchia, MD: I think that’s such an important point—the baby’s ability to respond to interventions. I often tell parents, “We’ll see if this is a partnership,” because that’s a big step.

I’d like your take on something more speculative. As you said, we’ve moved the limit earlier every decade. What’s interesting is that we’ve done this largely with the same basic tools—incubators, ventilation, parenteral nutrition. Whether it’s a 28-weeker or a 22-weeker, we apply similar principles. Do you think that to go even earlier we’ll need a paradigm shift—something like an artificial womb—or can we keep pushing the boundaries with incremental improvements?

Ed Bell: If we’re going to try salvaging fetuses from the first half of pregnancy outside the womb, yes, we’ll need something more drastic. But I don’t expect to be around to see that.

Ben Courchia, MD: That’s fair. It’s a tall task. I think every neonatologist develops a special affinity for one corner of our field—BPD, neurology, nutrition, family-centered care. For you, it’s clear that babies on the edge of viability have been a central focus. What drew you specifically to that area? Was it the medical challenge, the ethical questions, the emotional stakes, or something more personal?

Ed Bell: If you look at my career, my publications are all over the place. I first developed an academic interest in these tiniest babies when I started the Tiniest Babies Registry back in 2000.

That idea actually began in 1994. I was on call for a 27-week pregnancy, and OB told us the baby would be very small—under 500 grams. It was a very much wanted pregnancy. The baby was born at 359 grams, we resuscitated her, and she survived.

The parents asked me, “Are there any other babies this small?” That question sparked the registry. By 2000, I had found about a dozen cases and put the registry online. Today, we have 324 babies recorded. It’s more of a hobby than an academic project, but I’ve published two reports from it. These are usually very growth-restricted babies, which is different from the gestational-age limits of viability.

For extremely preterm babies, I credit Matt Rysavy with piquing my academic interest. He was a PhD student in epidemiology at Iowa. I showed him NICHD Network data where mortality for babies under 1,000 grams varied tenfold between centers. Matt looked deeper and found that 70% of the difference in mortality could be explained by whether centers actively resuscitated these babies. That led to his New England Journal of Medicine paper in 2015, which came out a week before he graduated from medical school. That paper made a lot of people rethink 22-week babies and contributed to the survival curve moving upward.

Ben Courchia, MD: Yes, and for listeners, we actually spoke with Matt Rysavy and others on episode 247 of the Incubator podcast about the Tiny Baby Collaborative.

As I was preparing for this interview, I realized how difficult it is to cover all your contributions—you’ve been at the forefront of so many pivotal studies. From your perspective, how do you reflect on the evolution of our field? To me, it feels like neonatology has become incredibly complex—almost a “chimera,” to borrow Stephen Hawking’s phrase about the 21st century being the century of complexity. We care for babies across a wide gestational spectrum, each with slightly different physiological needs. How do we, as neonatologists, remain agile, unified, and effective while navigating this rising complexity?

Ed Bell: I think that’s what makes our work exciting—we’re always learning. Even now, at my age, I’m still learning new things, keeping up with the literature, attending conferences and webinars. Neonatology never stagnates.

Ben Courchia, MD: That’s so true. There’s always room for one more question, which can open doors to new insights if you’re willing to follow them.

Do you think we’ll see further subspecialization within neonatology? We already have neonatal neurocritical care, neonatal hemodynamics, neonatal nephrology. Will neonatology remain holistic, or will these areas grow into separate specialties?

Ed Bell: That’s a really good question. I think our care benefits from having sub-subspecialists involved in the sickest babies. But I am concerned, because I now sometimes defer conversations with families to these teams. It means I must stay agile and make sure that even if I’m not a neurocritical care or hemodynamics specialist, I still understand what’s going on.

Ben Courchia, MD: Yes—and you can see the same trend in textbooks. Older editions were one volume. Now, every subspecialty has its own multi-volume set. It’s daunting.

I want to ask about the University of Iowa. It’s fair to say your program is world-renowned for its approach to extremely low birth weight infants. We’ve also seen other regional models emerge, like in Japan or Scandinavia. These models are often bundles of interventions that, when combined, lead to significantly better outcomes. Should every NICU develop its own model, or should they emulate the proven approaches of others?

Ed Bell: That’s at the heart of the Tiny Baby Collaborative. It started with four centers that had maintained over 50% survival for 22-week babies for a decade or more: the University of Iowa, Uppsala University in Sweden, the University of Cologne in Germany, and the Japanese Neonatal Network. Matt Rysavy, while still a fellow here, brought these groups together to compare practices. They found some similarities, some differences—but the one universal factor was culture: the belief that these babies can survive and do well. That belief, more than any technical intervention, is the key.

I still wonder whether all level IV NICUs should develop the capacity to care for 22-week babies, or if there should be designated centers of excellence, like for ECMO or other specialized care. It’s a difficult question. I think in time, outcomes for 22-weekers will be as good everywhere as they are now for 24-weekers. But how we get there is the challenge. I know there are colleagues out there who think we should not be treating 22-week babies because the results are going to be poor. And of course, if you're one of those individuals, you shouldn't be trying to care for those babies, because results are going to be poor. Yet with time I see the mood shifting and I see more and more people wanting to provide good care for these babies and achieve good outcomes. I think the Tiny Baby Collaborative webinars are very helpful. There are more and more centers joining the collaborative and contributing data.

I have a colleague, John Klein, who's retired from our faculty, but who travels around the US and around the world giving seminars and workshops on how to care for 22-week babies. He's a very good teacher and people that have attended his sessions are finding better results. But that's what he's teaching is just the Iowa way, and that's not the only way. We have certain beliefs and strategies about how to care for these babies, including putting them all on jet ventilators from the time of birth. But there are other centers that use other modes of ventilation that have equally good results. So clearly, there's not just one way to skin a cat and you can get equally good results with other strategies. But the key element is the culture and the belief. And that's hard to get started because your initial results aren't going to be great.

Ben Courchia, MD: That’s such an interesting point—consistency in culture and mindset as a cornerstone of success. Sometimes, when people ask about Iowa’s outcomes, they expect a secret intervention or a new drug. But what you’re saying is that the core factor is a shared belief system among the staff. Consistency matters almost more than an individual intervention in a larger bundle. I'm curious what your thoughts on the importance of consistency.

Ed Bell: I think it's very, very important. You may not want to throw out all your ventilators and buy jets, if you're good with conventional ventilation. You don't want to have a different attending come on duty and change everything. You want to have a team that works together and agrees on a standardized approach, even if it's not absolutely evidence-based. There should be some evidence, hopefully, but it's not always going to be based on randomized clinical trials. There are very few randomized clinical trials that involve significant numbers of 22-week babies.

Ben Courchia, MD: I wanted to ask you've been a witness and very often a driver of some of the most pivotal advances in our field over the past decade. As you think about the future, what areas do you see as most ripe for breakthroughs? Are there specific aspects of neonatal care where you think the next big leap will happen?

Ed Bell: I think that's going to be for you younger guys to figure out. I think I would like to see continued emphasis on improving neurological outcomes. I think that we're doing pretty well with other outcomes. And I am not terribly concerned with the neurodevelopmental outcomes of these babies at the limits of viability. We don't have very much data beyond two years and even that is limited so far, but what we've seen so far is that the 22-week babies' outcomes are not very different from the 23- the 24-week babies, and that half of them or two-thirds of them have no significant impairments. But I think we need to keep working on ways to minimize and improve brain outcomes.

Ben Courchia, MD: What do you think about the way in which we measure long-term neurodevelopmental outcomes? I think the fairly uniform approach has been, like you just said, around two years corrected age with maybe a Bayley test. That has been the gold standard until now. Do you think we should work on improving how we evaluate outcomes, or do you think what we’re doing now is sufficient?

Ed Bell: Well, I think Keith Barrington and others have pointed out the limitations of the standard primary outcome in clinical trials—death or neurodevelopmental impairment—because having a Bayley language score of 80 is not equivalent to death, obviously. We need to be very careful in looking at how we combine outcomes. The Bayley itself has limitations and has changed from version to version. I think we need to focus more on what outcomes are truly important to patients and parents.

We’ve taken some steps in that direction. Parents aren’t so focused on scores; they care about things like: Is my child happy? Does my child have friends? When my child becomes an adult, will they be able to work, have relationships, get married, and have children? I think we need to place more emphasis on those kinds of outcomes. We’re making progress, and Annie Janvier has done some really important research focused on these areas.

Ben Courchia, MD: Yes, we’ve had Annie Janvier on the podcast, as well as Keith. They’re great in that regard. I agree—more and more data is emerging that pushes us to think about the entire life course of a former preemie rather than just a single measurement in time, like a Bayley at 22 months.

What are your thoughts on the challenge people raise: that it would be ideal to have better long-term understanding of our patients’ life course, but it’s difficult to connect that back to the interventions we’re doing on day one of life? Can we meaningfully make that connection when looking six or seven years down the road?

Ed Bell: That’s the big challenge. You can do a randomized clinical trial where you change one intervention out of a thousand, but the other big challenge is funding. That’s why we have two-year outcomes and not ten-year outcomes—because nobody wants to fund studies that long.

Ben Courchia, MD: Right. Do you think that because of funding, and because of the complexity of our patients, we’ve seen several trials recently that are very difficult to run as traditional randomized controlled trials? There’s a lot of talk about innovating in trial design. Do you think we’ll see a shift in how studies are conducted in the future?

Ed Bell: I think there are opportunities for innovations in trial design. But I don’t think randomized

Ben Courchia, MD: That makes sense. As we get to the end of our talk, you’ve had such a long and influential career—mentorship, research, clinical care. If you were speaking to a young neonatologist today, someone just finishing fellowship, what advice would you give them about building a meaningful and impactful career?

Ed Bell: For me, academic neonatology has provided the best of all worlds. Clinical care provides that wonderful experience of one-on-one interaction, seeing the benefits of response to your interventions with the patient, and the contact with the family. I've been able to help thousands of babies and parents, but the teaching aspect takes it to the next level. The students and residents and fellows that I've helped to teach, they go out and help more patients and families. That's tens of thousands of people. Then through the research I've done, that's benefited hundreds of thousands of patients around the world. So to be able to help people on all of those levels has been remarkable. But academics isn't for everyone. you know, I think you have to think about what's going to be best for you and your family. The work-life balance is certainly better now than it was when I started out. The possibilities for young neonatologist to have a good family life are better. We have good work hour restrictions in place for trainees; we need to do the same for faculty. I think they're not bad in private practice, but we need to keep paying attention to the wellness of faculty. And I think we're making good strides. But I would say, find out what brings you joy and pursue that.

Ben Courchia, MD: Dr. Bell, this has been such an enlightening conversation and an honor to have you on.