In Our Nation’s Service… for our babies

On August 9, 1963, in a small room at Boston Children’s Hospital, a father stood helpless as his newborn son struggled for breath. Patrick Bouvier Kennedy, born five weeks early, would live only 39 hours. Those moments between first cry and last breath break your heart. The President’s grief was private, but the questions his son’s death raised were not. Why couldn’t medicine save a baby born to unlimited resources and the finest doctors? In the wake of that heartbreak, researchers who had been quietly working on the mysteries of premature lungs suddenly found themselves with funding, urgency, and a nation’s attention. Although Patrick’s life was cut short, the death of the Kennedy baby sparked a revolution in neonatal care. The science of keeping premature babies alive was about to change forever, born not from textbooks or lab experiments, but from the raw, universal heartbreak of parents who refuse to accept that some babies are simply too small to save.

On February 17, 2004, Grace Hofreuter Landini, born eight weeks early, survived. Until I walked with Dr. David Myerberg, I didn’t know about the Kennedy baby. I didn’t know the impetus for neonatology. I just knew I wanted to walk with this man who knew the name of every baby and parent he saved for over a decade. It is on his shoulders that Grace’s doctor stood to save my little girl.

Dr. Myerberg: The Kennedy baby was the point. Do you know about the Kennedy baby? 

Liz: I don’t. 

Dr. Myerberg: Okay. So John F. Kennedy and Jackie had a baby who was 35, 36 weeks gestation. So your baby was much smaller than that. And this, of course, was in the early ’60s, I believe. He was in the White House. They had this baby, and the baby died. Died of hyaline membrane disease. And I’m sure that the politics of it just exploded at that point. God, it was the President’s baby, and the baby should have survived. And we got to start doing some research on this. It just took off. Politics matter. I don’t think any of the people whose babies were saved over the next 50, 60, 70 years, realize how that happened.

But it happened. And I believe that there were some pretty good units already, and good research in Europe and in Australia, so US was able to take from the rest of the world. But man, it happened. And it happened primarily because of that. Now, I’m sure, go back and read the history of this, that there were people who were talking about this for a long time before the Kennedy baby.

Liz: But it didn’t get the momentum. The story wasn’t told. 

Here’s what’s remarkable: it wasn’t just the tragedy itself that sparked a revolution in neonatal medicine—it was the power of a story that the whole world could understand. Respiratory distress syndrome, as it is now known, wasn’t an obscure medical condition affecting nameless premature babies; it was the thing that took Patrick Kennedy from his parents’ arms. Scientists who had been working in relative obscurity found themselves with government backing and public attention. The story gave the research a face, a name, a family that millions knew and grieved with. There’s something profound about how narrative can accomplish what statistics never could. Stories transform us and demand our attention and action.

Every story matters… especially the stories I heard from Dr. David Myerberg as we walked through the trails at Cooper’s Rock outside of Morgantown, West Virginia. He made this his home after medical school because…

Dr. Myerberg: They were just starting a neonatal unit, and it was like, okay, build something. You’ve had all this incredible training. Build something. And so that’s why I came here.

Liz: When you say they were just starting it, how far along were they? How responsible were you for the building of the neonatal unit?

Dr. Myerberg: It wasn’t just the building, but it was the spreading of neonatology doctrine over the rest of the state. They had built a unit, which was eight beds, and they were doing it. But they were doing it with one person who had done her residency there and with the support of the rest of the staff, so they didn’t have enough people to really run a neonatal unit. And so I came in as the second.

It was fun. It was great. I swear, The first 10 years or so that I was there, I remembered almost every baby.

Liz: Oh, my goodness.

Dr. Myerberg: And all the parents. It was wonderful.

Liz: And are all the children in a neonatal unit at serious risk?

Dr. Myerberg: Yeah, they wouldn’t be in the neonatal unit unless they were. They’d be in a normal nursery. At one point, I had a kid who came into the NICU brain dead. And we had to tell the parents that that was the case, and there was nothing more we could do. And so the baby died. And this baby was a SIDS case.

SIDS – Sudden Infant Death Syndrome. If you have been pregnant, you know exactly what that is. It is the reason Grace and Ella slept on their backs on a sheeted mattress with no bears, bumpers or blankets. The list of don’ts goes on. The warnings come at you from everywhere once you know to listen for them. Your hospital discharge nurse reviews safe sleep practices before you leave with your newborn. Your pediatrician reinforces them at every well-child visit. Even the tags on baby products remind you of the rules. It’s not fear-mongering—it’s evidence-based prevention delivered with the kind of repetition that ensures you’ll never forget, even at 3 AM when you’re so tired you can barely remember your own name. The safe sleep guidelines aren’t a guarantee against heartbreak; they’re simply the best tools we have to tip the odds. 

Or so I thought. In West Virginia, we have another tool: The Birth Score.

Dr. Myerberg: I began to understand what these parents go through and how important it is for doctors who do neonatology to understand SIDS. Not just understand it, but maybe do something to prevent it. So In the late ’80s, I got a federal grant for this, and started a program that was called the SIDS Prevention Project.

He learned

Dr. Myerberg: …sometimes these babies have apnea, and it’s unknown to the parents.

Liz: At birth, they have apnea?

Dr. Myerberg: Well, no, they have apnea when they go home. And it’s unknown to the parents. Sometimes the parents notice it, but sometimes they just notice it when the baby’s dead. There was some literature at that point that led people to believe that if you monitored these babies, you found out who they were first. Based on certain criteria, you monitored these babies, and you could keep them from dying.

Liz: Wow.

How did I not know this? I knew “Back to Sleep” but there was more.

Dr. Myerberg: That was part of the SIDS Prevention Project. The other part of the SIDS Prevention Project came from England. There was a guy named Robert Carpenter, who was basically a statistician and a pathologist there, who did some studies that showed that these SIDS kids didn’t grow properly before they died and that they had problems. This was where the pathologist came in, he went back and he met with the families. They said, “So I need to know, were there things going on?” Well, yeah, there was this. They weren’t growing well. They weren’t eating well. 

Liz: Failure to thrive? 

Dr. Myerberg: Yeah, failure to thrive. Occasionally, they would say, Yeah, baby had some spells where I thought the baby stopped breathing, but then it started, so I didn’t do anything. And so they put together a program with their visiting nurse group, and they increased the number of visits that the nurses made. And they developed what they called the birth score. 

The birth score was this thing that they developed in Sheffield, England and what it did was treat the top 15 % of the kids with birth scores that were that high, and gave them special treatment with the visiting nurses. 

Liz: So just those babies the most at risk.

Dr. Myerberg: Risk scoring has been around for a while, but this was the first time they ever did that. I read about that and I thought, we could put together a program in West Virginia where we not only taught the doctors how to recognize the ones that needed to be monitored. And at the same time, we could convince the public health service in West Virginia to do more visits on the kids who were more at risk. 

What it showed was over a relatively brief period, the number of SIDS cases in West Virginia dropped precipitously.

Liz: Wow.

After their remarkable work with the SIDS Prevention Project Federal grant, Dr. Myerberg was asked by the American Academy of Pediatrics to join two other researchers to evaluate the world literature on whether the Academy should recommend “back sleeping” to prevent SIDS. The results of this were published in 1992, which is considered a seminal publication that supported the “Back to Sleep” initiative adopted by the AAP.  He was asked to travel around the US to speak about this research ¹.  Turns out… my walking companion is at the heart of all I had known about “Back to Sleep.”

Dr. Myerberg: And that then was followed up a few years later, I was gone by the time they did this… I wanted to do this, but I was in law school at the time… but they went to the legislature and they had this program, the birth score, passed by the legislature to continue. And my bet is that your little twin got a birth score. 

My little twin. Grace of my heart. Born

Liz: At 32 weeks, I didn’t know anything was wrong. I went in for a regular checkup, and there was only one heartbeat. 

Dr. Myerberg: How was the little girl?

Liz: She, God love her, fought like crazy. I got very upset any time any of the doctors from the NICU would talk to me because they would talk to me about she’s really a miracle baby, be part of our miracle network. And I’d get mad because to me, that meant there was still a chance I could lose her. 

Dr. Myerberg: And How big was she? 

Liz: She was three pounds, six ounces.

Patrick Kennedy was four pounds 10 1/2 ounces.

Dr. Myerberg: Okay, so 29, 30 weeks. Three pounds, six ounces.

Liz: She was 32 weeks by the time she was born.

and the babies next to us were one-pound babies, and they had cocaine in their system. 

Dr. Myerberg: Oh, boy. That’s something else, how much of them are, how many of them are affected by drug addiction.

Liz: Would that be what you saw the most of?

Dr. Myerberg: No, I didn’t. 

Liz: You didn’t? 

Dr. Myerberg: Because see, I was out of there by ’92, ’93. I went to law school.

Law school. That is the second time he referred to the pivot in his life. After championing neonatology for over a decade, Dr. Myerberg went back to law school. Like many mid-career pivots, there was a confluence of reasons he made that decision. Some of them echo mine.

Dr. Myerberg: I don’t think that I was appreciated because… And I don’t know. That’s ground-breaking. Maybe egotistical, but I felt like it was the work that should have been recognized by the department. I was an associate professor. I left as an associate professor. And it just seemed to me like getting promoted to professor was the next step. Never happened.

Liz: So any story of pivoting in your career, there’s not just a single catalyst. 

Dr. Myerberg: No. 

Liz: There’s a couple of things happening.

Dr. Myerberg: Oh, yeah. Oh, no question about it. I told you that I remembered all the babies. From about ’88 to ’90, I didn’t remember any of them. I didn’t remember the parents or anything. It was just like slogging through to get it done. 

Liz: Believe me, I can feel that moment of not knowing the baby’s names anymore because that’s partially why I left my headship.

Dr. Myerberg: I was wondering.

Liz: It’s very similar. There was an email asking if it was okay if a boy was tutored at a specific time on two different days. It was mid-school day. I said, “That almost seems impossible. How’s the family going to get him here? Is he homeschooled?” The email came back, “Liz, he’s a second-grader at Country Day.” I don’t know what the tone was. It was an email. But what my mind heard was, “Liz, come on. You don’t know this kid. You should know this kid.” And that was the first rock out of the dam that I said, this school and every child here deserves a head that is focused to know them all. 

Dr. Myerberg: So that was one side of it. From the beginning of my medical practice, I became very interested in medical ethics. I became a part of what was known as the Ethics Group at WVU in Morgantown. I had some knowledge of the medical side. I had some knowledge of the ethical side but there was always this little thing that kept creeping in. It was the law. And I look at it as a three-legged stool, and I didn’t know anything about that leg. 

I finished up the research that I had done on Sudden Infant Death Syndrome…and I needed something else. And I thought, I’ve always really wanted to understand this legal stuff as part of the three legged stool.

And so Dr. Myerberg traded his stethoscope for legal briefs. A lawyer with medical expertise brings real clinical experience to the courtroom, thus he adeptly defended hospitals, doctors and nurses through Jackson Kelly PLLC for the next twenty years.

Liz: You weren’t turning your back on medicine. You were adding to your body of understanding. 

Dr. Myerberg: Right.

It turns out Dr. Myerberg and I share a common history: we were both Sociology majors at Princeton. It was there in the hollowed office of Dr. Marvin Bressler that I learned to say, “I don’t know” and then take the admission as a catalyst to learn something new.

There’s something beautifully brave about the three words “I don’t know” that we’ve somehow trained ourselves to fear. We sit in meetings, classrooms, and conversations, nodding with what we hope looks like understanding while our minds scramble to catch up with concepts that sailed right past us. The moment you say aloud “I don’t know,” you create space for real learning to happen. You give the other person permission to slow down, to explain differently, to meet you where you actually are instead of where you’re pretending to be. That honest admission transforms you from a passive nodder into an active participant in your learning. It signals curiosity over pride, growth over appearances. And perhaps most importantly, it models for everyone around you—especially children—that not knowing isn’t a failure, it’s simply the starting point for discovery. The courage to say “I don’t know” is actually the courage to say “I’m ready to learn,” – added proof that vulnerability is in service to understanding. 

Dr. Myerberg is more than his professions… I love adding the plural to that word. He is a father and a husband.

Liz: And where in the story do you meet your wife?

Dr. Myerberg: So I met my wife at the time that I was putting together this SIDS Prevention Project.

Liz: Before the sabbatical?

Dr. Myerberg: Right. A few years before the sabbatical. Actually, I met her because of an ethics consult. 

Liz: Oh, really? 

Dr. Myerberg: She was an obstetrics nurse in Cumberland, which is about an hour away from Morgantown. And they had a baby who had what’s known as anencephaly. And I don’t know I don’t know whether you’ve ever heard of that. 

Liz: I’ve not. 

Dr. Myerberg: It’s about as bad as it gets. The head just doesn’t grow. The brain doesn’t grow, so the head doesn’t grow. Some of them can breathe on their own. But many of them have serious problems and die within the first week or two of life. And there’s a debate as to what you should do with such a baby while it’s in the utero and also when it’s born. And they had a problem in their unit. She was a head nurse of the OB unit, and they were having a problem between the nurses and the doctors. And the doctors basically said, “Look, we’re just not going to give anything to this baby. The baby’s going to die.” And the nurses were saying, “Well, the baby’s hungry.” so they needed a mediator… so I went up there and I met Cynthia.

I had met her before this, but I didn’t really focus in on her and talk to her a lot because… And she remembers this. I told you about neonatology not having enough staff. Well, we had to to go out on transports. And I got a call that there was a transport. I don’t remember what year this was. It might have been ’82, ’83, something like that. I got a call at home, there was a transport of twins from Cumberland to Morgantown. And they weren’t terribly sick, but they were too small for them to take care of.

I think we took an ambulance up there and got the twins. And when I went to go to the ambulance to leave from Morgantown, I just put on anything that I could find. And it happened to be one of these what are the Jean things called that have the…

Liz: Oh, the overalls?

Dr. Myerberg: It was an overall. I just put on these overalls. And I had a big beard at the time. And so I went out there and she said… She told me this later. They were standing in the background while we were getting the babies ready. And she said to one of the nurses, “Do you think we ought to let him take these babies?” She didn’t know me from Adam. I introduced myself. I said, “I’m a newborn intensive care doctor, and we go on all these transports.” And she nodded her head, and she turned to this nurse.

Liz: Oh, that is too funny.

Dr. Myerberg: Here I was looking like I came out of the holla.

The West Virginia holler. If you know, you know.

After such a rich life, Dr. Myerberg is very grounded.

Dr. Myerberg: I wake up in the morning and I say six words. I want to be reminded of them every day. So the first word is gratitude. And gratitude comes from just being grateful that I’ve lived a charmed life. And more than that. Gratitude for my wife and gratitude for my kids and so forth and so on. And the second word is compassion. And that’s been very important in my life. When I drive by a dead deer on the road. I go, oh, shit. You know? I don’t know what other people do. 

Liz: So I picked up the habit in my divorce of writing down three things I was grateful for as soon as I woke up in the morning. And it’s amazing when I looked back how many times I wrote ceiling fan. I wouldn’t let myself constantly write my daughters. It just didn’t It seemed like I was being creative enough. And so I would write ceiling fan every once in a while.

I am, afterall, a woman in her late 50’s. A ceiling fan can be the difference between a good night’s sleep and a bad day. Again, if you know, you know.

Dr. Myerberg: The third one is love. And I’ve had wonderful love in my life, from my parents and grandparents and friends and wives. But then following that is patience. Because you may get love, but you don’t keep love. You don’t keep any of those things without patience. And so we’ve got gratitude, compassion, love, patience. And then the the fifth one is self-respect. I don’t think that I can have self-respect without following that credo from Princeton. 

He is referring to “Princeton in the nation’s service.”

Dr. Myerberg: I don’t think I can. I wouldn’t. I wouldn’t have that. But it’s even more than that. I mean, there’s all sorts of stuff that I do where I say, Wait a second. Have a little self-respect here.

Liz: So it encompasses treating yourself kindly?

Dr. Myerberg: Yeah, treat yourself kindly. But at the same time, you can’t have self-respect unless you treat others kindly. You just can’t.

Liz: And the sixth?

Dr. Myerberg: Humility. And that is one that I see so many examples, especially today, of people who have no humility whatsoever. They just want to slash and burn. You got to have humility. When you have humility, you can see other people and what they need. I mean, it goes along with compassion. It goes along with love. I just say it every day. I thought a few years ago maybe I ought to change up the words.

Liz: Change the order or change the actual words?

Dr. Myerberg: No, just change them up. Just find some other words. And I thought, no, these are fine.

Liz: It would be hard to take one away. I could see adding something, but I can’t imagine replacing something. Humility to me is what changed everything or what made me a good teacher all along. But what changed me as an educational leader was realizing how we have to humble ourselves to learn something and when you ask children to learn something, you forget that they, too, have to humble themselves, especially at a time in middle school where they’re just figuring out the bravado, that façade they have to have in order to make it in the world socially. And then you’re asking them in front of those same peers that they’re trying to navigate around landmines, you’re asking them to publicly show, “I don’t know how to do this.” And what compassion was necessary for a teacher to have in order for those children to really be able to learn and not just complete work, but actually learn it. And that was a game changer for me.

I walked with Dr. Myerberg because his son, Jonah, told me to. Jonah had been a student of mine decades ago. We caught up at the Boston Celtics game when I walked with Ashley Battle. He bought me a beer and a burger before tip off. He asked about Grace. He suggested I reach out to his dad who had been instrumental in the neonatal unit, so I did. Honestly, I did it as much as a thank you for the conversation and the burger originally. Now I owe Jonah an even greater thank you. Walking with his dad was yet another game changer for me. It has pivoted a plan for how these walks should show up in the greater universe. It has reminded me that our lives touch so many other lives – our reach is unknowingly exponential.

It also reminded me that a young life lost can spark hope for many others. In 1963, 10,000 babies died like JFK’s son. Today those babies would have a 95% chance of survival. In looking up that data, I read the following:

“In the days surrounding tiny Patrick’s death, [the President] was seen weeping on three occasions; alone, after the boy’s death; when telling his bedridden wife about the ordeal; and at the funeral, so “overwhelmed with grief,” Cardinal Cushing recalled, “that he literally put his arm around the casket as though he was carrying it out.” 

That story needs to be told. John F. Kennedy was not an emotional man. His tears speak to the devastation of the loss of an infant. The story was lost in our collective history because 15 weeks after the death of his baby, President Kennedy was assassinated.

Dr. David Myerberg picked up that story and did his part to rewrite the narrative for countless babies in West Virginia… in the nation’s service. I feel called by the humility and compassion of this man to further that cause for children. I could not be more grateful to him.

1. Kattwinkel J, Brooks J, Myerberg DZ: Positioning and SIDS: AAP Task Force on Infant Positioning and SIDS, (1992), Pediatrics 89,6,1120—1126. ↩︎

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