#014 - Dawn Raffel - The incredible story of Martin Couney (Book club episode)

Dawn Raffel's book: The Strange Case of Dr. Couney was chosen as one of NPR’s best books of 2018 and awarded a 2019 Christopher Award for books that affirm the highest values of the human spirit. 

As Dawn Raffel recounts, Dr. Couney used incubators and careful nursing to keep previously doomed infants alive, while displaying these babies alongside sword swallowers, bearded ladies, and burlesque shows at Coney Island, Atlantic City, and venues across the nation. How this turn-of-the-twentieth-century émigré became the savior to families with premature infants—known then as “weaklings”—as he ignored the scorn of the medical establishment and fought the rising popularity of eugenics is one of the most astounding stories of modern medicine. Dr. Couney, for all his entrepreneurial gusto, is a surprisingly appealing character, someone who genuinely cared for the well-being of his tiny patients.

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As always, feel free to send us questions, comments or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through instagram or twitter, @nicupodcast. Or contact Ben and Daphna directly via their twitter profiles: @drnicu and @doctordaphnamd.

Enjoy!

As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below.

Enjoy!

Transcript

Ben: 0:04

Hi, everybody, and welcome to our first book club episode here on the incubator podcast. We're so grateful to have author Don Raffo with us today. I'll tell you a little bit about Don and then let her introduce herself. So Don raffles most recent book, The Strange Case of Dr. Cooney was chosen as one of NPRs best books of 2018 and awarded a 2019 Christopher award for books that affirm the highest values of the human spirit. Her previous books include a memoir, The Secret Life of objects, a novel and two story collections. A longtime editor, she helped launch, oh, The Oprah Magazine, where she served as executive article editor for seven years. She also taught creative writing at Columbia University Center for Fiction in New York, and summer literary seminars worldwide. She continues to teach mentor and work as an independent editor. Don, we're so happy to have you with us today. Thank you so much.

Dawn Raffel: 1:44

Oh, thank you. I'm delighted to be here.

Daphna: 1:47

So I'm going to start off by asking you, I'm sure question you've had many times. You give some hints in the book, but how did you end up pursuing the topic of Dr. Cooney and the incubator shows? What about his story was so appealing to you?

Unknown: 2:07

Yeah, so I stumbled onto this story. I certainly never set out to write a book about neonatology. I'm not a doctor and I wasn't a preemie. And I didn't give birth to a preemie. I was doing some research on the Chicago World's Fair in 1933 and 34, for a what has actually become a novella. But while I was looking at that research, I was looking at lots of old pictures. And I was utterly shocked when I saw this photo of a incubator side show, live babies and incubators. And this wasn't in the Hall of Science, either. This was like a sideshow. On the midway. I couldn't believe it. And so I was thinking about that. And while that was going on, I live outside of New York City. And so I heard there was a museum at Coney Island, which is kind of like the the people's playground and I went out there with a friend and I took my breath away, because all of the sudden there's another picture of this Sideshow with the preemies. And it was the same person running it. And what I realized is, this wasn't even a one off, it wasn't something that was done for one World's Fair. It went on for 40 years. And it went on for 40 years at Coney Island at Atlantic City at all these other worlds fairs. And so I thought this is so crazy. How could this possibly happen? I thought there would be a book about it, but there wasn't. And so then I just ended up going down a years long rabbit hole of of research.

Daphna: 3:51

Yeah, it sounds like it was a lot of work.

Unknown: 3:53

It was I had no idea what I was getting into, which is probably a good thing.

Ben: 3:59

Hi, Don, thank you. Thank you for being on the show. I guess. My first question is once once you you found that Martin Cooney was putting on display preterm babies and incubators at various amusement parks and fairs. What happened when you realize that it was not just a freak show, but that she was actually conducting proper medicine and saving babies and that and that this wasn't a freak show at all that it was really trying to promise life as you say, in the book to these families?

Unknown: 4:28

Yeah, well, so one of the things I really couldn't understand was them. Why did it take so long for this to be a part of a normal hospital protocol? Why was the medical establishment resisting this technology for so long? And it seemed like there really wasn't a single answer. You know, some of it was just the difficulty of introducing a new technology into hospitals that at that time, were just grievously underfunded and understaffed. Part of it was misunderstanding How to use it. Part of it was that it wasn't really just a toaster oven, it was an entire comprehensive system of caring for preemies. And part of it that I was really shocked to see was the way that eugenics was sort of adjacent to the care of premature babies so that it didn't directly target preemies ever. But there was really a premium on survival of the fittest and making better babies. And I think in a country with a lot of immigrants and too many hungry mouths to feed, there was also an attitude of well, you know, these little ones are kind of It's nature's way. They're nature's mistakes, the mother will have another baby. There just wasn't a whole lot of there were certainly some people heroically fighting for preemies. But overall, there wasn't really a lot of effort put into this.

Ben: 5:58

And I think we're going to get back to the topic of eugenics in a little bit. But that was obviously something that that when you start reading the book, you wonder is why would preterm babies be exhibited at amusement parks when there were hospitals at the time. And then in the book, you go over the treatment of the, of the delivery of the woman in labor in hospitals, and you kind of understand why people tend to deliver at home. The people listening I think, I want to quote the book itself, but expectant mothers with any sorts of mean chose not to go to lying in hospital the protocol was harsh. A few years earlier, a nurse trainee had recorded it on admission, kerosene and ether were applied to the woman's head, and her hair was washed with ammonia, then braided. Her nipples were clicked were cleaned with ether and Abilene. Her pubic hair was shaved unless she was a private patient, in which case it was clipped. After giving birth, she had to lay flat for 24 hours and couldn't sit up for the first five days, you could consume only milk, no food, until, until two full days had passed. For a woman who lived in a squalid, overcrowded tenement and whose days were filled with backbreaking physical labor. This may have been helpful, but someone with a comfortable home would give birth in her own bed. I was I was very shocked by this description. And it made a lot of sense then for mothers to continue delivering at home and avoid the hospital altogether.

Unknown: 7:14

Yeah, definitely. And, you know, hospitals that that they were dirty, you know, is a good place to get sick. And they were very, very understaffed. So the few hospitals where maybe they had an incubator or two, they didn't have enough, so they'd have to shove multiple babies into the same incubator or take them out before they were ready. The nurses didn't have time to clean them. And they also we're using cow's milk or some other mixture, too,

Ben: 7:47

which could get infected easily and cause trouble for the baby, obviously.

Unknown: 7:51

Well, it did. And you also have to think they didn't really have great refrigeration back then either.

Daphna: 7:56

Yeah, I really liked how you were able to outline those differences. And especially, you were very clear about some of the hygiene practices that that they were using, which were really ahead of their time. I liked this quote, was simply impossible to credit such an unorthodox, unscientific practitioner in the rigorous world of peer reviewed publications. And I wonder, you know, you hinted this to what role did Dr. Cooney have in not being accepted into the mainstream? Because sometimes it feels like he wanted to, and then sometimes it felt like, well, he didn't really want to be accepted either. I don't know what you think about that. He was such

Unknown: 8:46

a complicated person. And I. So originally, I went into this believing the narrative that he really had been a doctor in Europe, and I thought, well, maybe I figured there was something in his background, and I thought maybe he got into some trouble in Europe or something happened, where he left. I was really surprised to discover that, so he wasn't a doctor. And I would have judged him a little more harshly if he had been a doctor, because then I would think, Okay, well, if you really were a doctor, and you really cared about these babies, then why wouldn't you make the effort to publish clinical results in a peer reviewed journal, which would certainly speed things along, but he couldn't. You know, same question, why wouldn't you at least try to work in a hospital setting even though it would be really frustrating other people did at least try? He couldn't. So I think he, you know, in a way, I think he also painted himself into a little bit of a corner. So when he first started his first show was actually in England and he wasn't even calling himself Dr. Hakuna. He was calling himself Mr. Colony. They're calling himself Dr came later. And I think he may have just started off as like thinking this is a cool way to make some money show a new piece of medical technology, not really pretending to be a doctor. That changed over time, he may have felt he had to in order to stay in business, he became Dr. Cooney. He was Dr. Kootenay for a minute that didn't really work out so well. But I think he he also sort of realized that well, what would happen if he quit, these babies would die. There was nobody else coming for them at that point, you know. And he was, he kind of loved being a show man. Also, he was really good at it. And I think he enjoyed that part of it. He wasn't really directly taking care of the babies himself at all. He had really skilled nurses there who were probably the secret sauce. And then he had assistants who were very young doctors who had a medical license who could sign papers. And so he was really kind of the front person. And I think he enjoyed it.

Ben: 11:11

I think that was what I think that's what was so modern, I think about his approach to neonatology was the fact that he placed the care of the babies into the hands of of nurses and wet nurses. And and you say that in the book, you said that Dr. Martin Cooney didn't have a clue what to do with a newborn. In fact, she may need to remind him how to properly hold one. But he seemed to care was coordinating European easy to talk to. And while some of the city's physician would check in from time to time, she would run the nursery talking about about the nurse that was that was working with him. And I feel like it it brings more fuel to the fire of whether this man was was truly a doctor or not. But it is also how kind of the way unit all ICUs are being run these days, the nurses do all the work. And I remember very well myself being as a young doctor, having nurses showing me how to properly wrap a baby and do all these things. So So we've all been there. And and for people listening, I think it's important to realize that you're right, I don't think he could have managed to complete a full medical education in Europe, according to to the book. I mean, he was born in 1869. And it seems that he arrived in the US and called himself a doctor in 1888 at the latest, which I think would have made him 19 years old.

Unknown: 12:31

Yeah, he was 18 when he came here,

Ben: 12:33

exactly. And so to complete a complete medical education plus a full fellowship type of training in Paris in neonatology seems very far fetched

Unknown: 12:41

now, and you know, he claimed that his mentor was the great pair Baudin. But they're Pierre boo, Dan left, copious records of everything, and those are archived, and nowhere in them. Does he mention Martin Cooney, which, you know, you think somebody like that would be at least worth a mention?

Ben: 13:02

Yeah, absolutely.

Daphna: 13:04

Good point. Yeah, I like how you were so thorough and looking at the documentation, which I'm sure was a struggle given, you know, how, how things were recorded at the time.

Unknown: 13:18

It definitely was a struggle. As well, it's very hard to prove a negative. So I didn't really want to say he wasn't a doctor, unless it just seemed like, there's no possibility, you know, there's no, there's no medical license and record his story. When you line up his interviews, it keeps changing the dates of his immigration and his naturalization don't work. The records in Europe don't work in terms of his having been a doctor. But yeah, he did a really good job of obscuring things. And honestly, he was a very smart man, he was very good at covering his tracks, and how on earth he died in 1950, would you know that something called the internet would come along and reveal some of your secrets.

Daphna: 14:08

And you're so right, he was a very smart man, he surrounded himself with experts, you know, that could care for the babies and do the parts of the care that he couldn't do. And I think it's such a good reminder for us in the medical field that in listening to your book, that's just what kept coming up for me that this is really a team sport. And you know, you even gave credit, like he gave credit to the people who cleaned you know, his facilities because it's vital to the health of of babies to all of the medical community. And I wonder how you felt he perceived the medical community in contrast to what he was doing.

Unknown: 14:55

I think he had really mixed feelings. I mean, he did want to be accepted. He was Unless like courting doctors, he was constantly inviting doctors to come see his show and come out to dinner. And let me persuade you. And I think he mostly he really wanted to be accepted by them.

Ben: 15:15

And so I think it's where I think the book is, is a is full of contrasts, right? I mean, there's, there's the contrast and the contrast of Dr. Cooney is what's his deal then? Right. I mean, if he's not really a doctor, and he's trying to get accepted by the medical community, and he clearly won't, it's unclear whether he could have ever managed to be brought into the medical field. But then what is what do you think was his intended and his real purpose with this endeavor? Because it really seems that like you said, he was a genuine person, and he cared about the babies. And it was not that he was just there to make money, even though the the exhibitions were quite successful. I don't, I don't want to believe that it was all about making money. So then you wonder, did he did he find his passion for saving lives? And he found that maybe the fair was, was his arena? And that's where he was going to do it? Or do you think there was something else where he wanted to prove something to something somebody else or to the medical community at large? I'm not sure, based on your research what you came up with?

Unknown: 16:16

Yeah, I mean, you know, a lot of people have asked me about his motives. And I can't really say I fully know, even after all the time I spent thinking about him. But what I what I'm going to guess is that he did come from a family that included doctors, so that was sort of in his background. As I say, I think he may have just initially stumbled into something that was, you know, a way of making some money and exhibiting a really interesting new piece of medical equipment. But I feel like over time, he genuinely began to care. And he, he truly had a mission. And as I say, he was constantly trying to persuade doctors. I mean, another thing that made it very clear to me that he wasn't a doctor is that many doctors came over from Europe at that time, and they did what they had to do to become licensed in the United States, it might have taken a year or two. But really, it would have been worth it, considering what he was doing to you know, why not just go ahead and go through what you need to do to be licensed in this country, especially if you were educated in Germany, you would have probably had a superior medical education anyway. But no, I think he, I don't think he really saw that there was a conflict between his own self interest and helping other people. So I think he thoroughly did enjoy getting rich. He certainly enjoyed the finer things in life, and he enjoyed showmanship, but I also think he truly did care about these babies and these children.

Ben: 17:50

So that's, that's, that's the follow up question that I wanted to ask them is, isn't it the fact that he's courting the medical establishment and wining and dining with them? It's almost by the end of the book, you sort of realize it's almost suicidal? Because you wonder if the incubators do make it to the hospitals then he's out of a job. And at the end of the book you write in 1943, Cornell New York Hospital opened the city's first dedicated premature infant station. That same year, Dr. Martin Cooney closed his show for the final time he said his work was done. And it kind of coincided nicely that it happened seven years before he died. But if had this happened 20 years before, what I mean, what would he have done?

Unknown: 18:30

I don't know why he was sort of arguing to put himself out of a job. He really was.

Ben: 18:36

Yeah, this is this is nuts.

Daphna: 18:38

But I do feel like you said I, I felt he was an advocate, truly, whatever the initial findings of his work was, I do feel by the end of his life, he was an advocate. And I wonder how, you know, you feel what role he played in this conversation about eugenics? Yeah,

Unknown: 19:00

I think he was important because he kept saying that what he was doing was making propaganda for preemies. So he would have these reunion shows where he would show off his graduates and basically say, see, they look just like any other children. And so he and I think he was also extremely influential with Julius Hass, Who's the doctor who is known as the father of American neonatology. So toward the beginning, Dr. Has in Chicago, and Chicago was really at the forefront of early pediatrics in early neonatology. And Dr. Hess was one of the first people to really take Dr. Cooney seriously. It's unclear how much Dr. Has knew about Dr. Cooney not being a doctor. I think he probably didn't want to know too much. But he could see that What he was doing was working. And so Hass was really the first person to have a real neonatology station in a hospital setting which was in Chicago. It was grievously underfunded. He didn't have enough equipment. He was turning people away. He was relying on charitable donations. And he was very much a clinician, if you listen to the way he talked, he didn't really have a common touch a way of selling this to the public. And so he and Cooney were a really interesting, Odd Couple. And I think that Chicago World's Fair and 3334 in particular was pivotal, because Hass needed kind of a publicity machine. He needed somebody who was going to be the propagandists for preemies. And here he had this show, man, and the show at the Chicago World's Fair was a huge hit. There were millions of people who came to look at the premium show. And then they had a big reunion of all the premium who'd survived the summer before and it was broadcast on national radio coast to coast. So I think that was really important in first of all, now, this had the backing of an impeccable medical doctor who people could respect, no questions asked. And it also had the reach where they were really talking to the public and making the public understand that these babies can be saved and we should save them.

Ben: 21:32

Yeah, I think this is this is the part of the book where initially I thought Dr. Cooney was an innovator, because even though he did not design the incubators, even though he may not have been a doctor, sometimes a true innovator is able to take things that exist and put them together to create something new. And that's sort of what Dr. Cooney was doing. But then you introduce in the book, Julius Hess was this prototypical physician, the respectable American physician that you have the painting of in the hospital. And it reminded me of the beginning of the of the computer company Apple, where you have Steve Jobs and Wozniak, where one of them is a true engineer, and is able to build the computer. And then you have Steve Jobs, who everybody is arguing, could he have even built his own computer, it's not really clear, but yet he's able to sell the idea of personal computer to the public. And I think when you put the two of them together, they become this, this couple that, like you said, Pioneer neonatology in the United States, because the to the true credit of Julius has is that he was able to see beyond the stigma that were associated with Cooney and appreciate that what he was doing was actually working. And that might benefit patients. I think this is, this is where I believe the description you gave him in the book is quite splendid, because he he truly was able to recognize Dr. Cooney for who he was, which is somebody who was making a difference when everybody else was letting the babies die if they were not really measuring the right weights for the hospital.

Daphna: 23:06

Yeah, I think it's a good reminder to us in medicine, that we can't just keep working in our little silos, right, we to really advance the field, we have to take this multidisciplinary approach. And that means, you know, engineering and physics and the computer science people to really make these big kind of strides. You know, we can make small changes every day. But to really make the big changes, we have to work together and invite other people into our, into our sphere. I wonder, given you know, all the research you did for the book, you did have to spend some time in a kind of modern day NICU. What was that like for you?

Unknown: 23:55

It was amazing to just see, you know, what's going on. I was at Morgan Stanley children's, you know, and to see just how tiny these babies are, that they're able to save and they have, you know, the the equipment and the, you know, everything they have to save these babies is extraordinary. And yet I think many of the principles are similar to what Courtney was doing. So he was so far ahead of it when it first of all, he was insistent on breast milk. That was a big thing. And he was insistent on touch, you know, and that was very different in my understanding from sort of early neonatology where the idea was very sterile hands off. Apparently, he was just like, oh, kiss the baby, hug the baby. And nobody else would have done that. He felt like it was really important for these babies to be held and loved. And so he had these nurses there who were holding the babies on I and when I when I was in the NICU at Morgan Stanley, I saw that they really encourage the parents to be there as much as they possibly could. And you could see the parents with the tiny preemies showing them love. I think that's where

Daphna: 25:17

the pendulum is certainly swung back back and forth for sure. Yeah, I

Ben: 25:21

think he's, he's ahead of his time there. And and for the people who needed a little bit of a summary, he was promoting breastfeeding, he had wet nurses working in the building, so that she would be able to provide breast milk, which is we have evidence now in the medical literature that is not even 10 years old, where we're making the case more and more for exclusive breast milk, even if it's donor milk, then it's always better than, than cow's milk cow's based formula. And he he encouraged contact with the babies trying to reduce the bond between the separation between parents and babies. And he had this very equitable approach to health, I guess where the will treat everybody and no matter what their their race creed, and they would not pay anything. It's the people who came to the show that had to pay the entrance fee. And, and he was spot on for several things we were talking with definite before we started the recording that at some point, you mentioned that the stock market crashed and that you mentioned that the prematurity rates Shut up. And that Martin Cooney is sort of theory was that he blamed it on the mothers being overworked, stressed and poorly nourished. And it's very funny that we're discussing this now. Because as the pandemic started, everybody stayed home, the prematurity rates went way down. And we saw in our units, a huge decline in premature birth. And everybody said, maybe mothers are being overworked. And it's having this discussion when he was making that case. 50 100 years before so that's, that's so cool.

Daphna: 26:50

Yeah, and because he and you know, those things haven't changed, right? Moms today are still struggling with with these issues, for sure families today. And he would allow parents to be involved in the in the care. And he did, you did report on a bunch of families whose moms were bringing or sending breast milk back and forth, but because so many of these families were resource poor that, that they couldn't make the trip. But it was so valuable that he he had hired this group of people to act as surrogate parents to love on on the babies. And by your accounts, they really, they really did love those children. You know, when they had to return them, it was almost like they were returning they're their own infants. And, again, that's not something that we've quite swung all the way back on in the medical community. And so in our own units, we have lots of families who can't be at the bedside for a number of reasons. And we've not yet found an equitable way to support those babies. And so that was very striking to me.

Unknown: 28:01

Yeah, well, and one thing is during the Depression, sometimes he would hire the mother as a wet nurse. So she would live on the premises and take care of her own baby, and then she'd also to, you know, nurse, some other babies and he'd pay them.

Ben: 28:15

Yeah, so my question to you is, he is so far ahead of his time. He's such a good advertiser for for the case of premature infants. How come he never wrote anything, even if it hadn't been peer reviewed? How come there's nothing in writing about his work? How frustrating was that for you and find anything

Unknown: 28:34

that was so exasperating? It was just it drove me crazy. I thought, really? He couldn't write anything. Not a letter nada. No to Julius. Yes. I went through all of Julius Hesse's papers, because I thought, surely Martin Cooney put something in writing to Julius has no. But the thing that I never found, and I think it was probably just thrown out is he apparently did have a black book of all his patients that he kept. And one of the women who I interviewed, she was 95 at the time, and she's no longer living, but she clearly remembered seeing it. And there were references to it too. And I've no idea where it would have gone I looked through, you know, all the archives of people's wills because I thought maybe there was some reference there as to where it went. But a big part of the problem is because he did work in carnival settings and on Midways. These are not people who keep records.

Daphna: 29:37

Transient. Yeah, and it sounds like he was very good with his words. So surely, if he had written something down, it probably would have been quite valuable.

Unknown: 29:45

He was very Yes. And he apparently he spoke about seven different languages. He was very fluent.

Ben: 29:53

Yeah, because that's the other thing you wonder since he's not a doctor is even literate right? What's his background could But then in the book, you mentioned that no, he was very articulate spoke multiple languages. So he has no excuse.

Unknown: 30:06

No, I don't know why he didn't write anything, but he didn't. He gave a lot of interviews. And as I say in the interviews, also, when you start lining them up, you could see the story wobbles a little bit. And some of that would just be error on the part of the reporters and a deadline, but there was too much.

Ben: 30:25

I guess my last question about about Martin Cooney and then we can move on to other other topics of the book is that he he changed his name multiple times, to sound more and more sophisticated. He moved from town to town, depending on which place he had to put on the his one of his shows. And he clearly had this imposter. Imposter syndrome. Do you think he ever grew out of it?

Unknown: 30:50

Well, I don't know if it was a impostor syndrome or, you know, he was an entertainer, and most Jewish entertainers did change their names, so they would sound to your watch. So his name was Colin. And the fact that he changed that didn't surprise me going into it, I was pretty sure that Cooney wasn't a real name, you know, the first thing you can do is look on Ancestry and find nobody else has that name. His daughters, it just, it doesn't make sense. It doesn't make sense. It's not French, it's not German. There's no language where that name even registers. So I'm kind of not surprised that as a Jewish show, man, he changed his name. There was a lot of anti semitism at the time. And I think maybe he just kind of played around with what it was his brother was Kony also.

Ben: 31:45

But he did always up try to upstage himself, right, he gave himself the credentials. And he said that he had shows in Latin America. And he was always I mean, like you said,

Unknown: 31:53

Dan, chills, definitely that it was really fun to watch the credentials get more and more interesting as time went on. And he sets out here we gave an interview in I think, 1939, or 1940, where he was talking about his time at Paris maternity, which where he never was, you know, maybe inventing that incubator was more a matter of the heart and the head or something. It's like, yeah, because you weren't there.

Daphna: 32:19

You didn't do it.

Ben: 32:22

Because as a high school student that remember writing up my first CV, and you're looking for things to put on your head, and you just say, Oh, I'm just gonna say I know how to do Excel, you know, and then you see this guy, and he just keeps adding it on adding it on. It's so funny. Yeah.

Unknown: 32:35

Well know when he was fact checking.

Ben: 32:40

And it was difficult to check. If you were in Omaha, what happened in Germany?

Unknown: 32:44

I'd have no idea what was going on. And you know, during some of those years, we were at war with Germany, you're really going to try to find out whether he went to medical school there.

Daphna: 32:55

Well, I know that Ben particularly enjoyed the the historical perspectives. My favorite parts of the book were really the descriptions of the unit, obviously, and how they were interacting with the babies. But But I loved your interviews with the former preemies of the babies. Yeah, that's right. And throughout the book, you describe what those preemies kind of went off and did with their lives. They served in the war, they built businesses, they raised families they loved and they lost. Did you feel kind of that need to prove that Dr. Clunies work was kind of worth it, despite all the risks he was taking? Oh,

Unknown: 33:34

I don't know if I felt that I was just really interested in you know who these people were and that they were still around and more of them came forward after the book came out. I would give a reading and somebody in the audience would raise their hand and say, Oh, I was one of those babies. The oldest one I talked to was 98 years old. She was sharp as a tack. So I just found the stories really interesting. And every case, I was just hoping somebody would have more information about him. And even that, you know, that was sort of conflicting. Like I was curious, did he have a thick German accent and, you know, people who said Oh, their mother said he had an accent and other people's, you know, he didn't have an accent. And nobody really remembered even what he sounded like. But I was I was also from those babies trying to see if I could find out anything else about this guy. And what amazed me is that they had a lot more questions than I did. They really knew very little about them, and none of them had ever met another one of his patients. Well, we've had

Daphna: 34:39

some discussions recently with adults who are former preemies and it's just so interesting how everybody wants to know more about what their early years were like, especially if they're they're unique like that. I wonder did you like what Did you learn since the book has been published?

Unknown: 35:05

It's it's actually really been fun to see Dr. Cooney getting a little more recognition in the medical community among people who have read it, I think probably, in part because so much time has passed that it's not, you know. There's no harm in acknowledging somebody like that. One of the most interesting things also was a one talk I gave this man raised his hand at the end, and he was born in I think, 1941, toward the very end in there. He said, where he was born, there actually was an incubator at the hospital, but there was no health insurance. And his parents were given the choice of they said, you know, if you want, you could go to Coney Island, there's this show, and it would be free. And you could send your child there and there's no cost. If we keep him here, it's going to be extremely expensive. And his parents did what you think really, you know, loving parents would do, which is they pulled together every penny they had to keep their child in a hospital and not a sideshow. And he said he is has severe vision loss, and that he's always wondered if they had sent him to the sideshow. Would he be fully sighted? You know, there's no way of knowing

Ben: 36:24

which most likely he would have been right. William Silverman that you referenced in the book multiple times who was this neonatologist from Columbia Presbyterian, who was one of the Cooney buffs wrote a whole book on Retro lentil fiber pleasure and discuss the origins of it. And when basically, Dr. Cooney died and the incubators moved to the hospital, the oxygen started flowing. And and this is not something that had happened in the incubator shows. So I mean, you wonder, most likely, he probably would have had better vision. But could he would he have survived if he had horrible lung disease? That's another? That's another question.

Unknown: 36:59

You know, you really don't know. And Dr. Kony himself had absolutely no idea about the oxygen. You know, they asked he had no clue.

Ben: 37:08

No, it just didn't have enough. You probably would have used all the oxygen if you had more of it.

Unknown: 37:15

Now, but this is sort of, I also really had a hard time getting a hold of any but any surviving family member who remembered him and I finally did find the grand niece. And she was very reluctant to talk to me, I wrote her a letter for she didn't answer I called and she said, Oh, I'll call you back later. And but she finally invited me out to her home. And I really thought like, how am I going to raise this issue of like, I don't think he was a doctor. And I needn't have worried because she raised it. And that was another thing where she kind of said, Oh, if you did your homework, and he found out he was never a doctor, I won't dispute that. That was how she said it.

Ben: 37:55

Did she have any insights that surprised you?

Unknown: 38:01

I think in a way, she she had a little bit of mixed feelings like her parents, her father was a real doctor. And I think in a way, it was just kind of this odd like, oh, we have this show, man, like, why do you want to write about him? And and at the same time, she was kind of proud of him. It was both it was sort of like maybe that feeling, and the medical establishment to that, you know, it's a little tawdry, and yet at the same time, it it works. And it was important. So, yeah,

Ben: 38:34

it's interesting, because he was really, like we said, an advocate for preterm babies. And I'm wondering if you mentioned this in the book, and I'm wondering if this was more prevalent than you let on in the book where the families who had their babies in the incubator shows were quite ashamed of having the babies there. And at some point, you mentioned this, this woman, Beth Bernstein, who's, who criticized basically she was one of the incubated babies and her mother was being criticized. And you right, a lot of people expressed horror, how could you do that? Put your child on display like a freak. She said, No, my child is being saved by a genius of a man with incubators for all that but best mother was embarrassed at Coney Island. She was clearly grateful. But it seems that even though everybody was extremely grateful, they didn't really want to talk about it at all.

Unknown: 39:17

It was embarrassing. And but apparently I realized people just didn't talk about health conditions at all. You know, so if you had a miscarriage, you wouldn't talk about that either. If you had cancer, that would have been a secret. So you know, you had a preemie, and then your preemie is in a sideshow, really, you know. And so I think that was part of it. Like the people who were in the show, sometimes they didn't really even realize it because their parents didn't want to talk about it. It was kind of embarrassing. Now there were some where the parents thought it was just great. And Kathy Meyer said, you know, her parents thought it was terrific, but there were others were that's a hard call. You know if you had that now Yeah, you know if you had a preemie now and they said, Well, yes, you want to send your baby to a sideshow at Disney World? No, absolutely.

Daphna: 40:11

It makes you wonder so much medical innovation happened during that time. If there were other things kind of parallel to this, that that were happening, I don't know if you've come across any of that in other fields.

Unknown: 40:26

Yeah, I don't that I don't really know. Um,

Ben: 40:32

so, then, so then let me let me then ask you about the the actual location, right. I mean, he was doing these shows on on Broadway talks, amusement parks, and so on. And you wonder throughout the book is sticking with the fares hurting his overall message of the fact that these babies should be saved. And at some point in the book, I mean, you do talk about Alexander Lyon, who is the person who had design who was an engineer from France, who designed the incubators. And he had these sort of standalone shops in various towns in France, where people could pay 50 cents, and you could go see the babies, and they had one, actually from from France from Marseille, and I know he had one in my hometown, and he had a few and he was from from nice, but you wonder if Cooney was at some point, just going to ditch the fairs considering all the issues sometimes he had with having to share the fees with the the organizers of the fair. And he said he would put at some point, you mentioned that he was considering a permanent incubator show in Chicago with government help. And and then the book moves on, but I'm wondering if you found any inkling that he actually pursued that route of just moving away from the fairs and trying to create just a standalone place where he could just work year round.

Unknown: 41:43

Yeah, I couldn't let trail just seem to end and I think he probably couldn't pull it off. I think he he probably needed the foot traffic of the entire fare to make this thing work. Somebody who read the book said, you know, it's kind of like the first instance of medical crowdfunding in a way. So part of it was the care that he provided was actually very expensive. If you were going to pay for wet nurses, and you had a very high nurse, nurse to patient ratio. I would imagine a lot more was spent per baby than you would have had in a hospital. And so I think economically to make that work, you probably would have needed a lot of just general the foot traffic of the fair or the Midway rather than having it be a single destination.

Ben: 42:36

Right? You think people would not have gone out of their way to just see that but in the context of the fares they made it just have

Unknown: 42:41

Yeah, we are already there. And so here's this other thing you can do. Yeah.

Daphna: 42:47

Do you think it being part of like we say a sideshow or amusement park, do you think that prolonged the time that it took neonatology to hit the mainstream? Do you think it kept people from engaging in that kind of care?

Unknown: 43:03

Yeah, I don't know. There were so many other things going on at that time. So first of all, you had two world wars going on. And you also had this horrific eugenics movement. And you had this Dr. Harry Hazleton in Chicago, who was particularly advocating, deliberately withholding care for children who were going to be severely impaired. And the idea that they were going to be a drain on society, and they were taking away resources. And really, we're doing the right thing by letting this child die. And so in that context, I'm not sure that the fact that this was a sideshow. At that point, I actually think a lot of the medical establishment was just ignoring him. You know, whether if he had just gone away, would it? Would it have sped things up? I don't really think so. You know, and there was some documentation I found of doctors who saw the exhibit in Chicago, and they were saying, you know, that they really weren't even aware of him at that point.

Daphna: 44:10

That's interesting. I thought it was especially interesting that even when they started opening, like you call them the, the neonatal stations or you know, these early ICUs that he wouldn't even take his equipment you know, that he couldn't even give away nevertheless, cell leaders that he had that were had proven their benefit.

Unknown: 44:32

Yeah, and like I say, I still find that really hard to understand that they didn't want it but they were a lot of them I think we're just ignoring him at that point.

Ben: 44:45

Yeah, that's that's that's that was. Yeah, that was the most surprising and and you mentioned that in the book that he's doing the sideshows as the eugenics movement is is at the at the height of its of its momentum, and but you do mention that he's not saving baby Used to have lethal malformations, they were just a bit early and a bit smaller. And and it's an somehow it's a shame that they got lumped in as these sort of undesirables and yeah. And again, you wonder if again, if he had not been in those locations, meaning in amusement parks, if they would have removed a little bit of the stigma and taken away some of the fuel of the eugenics movement. That's something that I guess you're left to wonder.

Unknown: 45:28

But I will say So Julius Hass was fighting the same thing, though. Now. So he was I think it was 1922. He wrote his first book, he published a whole book about it. And he was still fighting for it. And as late as the 1930s, his nurse, who was Julie's has his nurse, who was really accomplished in her own right and did write several things that are archived said, you know, we're still fighting the perception that these children aren't worth saving. So I think that runs a little deeper than the idea that somebody was doing it as a side show.

Ben: 46:04

It is it is you're absolutely right. And it's funny because in this day and age, we're having the same discussion and reading the book feels very modern, because today, we've pushed the extremes of viability all the way down to now 2322 weeks, and this is the most on the most frequent ongoing discussion in the world of neonatology is, are these 22 weaker 23 weaker worth saving? Because they're going to be like, like, same arguments are coming back again, saying they're going to be a drain on society, what kind of quality of life can they have? And it was a good reminder for us reading this book that these arguments were being made by some some very nasty people.

Unknown: 46:42

anymore. Yeah. But then again, Silverman in the 70s wrote that book, and that was it. What was his his pseudonym was malcontent, I think, or something like that. But, but he was actually talking about is medicine being Is it becoming coercive? In other words, is it cruel that we are forcing these children survival? Yeah, I think

Ben: 47:10

he wrote, are you referring to his book? Where's the evidence? I think, Yes. Where's the evidence? Yeah. Yeah. And you do mention that in the book, I mean, you say, quote, he would wonder whether neonatal medicines enormous increase in technical power has allowed it to become coercive. And then you ask the question, when is it cruel to force a heart to beat? And that's a question that we ask ourselves every single day.

Daphna: 47:32

Yeah, not just in the in the preterm baby, right. We're having so much success in so many other pathologies and chromosomal disorders, and congenital heart disease, other, you know, genetic abnormalities, and, you know, in, in some places, we're taking that choice from parents also. And so, you know, the question is on both on both extremes, I think, sometimes especially even things like our, or our ability to, to transform congenital heart disease and to transplant babies, and in some institutions, you know, the choice for palliative care is being taken from parents also, even though those babies have have quite a hardship. So it's interesting, right, you know, which, which extreme? Do we fall someplace in the middle? It's, it's, it's tough, tough decisions. And I think it's very circular. We'll probably be having different iterations of this discussion in 10 years, and then 20 years. And that's right. So

Ben: 48:44

we're coming to the end of our interview, I have a few few more questions. But I guess the one I would like to close with is your your The reason your book is so good is because the research work that you've done is so thorough and so methodical, I am wondering if you have a place either online that you think people can go to, to see some of the videos that you mentioned, I mean, there's one video I wanted to ask you about it, which is that video of the nurse feeding the milk by the nose. I've seen pictures of this of these spoons being where the nurse feeds the milk through the nose into the mouth. You have these these tapes of interviews from Dr. Gardner. And I'm wondering if there's a repository somewhere that people can go to and check out some of these historical sort of archives. Today,

Unknown: 49:32

hmm, I don't have it yet. Maybe I should create it because I do have the I do have the interviews. Some of the interviews that I had were, they were tapes that were they were cassette tapes that Dr. Gardner had done in the 1960s and never transcribed. And they were falling apart. I spent hours just listening to them over and over and over again to get the transcriptions of those because they're hard to listen to And then others are mine. I could try to make those available somewhere and the American Academy of Pediatrics also was extremely helpful to me. So the the papers of the Cooney buffs specifically are archived at the American Academy of Pediatrics. And that is where I saw that film clip.

Ben: 50:24

Oh, okay. That's good to know. Because I know of Dr. Silverman's paper on Dr. Cooney that you mentioned in the book. But I didn't know if the rest of this stuff. Yeah, that's that's kind of good to know.

Unknown: 50:33

There is a little archive there. They were very helpful. I know they've moved since I went there, but they're still I think, somewhere in near Chicago. You know, Dr. Gertner, is still in California. And so he still has some of it. I have boxes of it. And I really should get in touch with maybe the the, you know, the American Academy of Pediatrics. Maybe they you know, I've saved it all? I have it. Yeah, no, the

Ben: 50:57

work, the work you've done is tremendous. And for like a deafness that I like medical history, and, and for every time I find a little gem, I tried to share it. And I know how hard it is to find these little gems, and you have so many of them.

Unknown: 51:10

Well, thank you so much. I really, really appreciate your very close reading of the book. Yeah.

Daphna: 51:16

Did you? Did you have a favorite interview? Well,

Unknown: 51:24

I am, I have really gotten to know Beth Allen, she was she's a lot of fun. And I spent a lot of time talking to her. And then also, you know, the woman whose story opens and closes the book, who's no longer living, but who really remember Dr. Cooney and she's also just wonderful. She, you know, she was just this radiant light, beautiful woman at the end of her life. And the fact that she could remember him when she was the only one who actually remembered him because she saw him again, when she was 19. That was first grade.

Ben: 51:58

And it must, it must feel like such a relief because you're writing the book at the beginning of the 21st century. And you feel like you've maybe missed out on so many potential interviews by

Unknown: 52:08

what it was like, I just kept thinking, Oh, why didn't I think of this tourney? Or I'd be in an archive. And I'd see somebody just died like 10 years ago. And it was amazing to find that Dr. Gardner had done these interviews with people in the 1960s and 70s. Who are gone. That was incredible.

Daphna: 52:28

Golden.

Unknown: 52:30

Yeah. And he was yeah, he was so helpful to me also, and just kind of helping me understand parts of the story that I wouldn't have been able to grasp otherwise.

Ben: 52:41

Yeah. And it's interesting how Dr. Quinton was able to bring all of us together and heavy this fascination that people helping each other, you know, sharing sharing their data, sharing their pictures, their movies, that's, that's, that's kind of cool.

Daphna: 52:56

Well, to that point, I feel like, you know, this book is different from your other books, but it's similar, in that you clearly love kind of history and stories that pass through kind of generations and passing along kind of spoken word. And, you know, where does that come from? And what should people look for in some of your other books?

Unknown: 53:18

Oh, that's a great question. Yeah, I guess it is generation. I don't know. My other books are really very different. One is memoir, which is The Secret Life of objects is basically my life story told it by in the objects that I've collected in my soul. And that one was fun to write that that was an easy book to write this book. And the others are the others are fiction. And as I say, the book that I've just completed, but it won't be ready for a while is there's a novella in it that takes place at that Chicago World's Fair that I was fascinated by.

Ben: 53:57

Okay, thank you. Last question I have for you as you publish the book, I think 2018. Yes. And and when did you just for the people to get a sense of how much work went into this book? When did you begin this journey?

Unknown: 54:12

Okay. Well, when I first started looking at that Chicago World's Fair, it was 2007. Now, I wasn't actively working on it all that time. It was just marinating in there. And I was collecting things here and there. So I would say the hard work of it started in 2014.

Ben: 54:30

Yeah, so that's, that's still Yeah.

Unknown: 54:33

It was still a lot. Yeah,

Daphna: 54:34

yeah. My my have one more question. And it's that at some point in time, did you say like, I'm not sure I could write this book.

Unknown: 54:43

Every day. Every day. There were days where I was just so mad. I'd spend all day looking for something and it wasn't there.

Daphna: 54:51

Well, that's, that's, I think, how many of us feel about the research we're doing so we thank you for giving us that encouragement that in No matter how long it takes that it's worth, it's worth the work. It's worth the journey.

Unknown: 55:05

Yeah. Well, thank you so much again, talking to you.

Ben: 55:10

Yeah, thank you for coming on the show. It was a pleasure. Again, I want to recommend your book, The Strange Case of Dr. Cooney, how an American showman, saved 1000s of American babies, you can pick it up everywhere, anywhere. It's on Amazon. It's so available on Kindle audible, you should definitely read it and check it out. Definitely. Thank you again.

Daphna: 55:28

Everybody. Have a great day. Thanks so much. Hi, thank you.

Ben: 55:32

Thank you for listening to this week's episode of the incubator. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcasts, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address the queue podcast@gmail.com. You can also message the show on Instagram or Twitter at NICU podcast. Personally, I am on Twitter at Dr. Nikhil spelled Dr. NICU. And Daphna is at Dr. Dafna MD. Thanks again for listening and see you next time. This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns, please see your primary care practitioner. Thank you