The future of pediatric development and disability
Physician and psychologist Heidi Feldman is a pioneer in the field of developmental behavioral pediatrics who says that the world’s understanding of childhood disability is changing and so too are the ways we approach it.
Where once institutionalization was common, today we find integrative, family-centered approaches, charting a more humane, hopeful path forward. For example, for children born prematurely with increased likelihood of disability, increasing skin-to-skin contact – what is called “kangaroo care” – can literally reshape that child’s brain development, she tells host Russ Altman on this episode of Stanford Engineering’s The Future of Everything podcast.
Transcript
[00:00:00] Russ Altman: This is Stanford Engineering's The Future of Everything, and I'm your host Russ Altman. I thought it would be good to revisit the original intent of this show. In 2017 when we started, we wanted to create a forum to dive into and discuss the motivations and the research that my colleagues do across the campus in science, technology, engineering, medicine, and other topics. Stanford University and all universities, for the most part, have a long history of doing important work that impacts the world, and it's a joy to share with you how this work is motivated by humans who are working hard to create a better future for everybody. In that spirit, I hope you will walk away from every episode with a deeper understanding of the work that's in progress here, and that you'll share it with your friends, family, neighbors, coworkers as well.
[00:00:47] Heidi Feldman: The community of stakeholders, including the physicians and the patients, can help us narrow in on whether or not our large language models are truly finding, you know, essential elements of care that are going to change outcome. So that's our ultimate, like if we follow these practice guidelines, can we show that, let's say individuals with attention deficit hyperactivity disorder, that's about ten percent of the population. So if we can make a big difference in how ten percent of the population is, is functioning in the world, we've made a big impact.
[00:01:23] Russ Altman: This is Stanford Engineering's The Future of Everything, and I'm your host, Russ Altman. If you're enjoying the show or if it's helped you in any way, pretty low bar, any way, please consider sharing it with friends, family, colleagues. Spreading the word is a way to grow the show, grow our audience, and improve it. Today, Heidi Feldman will tell us that our ability to diagnose developmental disorders in children, things like autism, attention deficit disorder, learning disorders, and others is being revolutionized. We're better at diagnosing and we're getting better at treatment. The key to treatment is personal contact with humans, family support and community support. It's the future of development and disability. Before we get started, a reminder to tell friends, neighbors, and colleagues, all about The Future of Everything. We want to grow the show, and word of mouth is the best way to do it.
[00:02:28] So when we think about disabilities in children, we might think about things like autism, attention deficit disorder, learning disorders, anxiety, and other things. And for many years these were not really handled very well. In fact, until the 1960s and 1970s, many children with disabilities were institutionalized where their outcomes were terrible. Starting in the sixties and working right through to the present time, we've improved our ability to understand how to diagnose these disorders more effectively. In some cases, we're understanding the causes in the brain for these disabilities, and our treatments are getting better. It is a pretty exciting time. And Heidi Feldman is a professor of pediatrics at Stanford University. She's an expert on preterm birth and its impacts on development, as well as a wide variety of developmental disorders, how to treat them, how to recognize them, and how to make sure that these kids have the best possible lives.
[00:03:26] Heidi, how did you decide to devote your work to childhood development and some of the associated disabilities?
[00:03:34] Heidi Feldman: Well, thank you first, um, for having me Russ. It's really an honor to be here. You know, I didn't start out thinking that I was going to be a physician who was interested in child development and disability. When I came along in the, um, last century, um, there wasn't really a field called developmental behavioral pediatrics. And I entered university thinking I was gonna go into education. But I didn't really find the coursework in, you know, inspiring or challenging. And so I shifted majors to psychology and I went on and got a PhD in psychology, in developmental psychology, but that didn't give me the access to like service and to clinical work that I thought would be really satisfying in my career. And I found my way to medical school after doing a PhD. So I actually have a PhD MD. And, um, in medical school, I was attracted to pediatrics. As I was finishing my pediatric training, the field of developmental behavioral pediatrics was just emerging as its own identified subspecialty. So the journal, uh, uh, the Journal of Developmental Behavioral Pediatrics first came out in like 1980. The society was formed in 1982, and I entered Fellowship in 1983. So I was,
[00:04:58] Russ Altman: So you were there at the beginning?
[00:05:00] Heidi Feldman: I was there at the beginning, yes. And then it's like just taken off since then. And this has been my passion, my calling. Since I found the field.
[00:05:10] Russ Altman: So for people who are not familiar with, uh, pediatric, uh, development and, uh, and behavior, give me a sense of what the field studies, why did it only, and so for most diseases, they've been with us forever. And so what was it about the world that this, uh, field emerged like a little bit late?
[00:05:29] Heidi Feldman: Yeah. Um, so disability has also been with us for a very, very long time, but it was sort of outside the realm of medicine. And it began to become part of medicine in about the seventeen hundreds, um, when, uh, there was a sense that we could help people with disabilities either through education or medication. And so that was like in the enlightenment period, in the late seventeen hundreds, early eighteen hundreds. But those doctors and educators oversold their claims. They thought that if they put children on, uh, mountaintops with fresh air and good food, um, education, that all of disability would disappear. And that those individuals would be able to return to work like everybody else. That didn't work out that way. And those mountaintop, um, educational centers became institutions. So then we had approximately a hundred to a hundred and fifty years of institutionalization of people with disabilities. So, that,
[00:06:33] Russ Altman: And I am old enough to remember that. Uh, I grew up in New York and as you probably are well aware, there was a number of scandals in New York in the 1970s.
[00:06:42] Heidi Feldman: Yes, that's right. Pennsylvania too. Um, so, um, so it was actually JFK, uh, President Kennedy, who you may remember, had a sister with developmental disabilities and mental health conditions. And, um, Eunice Kennedy Shriver had the courage to write about her in The Saturday Evening Post in 1962. That was shocking, you know, to reveal that this was a person in the family. And the following year, in 1963, John Kennedy signed legislation that set up community health centers for mental health and also, uh, facilities to train and create an infrastructure for caring for individuals with disabilities. And it's that trajectory that, um, you know, um,
[00:07:30] Russ Altman: Great. Yeah. Then you can lead to the 1980s. And so let me ask, when we think about, especially kids, 'cause you're a pediatrician, what are the disorders that are like, I know there's a long tail of many things, but what are the, the big players, the things that you see the most in your clinical practice as disabilities especially for young, for young people?
[00:07:49] Heidi Feldman: Yeah, good question. So, um, we see learning disabilities, attention deficit hyperactivity disorder. Recently we're seeing many, many children with autism. We see children with intellectual disability, um, and we see children with mild mental health conditions like anxiety, depression, oppositional behavior, things like that.
[00:08:12] Russ Altman: And, and, and are, um, you said for example, that, I think you said autism, the autism rates are going up. Is this because of better diagnosis or do we think that there's something going on that's increasing the, um, the rates of these disabilities?
[00:08:27] Heidi Feldman: You know, I think it's all of the above. So one thing is we change the diagnostic criteria in 2015. If you look at the old criteria and the new criteria, it's obvious that we're gonna capture more people with the new criteria because the thresholds have been, um, lowered. But there had been studies that took that into account and there is still a increasing rate of autism even when you kind of correct for the, um, difference in definition. So it's probably a combination of factors. I, I'm not sure you know what to attribute it to. You know, when we look strictly at genetics, we know that there are many, many genetic variants that lead or are associated with autism. It's not like one gene. So, I think the way to think about it is that there are some genetic circumstances that change a little bit about how children process the information coming to them and express the information that they want to express back, and it sets up a developmental course. And that developmental course ends with a condition we call autism. But there's wide, wide variation in the number and, and type of children that fall into that category.
[00:09:46] Russ Altman: Okay. So I wanna get, there's so many things here to follow up, but I, but I wanted to definitely ask because when I look at your scholarly publications, as you know, better than I, there's a lot about preterm birth. So that forces me to wonder, is preterm birth a part or one of the major causes for some, or is it associated with, uh, many of the diseases and disabilities that you just mentioned, or are these two separate interests of yours?
[00:10:11] Heidi Feldman: No, the, it, it is definitely a, um, a population that is, um, at risk or has a high likelihood of ending up with disabilities. It's, it's actually a great story, um, Russ, because,
[00:10:24] Russ Altman: Let's hear it. This is why we're here today. That's great.
[00:10:27] Heidi Feldman: So, um, you know, if you think about it, JFK, who we've already talked about, had a child born at thirty-four weeks gestation. That's about six weeks before term, and that baby didn't make it. And by the time that I came along in pediatrics in the late seventies and early eighties, taking care of a child at born at thirty-four weeks gestation was actually becoming quite, um, routine. Um, and that was because we learned how to provide the oxygen that babies need. So, um, so the, the big trick was that we took learnings from the Vietnam War about how to save, how to save soldiers on the battlefield. And we scaled it down to, um, to make ventilators that would work for little babies. It was the, the ventilators for adults were called the birds. And so the ventilators for the babies was called the baby birds.
[00:11:23] Russ Altman: Okay. Wow.
[00:11:24] Heidi Feldman: And we learned, we learned, we push oxygen in rather than try and create the more natural situation for breathing, which is negative pressure in the chest. So when we started pushing the oxygen in, called positive pressure ventilation, all of a sudden babies could survive infant respiratory distress syndrome. Once we had the babies living, um, we then could look at other organ systems and other conditions and like the whole field shifted. So, um, so now babies born even at twenty-eight weeks and twenty-seven and twenty-six weeks gestation are likely to survive a preterm birth.
[00:12:04] So that means that they're fully three to four months before their due date. And they're surviving, but they do survive with, um, challenges to many, many aspects of behavior, probably most aspects of behavior. So at the extreme, children may have cerebral palsy, which is a motor disability. They may fall in the category of intellectual disability, which means that they have trouble thinking and learning. They may have language disabilities, which is a lot of what I study. Um, they may have mental health conditions and they are at, um, increased risk of autism as well.
[00:12:41] Russ Altman: Okay.
[00:12:42] Heidi Feldman: So we just did an analysis of, um, the children who we see in the aftermath of preterm birth in our center here at Stanford, and we found that about twelve percent of children have a high likelihood of having autism. We haven't taken them all the way to diagnosis, but they're having a positive result on a screening test. And, and it's regardless of what their, um, socioeconomic status is, it's actually, uh, regardless of gender. Um, and it's regardless of the medical conditions that they experience, um, during their preterm, you know, to, in the aftermath of the preterm birth during hospitalization. So maybe that, uh, need to live in the hospital for your first two, three, four months of life, all the noise, the absence of a caring parent, lots of pricks and pokes and pain, maybe that combination is what sets children on a track toward autism, not something specific about medical conditions or genetics.
[00:13:53] Russ Altman: And, and is it a similar story? So autism was a big one that you mentioned, but you also mentioned attention deficit and many others. Is it a similar story for those where the risks are, are higher, um, and we're trying to figure out the kind of interaction between nature and nurture?
[00:14:09] Heidi Feldman: Absolutely. Um, so, and, and that's exactly where my research sits. Okay, how much can we think about as nature? How much can we think about as nurture? So one good example is I, I like to study the brain. It's just fascinating. Um, and we have focused on white matter connections in the brain. So if you think about it, you know, early in my career everybody was interested in the brain cells. Like you can think about them like the computers. But in about the year 2000 people started thinking like, hmm, maybe the connections or the circuits that bring brain cells together could also have a role to play in outcome. So that's the space that I've been working with. What about these connections?
[00:14:54] The fun thing about studying connections is we know they're responsive to the environment. So, you know, there's a very famous study. It's the juggling study. So most people don't know how to juggle. So if you teach people how to juggle, you can be pretty sure that they never juggled before, and now they juggle and you can see how the brain changed. And there is a little bit of change in the gray matter of the brain, the, the nerve cells. But there's a lot of change in the connections, um, among brain cells or the white matter of the brain, the circuits. So that's the area that I've been studying. And we see that, we know that, um, the white matter of the brain in children born preterm is very vulnerable to injury and also to dis-maturity.
[00:15:40] So when you follow those children out, as I've done, even in adolescence and to adulthood, the circuitry is a little different. It's a little, um. It's just off compared to the circuits on healthy comparison groups. Um, and in certain, in certain situations, the differences in the white matter, um, relates to the, the outcomes, the developmental outcomes of those children when they reach, um, adolescents and adulthood. In some cases, the prediction that white matter would matter is lost in that group of preterms. So, okay. So is the white matter affected just by being in the nursery or whatever? And can we change it? So I can tell you some,
[00:16:31] Russ Altman: Right. Because, of course, as a physician you want treatments. You wanna alter the course for the, for the, for the person.
[00:16:37] Heidi Feldman: Exactly. Like we're okay if people have disabilities, we can support them, but if we can prevent them, isn't that a better situation? So here's, here's some really recent data, Russ. We, um, have a technique in the nursery called Kangaroo Care, and that's when the preterm baby is taken, you know, down to just a diaper and laid on a parent, often a mother's chest. So it's skin to skin contact. And this,
[00:17:09] Russ Altman: Yes, I saw some papers about skin to skin. They looked fascinating, so thank you. Tell me more.
[00:17:15] Heidi Feldman: Yeah, so skin to skin contact was developed in Columbia. The country, Columbia, um, in the late 1970s because they didn't have incubators to keep babies warm. And so if you keep a baby's skin to skin with a parent, that baby, at least half that baby is at body temperature, right? 'Cause it's skin to skin. And then you could put a blanket around the backside so that that side stays warm too. Originally Kangaroo Care the baby just kind of stayed on the mother as long as possible. In, in our nurseries these days, um, we try and replicate that, but we don't try for a full day.
[00:17:55] We try and take moments of the day and put the baby skin to skin, like maybe an hour at a time. And that has a lot of advantages besides keeping the baby warm. It settles the baby. We think it helps with the autonomic nervous system, you know, the nervous system that's activated during relaxation. Um, we know that babies grow faster, they have better cardiovascular, um, measurements when you've put them, um, on the parent's chest. And they also, this is some of our data, is that they then do better developmentally when they reach, you know, one and a half to two years of age. So this experience in the nursery of being on a parent's chest and all that, that entails, you know, all of the comfort, relaxation, warmth, et cetera. That, that entails seems to have a positive impact on the baby's,
[00:18:58] Russ Altman: Sure. And the inference is that this is literally, uh, impacting their brain development. Like this is not, this is not like too hard to understand. This is going right to the brain and you're seeing differences.
[00:19:10] Heidi Feldman: And we have some data that children who receive more skin to skin contact have somewhat different circuits than the babies who receive less skin to skin contact.
[00:19:22] Russ Altman: And of course, anybody who's been a parent knows the joy of that experience of having your baby on your chest. I mean this, it's funny that, that it was finally recognized and codified in Columbia because you could also argue that humans have been doing this instinctually for hundreds of thousands of years.
[00:19:40] Heidi Feldman: Right. But you know that that power of human touch that we know and we feel came in contact with technological medicine, you know? And so we had to recognize that the technology of putting kids in a hot box, which is an incubator isn't as successful as the old-fashioned contact, um, of, you know, an intimacy with the baby.
[00:20:08] Russ Altman: Yeah. Be careful what you think is not important and what is important.
[00:20:12] Heidi Feldman: That's right. And, and what you're willing to give up because you think that, you know, somehow we're advancing, right? So, so what I keep saying in my work is, yes, we wanna push forward the frontiers of knowledge, but we wanna preserve the frontiers of knowledge that we have, um, as we still move forward. And I think this is a really good example.
[00:20:34] Russ Altman: This is The Future of Everything with Russ Altman. More with Heidi Feldman next. Welcome back to The Future of Everything. I'm Russ Altman and I'm speaking with Heidi Feldman from Stanford University. In the last segment, we had a good review of the kinds of disorders that young people, children can experience because of developmental problems. We also learned how the underlying causes are being investigated, some of the brain changes that we're able to observe, and we got a little bit into some of the treatments that are emerging, most importantly, personal human contact. Nice and simple. In this section, we're gonna talk about how these disabled kids can be supported by their family and by their communities, and we're also gonna talk about the broader benefits that accrue to everyone when we take good care of these patients.
[00:21:30] I, I wanted to ask a more broad question. As a physician, you look at a patient and you're thinking about the entire support system for that, for that patient. What's the family life like? What's the community life like? What is the status as you look at it now, of our ability to take care of these patients in appropriate ways?
[00:21:49] Heidi Feldman: I, I think we've made such giant progress in the last few decades in the care of people with disabilities. You know, in, in the early part of my career, physicians were still going to parents and suggesting that a child with a disability, an obvious disability at birth, such as down syndrome or spina bifida, be put in an institution. And now families would never consider that. You know, we think every child deserves a home, a real family home. And once you take children and raise them in family homes, guess what? They do so much better than they do in institutional care. And they can really participate fully in many, many different aspects of community life. One of which is school. And so, you know, again, we used to have an idea that for children who had different kinds of learning needs, we had to put them into special classes or special buildings and often, you know, in the basement or down the street.
[00:22:47] And we've learned over the last several years that we can actually bring children with disabilities into our regular classrooms with, you know, um, typically developing children and everybody benefits. The children with a disability benefit from role models and education that they can often grab onto and enjoy at their level. And the children who would have been in that general education classroom learn to appreciate the diversity of human beings. They learn to be generous, they learn to be supportive, and it's really quite a meaningful classroom experience. And then of course there's also things out in the community like sport, religion, um, you know, recreation of all kinds. And the more that children with disabilities participate, the more meaningful it is to them and to the whole community.
[00:23:37] Russ Altman: And, and, and I know this is not primarily about money, but I'm gonna guess that the cost of their care, it, um, goes down when they've been raised in these more integrated situations. Is that true?
[00:23:49] Heidi Feldman: Absolutely. Absolutely. The care of a child in an institution is really quite expensive. Uh, families are absorbing a lot of that expense when they raise the child at home. And that's why some governmental benefits, you know, befall them because that allows them to keep the child at home. But if we do a good job, Russ, if we educate children in inclusive situations and we support them, they're likely to have, um, occupation when they, when they come to the end of their education. And guess what? They pay taxes. You know, so, they pay back in, you know? And, and, and, um, one of my colleagues used to say, my success as a doctor is if my patients pay taxes.
[00:24:33] Russ Altman: Yeah, I, I said that about my child rearing. Uh, but we, but that's a separate issue, uh, and, and as far as I know, all of my children are currently paying taxes. Uh, so, so that's an exciting vision and it, it, it implies that there's knock on benefits to families, but also to the community and to society in general in just the way that you described. So, um, tell me, how do your patients, um, how, how do they grow up and, and what are the, and, and how do you facilitate, by the way, do they not become your patients when they, when they're eighteen or are these lifelong relationships?
[00:25:06] Heidi Feldman: You know, we typically try and find, um, adult physicians for, for individuals with disabilities or chronic health conditions because there are a lot of things we don't usually do tremendously in pediatrics, like sexual health and things like that. So it's really good to have an adult, um, physician to receive, uh, a patient with a disability. We've been able to do that in certain fields where there's a designated, um, uh, adult physician on the other side, like individuals with, uh, cystic fibrosis end up with adult pulmonologists these days. Or, or children with congenital heart disease end up with, um, adult cardiologists. We don't have like a one-on-one match to hand off the broad range of individuals with disabilities. So there are family doctors who take on that responsibility and that is awesome. Some internists take on that responsibility. Some psychiatrists,
[00:26:07] Russ Altman: You know, I was just gonna say, I was trained as an internist and I'm embarrassed about the, uh, the small amount in my curriculum, you know, thirty, forty years ago, that I was trained for the special health challenges that a disabled person might present. And so I, I'm, I'm, I guess I'm asking, it sounds like it's going a little better and they've created a little subspecialty.
[00:26:26] Heidi Feldman: Well. I think we have room to move in that direction. I think, um, within, you know, certain areas we've done better than others. Um, I think generally for, um, individuals with, let's say intellectual disability, we need to find a field where those individuals will be well cared for. Um, you know, at part, in part of my career, there was a real, um, uh, push to train people in both pediatrics and medicine. They were called, uh, Med-Peds programs, and I had, I had students who ended up in Med-Peds programs so that they could take care of lifespan issues for people with disabilities. That, that trend has kind of gone a little bit, I think, uh, by the by, but I think that is a really good model and family medicine is a good model.
[00:27:12] Russ Altman: So this issue that you've mentioned about ensuring that the quality of care, both when they're your patients and as you hand them off, I know you've been doing work, it's a little bit surprising, with AI to help with the assessment of quality of care. That might find, people might find that surprising. So what is the potential of AI to help in quality of care for, for these patients and really for that matter, for any patient?
[00:27:36] Heidi Feldman: Yeah, thank you for that question. So, um, in the care of, of children with disabilities to make sure that the care is comprehensive but not excessive, we put together, um, practice guidelines. And then, you know, we try and see whether physicians can, um, follow those practice guidelines, at least to a large extent. The problem is, is that our electronic health record isn't so good at, um, documenting whether people are following the practice guidelines. So we have to come up with some creative techniques. Um, and one creative technique is to go into the free text of the electronic health record.
[00:28:21] Russ Altman: This is where the doctor writes their note, for example. Like, I saw the patient, I'm worried about this, this looks okay, whatever.
[00:28:28] Heidi Feldman: Yeah. The chief concern, the recommendations, the impressions, et cetera. It's, it's just text. And so, um, I've been working with a, a physician named Yahir Bennett, and he had the idea, well, if we could use a large language model to pull out key information about how the physician was addressing the care of the patient, then we could determine whether the quality of care, you know, the following of the practice guidelines has been honored. And this is a,
[00:28:57] Russ Altman: And then maybe provide some loving feedback if it hasn't been.
[00:29:01] Heidi Feldman: Loving feedback. Right. Quality, you know, continuous quality improvement. And, um, and also, you know, we can do that these days with some family members and some physicians by helping us so that we, um, separate the wheat from the chaff in this effort, right? We are not gonna be interested in whether they do something that's minuscule but not very impactful. But the, the community of stakeholders, including the physicians and the patients, can help us narrow in on whether or not our large language models are truly finding, you know, essential elements of care that are gonna change outcome. So that's our ultimate, like if we follow these practice guidelines, can we show that, let's say individuals with attention deficit hyperactivity disorder, that's about ten percent of the population. So if we can make a big difference in how ten percent of the population is, is functioning in the world, we've made a big impact.
[00:29:59] Russ Altman: Right. Right.
[00:29:59] Heidi Feldman: And that's the, that's the domain where we're using the large language models in the current time.
[00:30:04] Russ Altman: And, and how, just to finish up in our last few seconds, how does it look? Is, is AI doing a good job? Or, or we, do we have a long way to go?
[00:30:12] Heidi Feldman: Um, it's actually, you know, we, we have to keep up with AI in this, in, in some ways, right?
[00:30:17] Russ Altman: Rapidly evolving.
[00:30:18] Heidi Feldman: It's constantly changing, right? Um, the, the newer models are doing a good job for us in helping us pull out the relevant information from this free text. And I wanna just say one other thing. The physicians are generally doing a very good job too. They're generally following practice guidelines and, you know, we can now determine when maybe there is some, uh, wiggle waggle in the, in following those guidelines and see whether that variation is driven by the patients or that variation is just random. And so that puts us in a really good position to offer really high-quality care to the children with disabilities and their entire families.
[00:31:00] Russ Altman: Thanks to Heidi Feldman. That was the future of development and disability. Thank you for tuning into this episode. Don't forget we have more than 250 episodes in our back catalog. You can listen to them all day if you want to. If you're enjoying the show, please remember to review it and rate it. We like to get 5.0 if we deserve it. You can connect with me on many social media @RBAltman and @RustBAltman, social media such as LinkedIn, Threads, Bluesky, and Mastodon. You can also follow Stanford Engineering @StanfordSchoolofEngineering or @StanfordENG.
