Transcript - Episode 10: Natalie Maitre

Transcript

Jen Lyman:

Welcome to Cerebral Palsy Health. Conversations that count with experts who care. And on today's episode, I'll be talking with Dr. Nathalie Maitre, neonatologist, researcher extraordinaire. We'll be talking about early intervention, how babies learn, what parents can do to help their babies who may be at risk for cerebral palsy or who have a diagnosis for cerebral palsy. We'll also hear about her work leading our Early Detection Intervention Network and so much more. I'm so excited to have Nathalie on the podcast today, and I'm really looking forward to this being a conversation that counts with an expert who cares. And I am your host, Jen Lyman.

Dr. Nathalie Maitre is a practicing clinician and NIH-funded neuroscientist with a focus on neurodevelopment in high-risk newborns and developmental interventions after neural injury. She is the Director of Early Development and Cerebral Palsy Research at Emory University School of Medicine and Children's Healthcare of Atlanta. She's the co-PI with Rachel Byrne of the Cerebral Palsy Foundation-funded US Early Detection and Intervention Network, and the Strategic Officer of the Georgia Alliance for Cerebral Palsy. Dr. Maitre is a member of the International Impact for Cerebral Palsy Work Group and has developed caregiver-based motor learning programs for UNICEF and the World Health Organization. She is also the mother of a teenage son with cerebral palsy. And there is so much more to her bio, and I'll include all of that in the show notes, but I'd rather you all hear it from her and read her bio later. So welcome, Nathalie. Thank you so much for being on the show today.

Dr. Nathalie Maitre:
Thank you, Jen. It's so kind of you to have me here. I'm excited.

Jen Lyman:
I know. And I'm just thrilled to have you here, and you and I have talked about this quite a bit, so I really am. And there's so much I don't know about you, so first let's start out, I really want to know how you became interested in this field.

Dr. Nathalie Maitre:
So honestly, I think like a lot of parents, my children saved me from being a horrible, selfish person probably. I would say that the person ... and like I said, I mean it with no disrespect ... who inspired me to start on a totally different journey from what I had planned was my son, Leo. At the time, he was 27 weeks, had been born extremely preterm with a massive brain bleed. We were in the NICU and I was already a pediatric resident, and I knew I was going to go into pediatrics and I wanted to do neonatology.

Jen Lyman:
Did you really? Oh my gosh.

Dr. Nathalie Maitre:
Oh, yeah. I already knew. The fact that I was able to stand three months in the NICU and still love it afterwards, I knew I was doing the right thing. But it became very clear that everything that mattered ... from the NICU transitioning to outside to home, to everything that happened afterwards that I started realizing ... made a huge difference. Saving someone's life is huge, but actually holding their hand so that they're not alone on the path ahead, it's really hard and it's really meaningful. I was going to be a cancer researcher before that, and then I started realizing that children and their families ... if they could partner well with healthcare teams and with entire communities ... could change the trajectories of these children, but also of these very families, right? When you change the trajectory of a child very early on because you've supported their family, then it's their entire family that you're supporting. And that suddenly became really meaningful.

Jen Lyman:
Right.

Dr. Nathalie Maitre:
So I had to go back to school. My mom thought I was never going to be done.

Jen Lyman:
So you had your PhD, and you were a molecular bioengineer? What was it in?

Dr. Nathalie Maitre:
I was a molecular immunologist.

Jen Lyman:
Immunologist, thank you.

Dr. Nathalie Maitre:
Yeah. I had done a post-doc in cancer research. I thought I was going to take care of children with cancer. I started falling in love with neonatology, and then everything changed.

Jen Lyman:
So tell me where Leo is today. How is he doing? What's going on with him? Would he be horrified that his mom is talking about him right now?

Dr. Nathalie Maitre:
Well, he's not used to it. Yeah. I don't do a ton of talking about him, mainly because if he wants to talk about himself, he can. He's a teenager, and so I try to respect his wishes. Also, he is now 19 and he is in college. He is studying to be ... Oh, for goodness sake, he's trying to get a dual degree in physics and aerospace engineering.

Jen Lyman:
So he takes after his mom is what I'm hearing?

Dr. Nathalie Maitre:
I did tell him when I was 10 years old, I became convinced I was going to be an astronaut, so the apple does not fall that far from the tree.

Jen Lyman:
Right.

Dr. Nathalie Maitre:
But no, I think the most important thing is that Leo got a little brother, Lucas. And remember, I told you that for me, family is what's most important. And so I think the most important thing in Leo's life, the most important influence, is his family. That's me and his brother, but also his dad who lives in San Francisco, his grandparents ... at whose house I am right now.

Jen Lyman:
Yeah, yeah.

Dr. Nathalie Maitre:
And his cousins and everyone else. Family changes everything.

Jen Lyman:
Yeah. I could not agree with you more. I can tell you that that is absolutely the case in our household as well. And Bower, he would tell you that his best friend is my mom, who he FaceTimes pretty much every day and wakes up in the morning asking to talk about.

Dr. Nathalie Maitre:
Same here! I can't believe.

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
Leo, his best friend is his grandma.

Jen Lyman:
Yeah, same.

Dr. Nathalie Maitre:
That's my mom.

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
I think it must be easier for him to be close to her than close to me, probably.

Jen Lyman:
It's truly remarkable. From the very beginning. I remember when he was little bitty and we were living in North Carolina, and he was in the NICU in North Carolina, I don't know how fast they drove up there when we were in the hospital, but they made it up there. And from that moment on, they've been attached to the hip and it's been such an amazing relationship. But yeah, the cousins. I think that is the most important thing. They've been part of everything and all of the things we've been through. And Bauer's a year younger than Leo. He just turned 18, so it's pretty cool that we've got that in common.

Dr. Nathalie Maitre:
Yeah. That is why to me, everything I do ... whether it's clinical care or research or advocacy, or trying to change the world, really ... it doesn't happen without families. What is the point of devising an approach, a strategy to care, an intervention, if families are not part of it?

Jen Lyman:
Exactly. Exactly. And looking at it, you can recognize when you are devising it, "What is practical?" and, "What are families actually going to do?" and, "Is it going to work in the real world?" versus, "What's in a test tube perhaps?" or, "What's too clinical?" and, "Is how practical could it be?" Well, I'd like for you to talk a little bit about your work with ... and actually I've heard this is a good story, so maybe you can tell this story too ... how you got this Early Detection Intervention Network started and where it is today. Because I think it's really cool, and nobody ever talks about it. And I think it's something that we should be highlighting more of because it's pretty impressive work, and you've been integral to it, and you're the founder of it. So I'd love for you to talk a little bit about it.

Dr. Nathalie Maitre:
Boy. Well, that's really nice. But I think anything I did ... and we'll talk about Rachel throughout that because everything I did, I did I with her. I'm really proud to say that every single thing I've accomplished in my career, I've done with help. I've not done any of it alone.

Jen Lyman:
Yeah.
Dr. Nathalie Maitre:
So it started in 2014. The amazing Dr. Iona Novak invited me ... I was a young assistant professor and I had just started banging against doors to try to get funding and publish some papers on early detection and CP and all these things. And she invited me to this thing that changed my life, the Impact for CP Summit in Vienna, at which she had these luminaries, and parents and other people, who were working on guidelines for early detection for cerebral palsy. There was no way I was going to say no. I didn't care how jetlagged I was. I didn't care that I only got to see the inside of a hotel for three days in Vienna of all places. I was going. So I went there. I was totally intimidated because we're talking ... There was Giovanni Cioni and Roslyn Boyd and Iona Novak, and Linda de Vries, and all these people. I'd read their work and they're all there. I'm feeling completely out of place, but so honored and excited.
And together, we put together these guidelines for what best practice is in early detection for cerebral palsy. Really, it was a systematic review of the literature that was also with stakeholder voices that were incorporated into it. But as I'm listening to this, I went home and I was all fired up. I got home and six months later, the guidelines aren't done, they're not published, and I know they're there. It was difficult to publish something like this and so much work. But I couldn't wait because I knew what they were. And I was like, "There is just no way that we can't make this happen into practice." So then, I started thinking, "All right, the first thing I need to do is figure out how to develop a real, rigorous training workshop for the Hammersmith Infant Neurological Exam," because it didn't exist anywhere. It was only a research tool, and it was used by some incredible clinicians across Europe. But I was like, "It's best practice," so developed that, tried it out, invited Andrea Guzzetta from Italy, who was a fabulous teacher.
We started with just implementing a tiny piece and I wasn't satisfied. I was like, "If we can do one piece, we can do the whole thing." So I was at Nationwide Children's at the time, and I was really fortunate to have an incredible team of people who were working with me, clinicians and researchers, who all thought, "We can do this in this high-risk infant follow-up program," sometimes called the NICU follow-up program, "and we can do it." So I did that, and I'm like, "This works!" We managed to decrease the age of CP, which was above three at the time, to way below two. I managed, I think, 13 or 15 months the first time I tried this. So then I go to the ACPDM, and I'm thinking, "No one's going to listen to this."
Again, Iona Novak ... amazing, amazing sponsor to young faculty that she is ... invites me to present with Gary Noritz and some others. And I didn't know this, but in the room is Rachel Byrne, and she's listening to me. She's at the Cerebral Palsy Foundation, and the CEO at the time heard from her and she's like, "We need to talk." So she meet with me and him, and we're tossing around this idea of the conference. A conference centered entirely on the early years of cerebral palsy. And I'm like, "Oh, we can do it at my hospital," thinking that's going to be easy. Rachel's like, "Oh, absolutely," and I was thinking, "This person gets me because I'm just throwing these ideas out there and she's actually bringing ideas that are bigger." And I told her what I'd done at Nationwide Children's, about the early detection guidelines. She wanted to know more.
She comes to visit Nationwide Children's with the CEO at the time of the CPF, and she spends all her time looking at my clinic talking to me. And then, she says, "I don't think you're thinking big enough," and I said, "Well, if you want more than a HINE workshop, we could do HINE training all over." And she's like, "No. Aim bigger than that, Nathalie." And I'm like, "You're talking early detection." She's like, "Yeah, I think we need a network." And I was like, "Okay." So she's like, "Could you scale up what you did?" And before I can say yes, she's like, "Yes, I think you can."

Jen Lyman:
And that's why we love Rachel.

Dr. Nathalie Maitre:
And it was just sort of this incredible moment of meeting someone who, no matter how big I could think, she could think bigger. She never thought something is impossible. And I guess for me ... not just as a researcher and a clinician, but as an implementer and as a parent ... it was a dream meeting. Because when you meet someone who believes in what you're doing, that's important. But when you meet someone who thinks like you, that nothing is impossible, that it just might take a little bit longer or more resources than we thought, it's this incredible moment to find someone who's your partner in all the work that you do.
Because like I said, in parenthood and in everything we do, we're always hoping to not be alone, or at least I am. I really enjoy working in teams. And she's definitely the yin to my yang, as brash and goal-directed as I can be, and "Now, now, now. Do it." Outside the box, I've got Rachel, who is the consummate team leader. She always knows how to balance and moderate, and in the nicest way, pushed me to think even further. It's been really great, so that's what started it all.

Jen Lyman:
This relationship between you and Rachel is special, and I'm not exactly sure how many hospitals we now have in this network.

Dr. Nathalie Maitre:
Oh, so we started out with just five.

Jen Lyman:
Yes, just five. Just five.

Dr. Nathalie Maitre:
Well, yeah. But the great thing is some of these hospitals are connected. We started off in Houston, Texas, when the amazing Andrea Duncan ... Andie Duncan who's now at CHOP ... when she was there, and I was like, "Andie, you can do this." She's like, "I don't even have a developmental follow-up program, so my numbers are all zero and the worst, Nathalie." I'm like, "Yeah, but you can build one." She's like, "Yeah, I can build one." So some of our sites literally started from nothing. Others had incredibly full scientific and clinical programs. I think of Utah and KKI. And so it was really neat because we started at all levels. We had Utah, which was super rural in many ways. And I didn't realize until I went to Salt Lake City ... I was talking to them and they're like, "Oh, some of our patients drive 10 hours from Wyoming to come see us. And during the winter in the mountains, they can't even access us."

Jen Lyman:
Wow.

Dr. Nathalie Maitre:
"So when you think about implementation, you got to think about that too," and I was like, "Oh." Yeah. And then Baltimore, they were like, "We work in a really urban, not very wealthy area to say the least, and not always very safe. And we have to think about those things." And then there was UCLA. But Andie Duncan in Texas connected me to the NEON Collaborative. They have a big collaborative of all the neonatal follow-up people. So then, we started working on a collective level. And UCLA, they're connected to California Children's Services. And there's the amazing Eileen Fowler-

Jen Lyman:
Of course.

Dr. Nathalie Maitre:
Sai Iyer. And Sherie is also there, she's totally cool. So we started expanding and our work started leaking into networks.

Jen Lyman:
Yes.

Dr. Nathalie Maitre:
And then, some sites left and some sites joined. And now, I think we're at eight sites. And then, Rachel's like, "So this is not big enough. I think we need to do the whole country."

Jen Lyman:
Exactly. I was about to go there.

Dr. Nathalie Maitre:
I was like, "Really? Can we do that?" She's like, "Yes, yes. We can do that." I'm like, "Okay, let's do it." And so that's when she's like, "We're going to work in Ireland. We have this amazing opportunity and all this buy-in, and it's going to be a completely different system." But when you think about Utah, and where I am now, Atlanta, and Baltimore and all these places, the United States is all these individual countries.

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
And so I thought, "Well, why not?"

Jen Lyman:
You can do Ireland. It's going to happen.

Dr. Nathalie Maitre:
And so that's been so cool.

Jen Lyman:
Yeah, this is so exciting. It's really neat. And you've published. And the national average of diagnosis has been reduced even further through the network, so I think it's down to less than nine-and-a-half months, which is a big deal. So let's get into that a little bit. Why is it important for an early diagnosis of cerebral palsy? Can you help us understand that a little bit better?

Dr. Nathalie Maitre:
Sure. Well, there are two main reasons. There's families and then there's the fact that we want to change the trajectory of a child, so that's interventions. So we detect to intervene, and we detect to support families. There's a lot of research that shows that families lose trust in the medical system. Families have issues of all sorts of things, ...from physical to mental health and behavioral health ... when they know that someone is hiding something from them, a diagnosis, or they have fears and suspicions that are not being validated.

Jen Lyman:
Right.
Dr. Nathalie Maitre:
So I think from a family standpoint, an early diagnosis ... or at least early conversations, and we can talk a little bit about what high risk for CP designation means ... but an early diagnosis helps a parent start to be empowered and proactive. And to not tell a family that you suspect this is, to a certain extent ... there are different ways of calling that, but for me, it goes against basic ethical principles, which is respect for autonomy. When we respect the autonomy of a family, we owe them what our information is on what's going on. And I know that the reluctance is really centered with the very best of intentions on protecting families. There's this misconception that if you tell a family that you suspect it might be cerebral palsy that their child has, then somehow you're giving them some very bad news that could hurt them, or that you are not sure and you could be worrying them for nothing.
But it comes from this desire to protect, except that's not our job. Our job, as clinicians, is simply to support the family, to respect their autonomy. And if we feel like they need more to have the capacity to deal with this, to provide them with what they need to cope and to bounce back even more resilient from it. So there's that whole family aspect. We have a lot of information. We know how to make a diagnosis. We have this cool clinical designation of high risk for CP that's been adopted across all of North America ... hundreds of providers have signed on to this ... that allows us to talk about it, use the words "cerebral palsy," acknowledge that we have a lot of information, but we're missing something. We could be wrong, and that's okay. We are only positions, right? We are not a higher power.

Jen Lyman:
By giving that designation, does that allow families to get services that they might need as a result? It was always my understanding that people couldn't get services until they had a diagnosis.

Dr. Nathalie Maitre:
That is correct.

Jen Lyman:
Okay.

Dr. Nathalie Maitre:
That is correct. So what you have to do is do it very carefully. You're giving a designation because of some reasons that, by the way, are impairing function on some level. It could be excessive tone spasticity that's starting. It could be a motor delay that is actually a motor impairment waiting to happen. But there are ways to use the right, correct, and compliant diagnoses code at the same time as we give that designation of high risk that allow a child to obtain services. Now, maybe not CP-specific services yet, but to start a conversation, get the right diagnostic exams and referrals that we need, and to get some services. And to not blindside the parents at the next conversation and saying, "I was worried that your child might have cerebral palsy, so remember we ordered that MRI? Well, I've got confirmation of this." No. No, that's not fair, right?

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
That's not fair. If you suspect, you owe it to them to share that. And it's okay to be wrong. I mean, I love being wrong.

Jen Lyman:

Right. Exactly.

Dr. Nathalie Maitre:
I'll talk to my families in the clinic and I'll be like, "Right now, we did a Hammersmith Infant Neurological Exam, a general movement's assessment, and we also did an Ames. All three," and I explain what they are, point to the fact that, "Your child likely has cerebral palsy. The clinical history fits, but I am missing some neuroimaging. And the reason I need to get it is because I could be more certain of what your diagnosis is. I definitely want to refer you for a genetic consultation because we now know that there's so much that's involved there. And I don't want to blindside you. I could be wrong. It could be something else. It could be a motor delay. It could be something completely different. But this is what I'm thinking. This is my thought process. Now how do you feel about this and about me getting these tests?"
And I wouldn't say it exactly that way because we have more time, but it's really important to start those conversations. Because if you maintain trust of the family, then they are more likely to come when their child needs the care every child needs, by the way, because children are children. They are developing organisms before they are a diagnosis.

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
I want those families to come back to me and say, "Hey, my kid's having growing pains," or, "Hey, I'm kind of concerned because they're banging their head." Yes, I will talk to you about that too. "Can I talk to you about brushing their teeth?"

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
Yes, you can. And I want you to talk to me about that because if I cannot talk to you about CP and about those things, if you can't maintain your trust in me, then how are you going to then bring up the fact that you think your two-year-old may have a cavity, and I need to talk to you about a dentist actually.

Jen Lyman:
Yeah, exactly. Exactly. Well, it makes all the sense.

Dr. Nathalie Maitre:
That's the first part. The second is interventions.

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
And you know that I design interventions. I have the utmost respect for this vast community of researchers across the world who are constantly pushing the envelope and developing new interventions earlier. Everything from basic science to nanotechnology, to TMS to stem cells, to everything. And to our incredible therapist researchers and psychologists, among others. I can't even name every single type of researcher that works in the field of cerebral palsy. But we're part of this enormous community, and by pushing the diagnosis to lower and lower ages, we are starting to develop interventions that can start very, very early as long as they're safe, right?

Jen Lyman:
Exactly. Yeah.

Dr. Nathalie Maitre:
Because this is someone's baby.

Jen Lyman:
Exactly. Exactly. Can you tell me what these super early interventions ... How do babies learn? Or maybe even go back further. How does cerebral palsy interrupt or disrupt the process of learning? And how does an intervention ... or some of the interventions that you designed perhaps ... how does that help fix that or change that?

Dr. Nathalie Maitre:
So change is a better word. I like the word change rather than the word fix. Fix assumes something is broken.

Jen Lyman:
Right, yes.

Dr. Nathalie Maitre:
And people are not broken.

Jen Lyman:
Are not broken. Correct.

Dr. Nathalie Maitre:
My dog jumps on the sofa and breaks a lamp.

Jen Lyman:
Yes.

Dr. Nathalie Maitre:
But people are not broken. So I think if you understand that cerebral palsy ... Some people use the word cerebral palsy spectrum even to describe this heterogeneous spectrum of disorders that originate from an insult that happened in the brain very early in life. And by very early, I can sometimes mean prenatally. It goes the whole spectrum of prenatal to birth to ... usually perinatal is only up to the first 28 days after birth. For preterm infants, that perinatal period can extend a little bit longer, right?

Jen Lyman:
Right.

Dr. Nathalie Maitre:
But these insults that happen in a developing brain, it caused two things. The first is what's called dismaturity. Anything that says "dis" simply means, in Greek, that it's not as it should be. So it means maturation in a way that's not what was planned. A lot of that can happen due to those insults, and the other thing that can happen is dysfunction. When the two happen together, as in the case of preterm infants, you've got this very complicated mix which, if you're compounding it sometimes with genetic factors, adds a whole different layer. And so these insults that happen, they change how a development is going to progress, and they also change how function is going to be established across different systems in the brain. Learning is really when a baby puts together different systems and makes associations between different parts of their brain, consolidates those connections, and then builds upon them through memory.
There was this fantastic TED Talk ... some people found it like profoundly offensive ... from Daniel Wolpert, and he basically says that the entire point of the brain is to move ... it was very funny ... and to reproduce because movement allows reproduction, therefore movement is essential. And when organisms don't move anymore, they don't need a brain. I'm totally simplifying it. But movement is absolutely essential to learning in the same way that the senses are. And in babies, if you think about it, the very youngest babies are actually sensory creatures, and this incredible, miraculous way that they have of taking one sense and another sense and making something that's just much bigger than the sum of its parts out of it.
And over time and through connection with other parts of the brain, but also with their loved ones ... and we'll talk a little bit about that ... and this is the work of Dr. Lickliter and some other giants in the field, Lewkowicz, incredible neuroscientists. What they've shown is that it's the salience of the information we get that gets refined over time and how babies learn. So what is salience? Salience is meaning. So we can listen to a voice, but if it's not our mother's voice, it's not as salient to us when we're a baby.

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
So what's what's extraordinary. Through salience, we narrow and focus our learning as babies. We get all this sensory input and we make something of it.

Jen Lyman:
With that. Yes.

Dr. Nathalie Maitre:
And then, it starts working with the motor system. So when we move at first, completely randomly, something happens. 'Oh, I just moved my hand and I started feeling something on my forehead." You can see how that is a tremendously important connection. It's, first of all, a connection between the somatosensory, the sense of touch. But also, proprioception where I am in space, and movement, how I move my arm and hand. The whole feedback loop is called a Bazin computer, where we learn from that. Our brains and bodies are constantly learning from that. And that's how babies are learning between their senses and movement.
And then what happens is this. "I touched something and I didn't feel it there. I just felt it on my hand. And my mom, I heard mom voice. That important voice." So connection starts to build, and touch is critical to that connection. And so the other thing is when you touch yourself, you're like, "Oh. Mom's not talking, but I feel it." So the emergence of the sense of self is also happening. It's absolutely extraordinary. So this loop between the sensory and motor systems helps us learn the world around us as babies and, more importantly, helps us make connections to the people who are going to be meaningful to us, and are going to add meaning to our entire lives.

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
Does that make sense?

Jen Lyman:
Absolutely. And it brings you back to the family and the essential of the family. It makes a ton of sense. It also brings me to my next question. I think you answered it for me, but I'd like you to elaborate. I was going to ask you ... The disruption to a developing brain that is cerebral palsy, how is this different to a stroke in an adult? And what I'm hearing from you, I'm thinking, "Okay, well as an adult, we already have a developed brain, and we already have these memories, and we already have these associations." And so to me, my understanding is that we're relearning something if we have a stroke. So interventions would be to help us relearn the movement versus an infant. We're helping them make those new associations through intervention versus stroke. So I'd love to hear an expert actually talk about it and not Jen interpreting.

Dr. Nathalie Maitre:
That was so good though. That was so good because it is a very profound difference. Cerebral palsy and stroke are absolutely not the same. You're right. The pathways have been wired in the brain and in the body when someone has a stroke at a point later in life. Now, if that stroke happens as a baby, or something else happens that disrupts the loops in the brain that connect to our motor and sensory systems, then we can't relearn. There is nothing to relearn. That's why it's not rehabilitation.

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
And some people think about it in a different way. Maybe it's a developmental intervention. It could be, perhaps, a restorative intervention or something like that. But what it is is actually a concept that was pioneered, I believe, by Dr. Aarts, it's A-A-R-T-S. And this group that they have pioneered the word "developmental disregard." It's this concept that if you don't know that something was supposed to be there, then how can you pay attention to it. If the wiring in your brain that connects the sensory and motor systems in your left arm was never fully connected to everything else. And if every gesture you make doesn't send the right signal, it sends signals full of noise to your brain, then how are you learning what your left arm and hand are doing?

Jen Lyman:
Fascinating.

Dr. Nathalie Maitre:
How are you learning what they're feeling? How are you learning about the responses that you get from others when you try to do things with it? And more importantly, in some babies, is it even there? If you've ever seen a baby who has a hemiplegia, and who hasn't been made aware of that extremity, they have a tendency to hold it not just in a flex position against themselves, but they don't use it.

Jen Lyman:
Right.

Dr. Nathalie Maitre:
And it's that lack of use early on in life that can drive, eventually, the pruning of the connections and the neurons in the brain that could potentially be used later on to form those connections. And that brings us back to early, right?

Jen Lyman:
Exactly. Yeah.

Dr. Nathalie Maitre:
Why early? Because early on, we still haven't pruned everything, and we're still generating new neurons at an incredible rate. There's this enormous potential to harness these developing neurons and these developing connections and associations between different systems and multisensory neurons, and motor, and neurons, but also "top down, bottom up" processes. The whole brain, really. And if we could just wire and take advantage of it when it is still developing, then the future down the line will look very different. And we know this, right? After six years now, we have been doing the Early Detection Initiative, and we've been researching early interventions in this initiative ... diagnosing earlier, starting earlier ... for now, almost, seven years. And these children, some physicians are having a hard time believing they have CP.

Jen Lyman:
Wow.

Dr. Nathalie Maitre:
And that's a whole nother problem for the parents because the parents are telling us, "This is unfair. I have worked so, so hard for my child to seem like he's a typically developing child, or for my child to be able to do everything a typically child developing child would do, and it's so much work. And it is so much work every day. And the doctor's won't believe me. I have to show them the MRI, I have to show them the previous diagnoses." But that's what we can get to. And so it is making a difference, so that's really cool.

Jen Lyman:
So what are some of the early interventions that are being used to improve hand and arm use with these very little bitties right now?

Dr. Nathalie Maitre:
So hand and arm use is a really interesting focal point because it's probably the one where we initially borrowed the most from the stroke world, actually. Except it's totally different because of what you mentioned. We're not relearning, we're learning. And really importantly, in tiny ones, what's called sensory affrents, the sensory neurons that go from our brain through our spine to our body ... and I'm simplifying it, I apologize to everyone ... but those sensory neurons, they're still developing. So if we deprive them of feeling during these critical periods of development in the brain and body, we actually can sort of prune things that we shouldn't be pruning.
There's been a lot of talk about what's called constraint or restraint therapy. There are different schools of thoughts on it. Mine ... and it is a personal opinion ... is as a physician, because I am a pediatrician first, is do no harm. So I have to be absolutely convinced that in a three-month-old, who's sensory system is still being built, when I do something, when I build pathways, I am not creating downstream harm.

Jen Lyman:
Right.

Dr. Nathalie Maitre:
So that means I don't ever want to fully deprive an extremity of sensory feedback, even if I'm trying to promote the use of the other one.

Jen Lyman:
Yes.

Dr. Nathalie Maitre:
And so that's one of the things. One of two interventions is constrain or restraint.

Jen Lyman:
Let's back up for a second.

Dr. Nathalie Maitre:
Oh, sorry.

Jen Lyman:
Yeah, I was going to say describe constraint there for a second.

Dr. Nathalie Maitre:
So constraint or restraint therapy involves forced use of a more affected extremity, whether that extremity is weak or tight, simply that it's less used, and shaping of the movement in functional ways to achieve two things. Which is, first of all, more frequent use, and secondly, more functional use. So gestures that are more efficient.

Jen Lyman:
So that's shaping of the movements in the more affected side.

Dr. Nathalie Maitre:
Shaping of the movement.

Jen Lyman:
So by constraining the less impacted side, you're practicing with the more impacted side, and giving the person the opportunity.

Dr. Nathalie Maitre:
But you can imagine that when we're talking about a three to six-month-old-

Jen Lyman:
They probably don't like that very much.

Dr. Nathalie Maitre:
Well, this is where parents come in, right? And this is where psychologists come in, and this is where baby learning comes in. We know that babies can't be forced to do something for extended periods of time. They're babies. Their attention span is maybe five minutes.

Jen Lyman:
Yeah. Yeah.

Dr. Nathalie Maitre:
All get out. The frontal lobe's developing still, right? And our attention, as adults, we barely have 20. But in a baby, it's hard. And working with them for much more than 20 minutes when they're three to six months old, it's really hard because we're reaching the limits of their endurance, their attention, all sorts of things. These interventions that we design, in addition to me being certain of very basic principles, they have to be goal-oriented, right? They have to have a goal. It can't just be movement for the sake of movement. They have to be active, meaning infant-initiated. The infant has to want to do the action. And then, it has to be repeated. It has to be intense. But at the same time, it must respect the family environment and those principles of infant learning, which is we have to think about all systems. We have to think about the family and connection as an essential part of learning. We learn through connection and connection to our families.
And so the initial forms of constraint that were developed for adults, and then for older children had to be re-imagined by giants, like Ann-Christin Eliasson, into more baby-friendly ways of doing things. And then, there's the work of Andy Gordon and Yannick Bleyenheuft, and HABIT in bimanual.

Jen Lyman:
Right.

Dr. Nathalie Maitre:
And [inaudible 00:47:58] also in Australia. These incredible researchers have shown us that it's really important to also consider bimanual function as we're working on a more affected extremity because we can't neglect what I told you at the beginning. We are more than the sum of our parts. We are not just one arm that tries to grab things. We are a whole organism trying to function, reach things, and really achieve something. So basically, by combining everything from positive parenting, psychology-based work in cerebral palsy that tells us, "How do we work with parents? How do we coach them and support them?" through different types of parenting styles and different tools, structure, attunements ... I referred you to Mary Lauren Neel.

Jen Lyman:
Yes.

Dr. Nathalie Maitre:
She's an incredible neonatologist who's done fabulous work on that. How do we work? How put that part together with the forced use and shaping of a more affected extremity with connecting both parts? Remember, I told you all these associations forming in the brain in the bimanual therapy. That's that combination of positive parenting, parenting support, soft restraints with forced use and shaping, repetitive practice that is goal-oriented-

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
And fun. It has to be.

Jen Lyman:
Yeah, and functional too.

Dr. Nathalie Maitre:
Yeah, and functional. And then, bimanual therapy all put together. But you can see how many researchers it takes to put something like that together, right? And you know, because you've helped me with this, that this is the basis of apples. And when I told you I've never done anything on my own in life, even these NIH-funded interventions. 10 years of research funded by the NIH in this ... I owe everything to these giants in the field. And I think about Iona and Ros, who gave me such amazing advice when I was starting to design clinical trials. It's truly extraordinary.
And so the best part is not just doing the research, but then figuring out ways with parents on different delivery models for it, and who benefits most from what because it's not a "one size fits all." And then thinking, "How do we tie this to early detection?" These are just some of the interventions, but there are many more. I work in the NICU on interventions that leverage parents' voice, parents' smell, to actually help work on language where babies actively request their parents' voice. And we're working on language connections in babies who've had neural insults. There's so much. And I think about the work of Stacey Dusing, who is trying to work on NICU-to-home transition, where it feels like this cliff, as a parent, you just drop off of. And so many others.
I just feel so bad because I read constantly about other people's work, and it truly inspires me. I know I haven't mentioned half of the people I owe to, and so I hope. But most of all, I owe everything to parents, right? Because they're the ones who said, "Hey. I can't do this on top of everything else," or, "I can't do this if it's going to mean months and months of me taking away from work doing this," and, "No, please do not intrude in my home. I do not want a therapist in my home four hours a day. I don't.' And they're right, by the way.

Jen Lyman:
Right. Well, that's what I was going to ask you. Do you have insights into helping parents choose these treatments when you come home from the NICU? You've mentioned it just before this, but I think that's one of the things that parents really do struggle with. There's so much on the internet, and it's scary to see some of the things that are out there.

Dr. Nathalie Maitre:
Right, and we're so vulnerable on top of it.

Jen Lyman:
I know, right?

Dr. Nathalie Maitre:
This is totally unfair.

Jen Lyman:
Exactly. And you feel so guilty because you want to help your child.

Dr. Nathalie Maitre:
Yeah.

Jen Lyman:
But at the same time, you don't want a therapist in your house for four hours, and some of these recommendations are that. And you don't want that.

Dr. Nathalie Maitre:
Right.

Jen Lyman:
And you don't need that either. Your baby doesn't need that.

Dr. Nathalie Maitre:
So it comes at a price, is what I would say.

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
There are a few principles to remember. It's the basis for Three for the Under-Three, the work we do with UNICEF.

Jen Lyman:
Yeah. Exactly.

Dr. Nathalie Maitre:
But the first is that you are the center of your child's universe and, therefore, there are so many things that derive from that concept. If you are overwhelmed, if you're not taking care of yourself, if you're not taking care of your own health, mental health, balance in life, then you cannot be there for your child. And then, more is not always better. Especially early on, I told you that the most important thing for a baby is to connect with their parents.

Jen Lyman:
Yeah.

Dr. Nathalie Maitre:
We know that that's not just important for motor and sensory system. It's integral to the sense of confidence and autonomy a child develops later in life. That sense of, "I am me. I am me as an entire person," starts developing through that connection with the parents, and it is a privileged relationship. I often tell parents who ask me, "What should I do right after the NICU?" And I always tell them, "There will be time for therapy. We'll give you a few exercises. We'll hook you up with some great therapists. But you know what? The most important thing you can do is connect with your baby, and here's some of the things that are connection." And they're like, "But that's just being a mom," or "That's just being a dad," and I'm like, "Yes. Yes."

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
Ultimately, you working on being a parent in every way that you can is more important than you working on being a therapist, a doctor, a counselor. These are not your roles. Your role is to be that child's parent. My son will be embarrassed, but when I was in the NICU and I saw this bloom of hemorrhage on the head ultrasound. I was all alone with that ultrasound tech watching at three days of life, and I could tell what that was. It was a Grade 4 IVH. It was Grade 3 and Grade 4, and I knew what it was.
It was this terrible sense that I was going down this deep, dark well, that I was falling and I couldn't catch myself. And at that moment, I thought, "Please, please. If I fall down this well and I die, could you please make my baby be okay?" And it's this silly bargain that we make, right? It's this moment where you would do anything. You would have the Earth open up and swallow you just so everything is okay with your child. And then, when you claw back out of the well with, let's be honest, psychological and medical help for PTSD.

Jen Lyman:
Exactly. I was going to say.

Dr. Nathalie Maitre:
Yeah, let's be clear. I'm not going to hide that I had a lot of support climbing out of that well. You realize that you must stay out of the well. Because if you don't, you will not be able to scaffold your baby. And it doesn't mean that you will scour the Earth for every possible treatment out there. It's that you will take the time to read and think really carefully about what interventions are out there. And ask yourself some really basic questions, which is, number one: Has anyone looked if they're safe? Because I don't care if common sense tells you they're safe. There was nothing that says that physical or occupational therapy is safe, by the way.

Jen Lyman:
Wow. Yeah.

Dr. Nathalie Maitre:
You ever thought about that. Yeah. There's nothing. Unless people have studied it, which we actually bothered to do and showed when it is and when it's not. And plenty of therapists have done that. Jill Heathcock and Stacy Dusing, among others. They're very concerned with this. And is it safe? Has someone actually bothered to show that? What is the evidence? Not anecdotal, not what another parent is telling me worked for their child, but is there evidence? Can I find something? Even if it's the original article and go to the CPF and say, "I don't understand this article."

Jen Lyman:
Exactly.

Dr. Nathalie Maitre:
"Get me the experts to write it in English so I can understand." What is the evidence that supports it? And then, carefully weigh this. How does it fit in your entire life of you, as a family? Because if it means mortgaging your home and spending three weeks somewhere so your child can get intensive physical therapy, when there are probably some other ways you could do this, then pick a way that's right for your family that doesn't destroy your family in the hopes of helping your child. I just feel so passionately about that, if you can't tell.

Jen Lyman:
Not at all. Not at all.

Dr. Nathalie Maitre:
Because I felt vulnerable, and I know that I would've done anything, literally anything. And I think about my mom. I told you my son is best friends with my mom. She would've done everything too. She's like, "Do I need to take a second mortgage on my home? I can. I can." I'm like, "No, mom. No. No." But you know what? I was lucky enough to be a physician, be a researcher, and have some really great sounding boards-

Jen Lyman:
Yes.

Dr. Nathalie Maitre:
Who just made me rethink, "Wait. Take a breath before I go changing my entire family's life." And does this fit in the everyday? Because my child needs me to have a job, right?

Jen Lyman:
Exactly. Right.

Dr. Nathalie Maitre:
And my child needs me to get enough sleep at night so that I have enough patience to deal with both my children during the day. My youngest deserves to have a mother too. It's not just about Leo. It's about Lucas. They are the loves of my life. I think I told you at the beginning, they saved me. But they save me every day because every time I design a new intervention, or I test out new research, having them reminds me to talk to families and say, "Even if I made this happen, tell me, 'How would this apply to you in real life? What sacrifices would you have to make for this to work?'"
And if these are too great, or if it appears that it would only benefit the 1%, then I need to rethink that. It doesn't mean that all that amazing work that's done with high technology isn't worth it. It just means that someone is going to have to be there to think about how that technology can get in the hands of everyone, even if they don't have electricity, and even if they don't have other things. So that's why implementation science is so important on your girl.

Jen Lyman:
I love it. I love it. I think that's incredible advice for families. I'm going to remind everybody listening that on cpresource.org, we do have phenomenal resources that can help you make decisions. Lots of these resources do come from Nathalie, and I always talk about them on our social media stories and all of that kind of good stuff as well. I think it's a great way to find some of the great work that she's done.

Dr. Nathalie Maitre:
And to ask for more, right?

Jen Lyman:
Yes. Yeah.

Dr. Nathalie Maitre:
And if there's ideas, this is what's great about the CPF. When I go to them and I say, "My patients are missing this resource," then the answer is never, "Oh, we can't do it." It's, "Let's see what we do have, what we could improve, and do we need to develop more? And oh, by the way, Nathalie, you're going to have to help us."

Jen Lyman:
As you mentioned earlier, Rachel's a big thinker, and she knows how to scale it too. And she's got a team that absolutely adores her and loves working for-

Dr. Nathalie Maitre:
Oh my God, they're amazing.

Jen Lyman:
We all enjoy working with each other and working with all of you. It's truly an honor and a privilege getting to know you through all of this, and getting to be part of the conference.

Dr. Nathalie Maitre:
Speaking of which, can I just do one more plug? The Georgia Alliance for CP you mentioned it at the beginning?

Jen Lyman:
Oh, yes! This is so exciting. I know. This is very exciting, and of course you can. Yes. This is brand new. It's so exciting.

Dr. Nathalie Maitre:
It is. It is. We started it this year. It's really a collaborative of researchers, but also community advocates, community organization, educational organizations, all throughout Georgia. We're all working together to basically, first, connect each other, and then to figure out ways in which parents can be more involved in the community ... the community involving research, parents and research, research in the community, and so on. So it's this enormous connection platform that we're building with the help, not only of these people, but we've made inroads with the state of Georgia, the Department of Health, the Department of Behavioral Health and Developmental Disabilities. It's incredible to me because this state, everyone is so collaborative. I haven't had a single person be like, "Oh, well this is my turf, not yours." And so if you're from Georgia, check us out.

Jen Lyman:
Absolutely. Absolutely. Well, Nathalie, I am so grateful. This was incredible. I have loved this interview and I can't wait to have it up. This is Cerebral Palsy Awareness Month. No better month to get this up there. So thank you, thank you, thank you for your time for this. Happy CP Awareness Month!

Dr. Nathalie Maitre:
Happy CP Awareness Month to you too.

Jen Lyman:
Thank you.

Thanks for listening to the Cerebral Palsy Health Podcast with me, Jen Lyman. If you enjoyed the show, please subscribe wherever you listen to your podcast, and follow me on Twitter and Instagram. You'll find the links in the show's description. Please feel free to email me with comments, questions, and topics you'd like to learn more about at jblyman@mac ... that's M-A-C ... dot com. This podcast is for educational purposes only. This podcast is not a substitute for a medical doctor or any other medical provider. This podcast is provided on the understanding that it does not constitute medical advice or services. We encourage all of our listeners to have an open, honest discussion about the topics presented on this podcast and/or any other medical concerns with their personal medical team.