Specialty Spotlight With Siva:
Beyond the Smile: Advocating for Children with Facial Differences

Dr. Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, home to the Kid Experts, where the complex is our every day. Each episode, we bring you intriguing stories and relevant pediatric health care information as we partner with you in the care of your patients. Our guests, data, ideas and practical tips will surprise, challenge, and perhaps change, how you care for kids.

Welcome to Talking Pediatrics. I’m your host Dr. Kade Goepferd. Today’s segment is Specialty Spotlight with Siva, where we delve into the complexities of pediatric medical and surgical subspecialties with pediatric otolaryngologist and facial plastic surgeon Dr. Siva Chinnadurai.

Dr. Siva Chinnadurai: Welcome to Specialty Spotlight with Siva. Cleft lip and palate is one of the most common congenital conditions, but the journey that these patients face is complicated and it’s not always well understood. To help us with that, I’m excited to welcome Dr. Steven Goudy.

Dr. Goudy is a Professor of Otolaryngology and the vice chair of research in the Department of Otolaryngology at Emory University. He is also the president-elect to the American Cleft Palate and Craniofacial Association where he is a passionate advocate for patients and families navigating the challenges of cleft and craniofacial conditions.

In addition to his clinical and academic accomplishments, Dr. Goudy is an innovator, an entrepreneur, and a transformative mentor whose work has inspired countless colleagues and trainees. I’ve had the privilege of knowing him as a mentor, a colleague, and a friend.

Today we’ll explore his expertise, his insights into cleft and craniofacial care, and his vision for advancing advocacy and improving outcomes for these patients. This conversation is especially relevant for our pediatric colleagues, who play a crucial role in supporting these children’s and families from before birth and throughout childhood.

Dr. Goudy, thanks so much for joining us.

Dr. Steven Goudy: I’m excited to be here and good to see you.

Dr. Siva Chinnadurai: You as well. Let’s dive in. Can you give our listeners a little bit of an overview of cleft lip, cleft palate? How common is this and what’s involved?

Dr. Steven Goudy: Like many answers, it depends. It depends on where you’re born, who is in your family, what area of the world you are in, and so on.

So in the United States it’s one in a thousand live births, you’re in Asia, it could be as frequent as one in six hundred, one in seven hundred live births. So it really depends on that geographic background, and certainly also related to your family history and so on.

What a lot of families don’t understand, as well as, potentially, medical providers, is that cleft lip and palate is very common and it is something that’s related to very early stages of embryogenesis. So when the baby is just being formed the sixth week, the seventh week up, through the 10th and 12th week, all of the face is developing, and so by the time that the family’s figured out they’re going to have a baby, the face is pretty much formed.

So, from a early-intervention standpoint, the only effective things that we’ve identified is folate and prenatal vitamin supplements, number one. And number two is counseling these families that it’s not their fault, not a responsibility that they have, this is more of a complex craniofacial difference. And we all actually start out with a cleft lip and palate. For whatever reason, our faces didn’t have a cleft, or a separation, and these families faces did. So I think normalizing facial differences and helping families not assume guilt is important.

Dr. Siva Chinnadurai: We’ve come a long way in terms of prenatal diagnosis. Can you talk to us a little bit about the advances in prenatal diagnosis and maybe how that looks for a family who receives that diagnosis on an ultrasound, how their pediatrician can be an advocate in that situation to connect them with care or counseling?

Dr. Steven Goudy: Technology continues to evolve. The screening ultrasound usually happens at 20 weeks. So again, at that time, the face has long since formed. And so again, reiterating to the families that this is not the Diet Coke, or Diet Pepsi, whatever you choose, or the pizza, or the tacos, or whatever they have. There should be, again, no maternal guilt. In some medicines, you can take a good history for these families so that you help them interpret the context of the finding.

So if we do on 3D, 4D ultrasound, you see these pictures of children that have these differences, it may or may not be related to anything in their environment, but helping them understand that there are people that their whole careers, like yours, and mine, and others that are focused on supporting and caring for these children and that our goal is for them to go, and do, and become whatever they want.

There’s several examples of nationally, internationally identified movie stars who do have cleft and cranial facial differences. So the community physicians, the pediatricians, I think there are teams of people, and again, I think a team care, patient-centered care is the most important thing that your child will need throughout their life. And identifying a team in your community that will bring to your child a focused, comprehensive approach to their care and a lot of that can happen prenatally.

We meet with patients all the time prenatally at 22 weeks or 23 weeks and say, “Hey, look, we’ve got you. Don’t go on Google and get… Not that you don’t want to educate yourself, but make sure you get the right resources.”

And as a pediatrician that you understand what are the right resources. And the American Cleft Palate Association is the standard-bearer, and has guidelines, has parameters of care, and that’s a great place to start.

Dr. Siva Chinnadurai: A point that you made that I want to drop back onto is the importance of multidisciplinary, coordinated team care.

And what do you think are some of the barriers that keep people from getting in front of a team like that in a timely fashion? What are the barriers for the families or for the providers referring or even for the teams to deliver that kind of care?

Dr. Steven Goudy: Again, it really depends on how you’re coming to this, right? So if your family has a history of cleft and palate then you already, hopefully, have that idea that team-based care… Because patients that have cleft and cranial facial differences will not just have “cosmetic differences.”

It is not just the surgery, it’s the dentistry, it’s the speech. It is potentially audiology. And from the get-go, it’s really speech therapy, and feeding therapy, and so on. And so I think we all recognize that if we need or understand the need for comprehensive approaches, then we need to go to the Super Walmart or I’m sorry, you’re in Minnesota, so it’s got to be a Super Target.

Dr. Siva Chinnadurai: That’s right.

Dr. Steven Goudy: Of things that you can go and get all of your needs met in a single visit. Because to talk to the barriers to care, one is knowledge. There’s been a democratization of knowledge. You get too much. So understanding, number one, there is an organization dedicated to the care of these patients and leveraging those resources.

And number two, is it distance? Is it access to healthcare? Is it social determinants of health? Is it literacy? Because, again, our goal as physicians is to take care of everybody equally well. Having said that, if you don’t have enough gas in your car, if you live in a very rural area, if English is not your first language, those are all real barriers.

But I’m hopeful that the families that hear this understand that we want them to be seeing us, and that we are going to do everything we can. We have social workers in our clinics whose sole job is to make sure that your baby gets the right care, at the right time, by the right people.

Dr. Siva Chinnadurai: What’s the ACPA position, or just your perspective, on how is that communication facilitated between the big teams and the primary care providers in their offices?

Dr. Steven Goudy: Number one, communication is key for the many community providers that may have one, or two, or three of these patients in their practice over their lifetime. It can be overwhelming, and certainly you may struggle to identify are the milestones going to be similar? Are they not similar? What should I expect? How should we advocate for people in our community?

I’m in Georgia and you’re in Minnesota. If you live three or four hours away from the big medical center, it’s impractical for you to get resources that are weekly in our center and more so working in the community. So from a community provider standpoint, understanding that there are parameters of care, meaning here are all the milestones, here’s where the kids, in general, are going to be and here’s where we think they should track. So having some true source of here’s where they should be, and then being able to interface. The parameters of care and the teams oftentimes have pediatricians or other community providers that understand both sides of that equation and can help do it. I would say teams in general are not all the same either, so understanding and getting to know the teams and what their strengths and opportunities are…

One team may not have dental care as robustly as another one, and also shepherd your patient through their care, finding them, local dentists, local orthodontists, all people in medical professions have been exposed to collecting craniofacial differences at some point, particularly in pediatrics, but you may have to lead them along and there can be conversations that are both ways to get the best outcome for the patient.

Dr. Siva Chinnadurai: Can you talk a little bit about the lessons you’ve learned from the folks that you’ve hosted, or that the organization has hosted, or just through your own experience about what are some of the struggles that kids talk about growing up?

Dr. Steven Goudy: Spending time to listen, to understand, to give agency to the families, to communicate their needs as well as their numerous providers of cleft care now that also have a cleft difference, allowing or empowering or advocating those folks to tell their story I think, number one, speaks to the patients in a way that I can’t, and number two, it allows or informs us as providers how we could be better at shared decision-making with the family as well as the patient when it becomes appropriate, and normalizing facial differences.

Because I think there is stigma about having differences of any kind. I was talking to somebody today and their child was in middle school. I’m like, “Man, middle school people are brutal.” And how do we go about making a society less focused on differences and more focused on the similarities that we all share? Whether it’s facial or not.

Building that community, identifying other people in your community, because if it’s a one in a thousand live births, there are other people living in your community with shared experience, with lived experience, both as parents as well as patients, and participating to the degree in which you feel comfortable, that you talk about how to manage those stigmas, because I haven’t lived it so I can’t tell you, but also how to navigate and advocate for yourself. There are some very powerful folks who are telling their stories in an authentic way and teaching me, teaching you, things that I should have, or wish I had known, at the beginning of my career.

Dr. Siva Chinnadurai: Can you talk about some of the trends in technology, telehealth or other digital tools that are shaping the future of cleft and craniofacial care and how those tools, or how action on behalf of the association, can help reach out into some traditionally underserved communities and start to bridge that gap in care there?

Dr. Steven Goudy: Obviously during the pandemic, a lot of us fell into digital health platforms, and I think obviously as an ENT doctor you… I can’t look in somebody’s ears very easily, remotely. However, I think it is a very useful tool to communicate with patients and do checkups and things in lower resources settings.

I think from a speech pathology standpoint, there’s a lot of telehealth that can deliver speech, and that’s something that’s actually done quite well here in Georgia, both for patients with cleft and craniofacial differences as well as hearing loss, because our state is so big and there is so much rural health. Unfortunately you can’t do surgery remotely, dental care remotely, and dental care is its own special layer of complexity because it’s not covered in the same way that the cleft may be. So that’s an asterisk and a special issue, but I don’t doubt that over time we’ll see the evolution of AI-based speech trainers for patients that have clefts.

There’s lots of things that we’re doing to push the envelope, but I think it will take time for those to become a reality. It is funny because Google, if you have a speech impediment, is going to interpret your speech differently, and patients that have cleft lip and palate their resonance or their articulation may be different. So I know that big companies are working towards a more just system for patients to access and use technology, so I hope that that will continue to evolve.

Dr. Siva Chinnadurai: Can you tell me a little bit more about what you guys are doing with speech and audiology in Georgia? How do you structure that program?

Dr. Steven Goudy: We actually have a partnership with a group here in town that does auditory verbal therapy, and it’s called the Auditory Verbal Center here in Atlanta.

And so they have audiologists that do remote auditory verbal therapy with patients that have hearing loss. And so we can certainly leverage that for hearing loss patients, which some patients that have cleft and craniofacial differences also have hearing loss. And then more indirectly, our speech pathologists develop treatment plans and communicate directly with the speech pathologists of our cleft craniofacial patients in their communities.

Also, it’s a mixed model, but being in a big urban center, you have to leverage all of the different resources around you, which is why, again, you want to go to a center that has acknowledged the standards and the parameters of care so that you can get plugged into all of the things that will help your child develop all the skills they need to go, and do, and become what they can and what they want.

Dr. Siva Chinnadurai: When you look forward during your term as president of the Cleft Palate and Craniofacial Association and beyond, what do you think are the key priorities moving forward in terms of the areas we’ve talked about, advocacy, education, research?

Dr. Steven Goudy: So the good news is I’m not president yet, I’m president-elect, so that means I just get to sit around and observe. But I’ve been involved in the organization for my whole career, and I think we’re evolving with the times. I’m very proud of the fact that the lived experience is continuing to take a more centered role.

One of the things that has been said as it relates to the lived experience is that “nothing about us, without us.” And so really just having doubling, tripling down on that involvement and the shared decision-making of care for patients that have cleft and craniofacial differences, not just with the families, not just with the patients, but also with the relevant disciplines in our field that are supported, that have providers that also have been patients, because I think that that’s very meaningful and impactful.

Because at the end of the day, we all want what’s best for our patients. And historically, right, wrong or indifferent, there’s the sense of or the trope of the surgeon. She or he walks into the room, tells the patient, “you’re having ABC done,” and then walks out of the room. And this is really changing the experience in a patient-centered way, in a lived-experience way, to design an outcome that reflects the patient journey of those that have cleft and craniofacial differences.

From an education standpoint, the way that we learn and the way that we absorb information is changing, and we as an organization, and this is Steve speaking for Steve, not Steve speaking for the ACPA, I think we have to change, and communicate, and teach using a multimodal approach. Certainly there are people who like to sit down and read tomes of information.

Having said that, given a magic wand, I would create clips of information, digestible things that teach or hit the core points, with the availability to dig deeper in a way that’s leveraging the different platforms in which people access information.

And then from the research standpoint, research is typically supported by our government. Our government is pivoting and changing. The National Institute for Tensile and Craniofacial research may or may not exist going forward, so this is a call to action to those listening like, “Hey, advocate for children that have cleft and craniofacial differences.” And tell your senators that we do think it’s important to understand this, because I feel, and obviously I’m biased, that if we unlock some of the mysteries that are plaguing and hampering the recovery and wellness of our patients that have cleft and craniofacial differences, it will have an outsized impact on the outcomes and healing of patients that don’t.

This is a relatively small group of patients, comparatively, that have lots of needs, surgical and non-surgical, and if we can focus on evolving the ways in which we provide care for them, I think that that will help us unlock benefits for a much greater population.

Dr. Siva Chinnadurai: Well, Steve, we could talk all day. There’s such a rich topic to talk about, and I really thank you for your time joining us.

Today, Dr. Goudy shared with us some of the changing roles in technology from prenatal diagnosis, to telehealth outreach, and care speech and audiology care for patients, for primary care providers who are looking for more information about how to care for children with cleft lip and palates, or what their own patients can expect on their care journeys.

I pointed us to the parameters of care, which are available on the American Cleft Palate and Craniofacial website, and really shared the importance of bilateral communication between the primary office and the specialty team, and that the keys to success in taking care of these patients lie on the medical side, in coordinated multidisciplinary care, but really the heart of it is giving patients space to share their authentic selves, to express that lived experience, and so we can partner with them in helping them chart the courses for their own life.

And then working together with patients, and families, and strong advocates to advocate for resources so that we can help children with cleft and craniofacial differences chart the future for themselves.

Thank you so much for joining us today, Steve. I really appreciated your time as always.

Dr. Steven Goudy: Thank you. It has been great. The only regret I have is I’m not there with you in the same room, that would’ve been better, but I applaud what you’re doing, because communicating the needs for these patients, as well as really empowering the community physicians to help us, they’re the bastions, the protectors of these patients, and we really value what they do. So they need to know that we care and that we can’t do our job if you don’t keep the kids healthy and that’ll help us.

Dr. Kade Goepferd: Thank you for listening to Talking Pediatrics. Come back next time for a new episode with our caregivers and experts in pediatric health. Our showrunner is Cora Nelson. Episodes are produced, engineered and edited by Jake Beaver and Patrick Bixler. Our marketing representatives are Amie Juba and Krithika Devanathan. For information and additional episodes, check us out on your favorite podcast platform or go to childrensmn.org/talkingpediatrics.