Ep 158: How to treat and care for cleft lip and/or palate! With Dr Victor Chien, pediatric craniofacial surgeon

In this conversation, Dr. Victor Chien, a pediatric craniofacial surgeon, discusses his role in treating children with cleft lip and palate. He emphasizes the importance of multidisciplinary care and the long-term relationships built with patients and their families. Dr. Chien also shares insights into the surgical process, the timing of interventions, all the while reinforcing the message of hope and support for families facing these diagnoses. The advancements in cleft surgery have significantly improved outcomes and quality of life.

Dr. Victor Chien, MD is a plastic surgeon and the director of cleft and craniofacial surgery at Cedars-Sinai Medical Center.  To schedule an appointment call (310) 423-PEDS (7337).

Dr Jessica Hochman is a board certified pediatrician, mom to three children, and she is very passionate about the health and well being of children. Most of her educational videos are targeted towards general pediatric topics and presented in an easy to understand manner.

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Website: www.askdrjessicamd.com

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Transcript

Unknown: 0:00

Hi everybody. I'm Dr Jessica Hochman, pediatrician and mom of three. On this podcast, I like to talk about various pediatric health topics, sharing my knowledge, not only as a doctor, but also as a parent. Ultimately, my hope is that when it comes to your children's health, you feel more confident, worry less and enjoy your parenting experience as much as possible. Today, I'm thrilled to be joined by Dr Victor Chen, a renowned pediatric craniofacial surgeon and the director of cleft and craniofacial surgery at Cedars Sinai Medical Center. In this episode, Dr Chen will talk about his role in caring for children with cleft lip and palate, and we'll dive into the remarkable advancements in surgery that have transformed outcomes and improved the quality of life for these patients. A big thank you to Dr Chen for joining us today. It was truly a pleasure to speak with a doctor so passionate about the work that he does, and to learn about the special role he and his team play in the lives of their patients. And a thank you as always, to all of my listeners. I really appreciate your support. If you know anyone who might benefit from hearing this conversation with Dr Chen, please share it, and if you can take a moment to leave a five star review, wherever it is you listen to podcasts, it would truly make my day. Now, on to the podcast. So Dr Chen, I'm so happy to talk to you. I think that the work you do is incredibly interesting. I'm so proud of you, so proud to know you, and I'm excited to get more into this absolutely Well, Jessica, thank you so much for your time. It's a real privilege to be able to share something that's been a passion of mine for some time now. And just as a note to the listeners, Dr Hochman and I are fellow alums from the great Boston University School of Medicine, so we share a rigorous background in clinical training and clinical medicine, and it's just a real privilege to spend the time with you today. Thank you so much. I really appreciate that. Yes, that was a really fun thing to bond over when we first met, that we both went to the same medical school. So go BU, go terriers, yeah. So okay, tell everybody what you do for work. Sure. So I am the director of cleft and craniofacial surgery at Cedar Sinai Medical Center, and we are part and parcel of the new gear and children's healthcare initiative, which is essentially a pediatric or a children's hospital initiative within a hospital. It's been a long time coming. Very excited about the work that we're all doing together to build this amazing destination pediatric sub specialty location on the west side here of LA. Just brilliant partners, brilliant practitioners. Ultimately, it's really about finding the right people in the right place at the right time and gear and children's and Cedar Sinai hits all of those marks. It's amazing. And I'm just so curious, because obviously, the work that you do is incredibly impactful. But what drew you specifically to specialize in pediatric facial plastics and cleft lip and palate repair? Yeah, that's a great question. I know, honestly, there's something just so pivotal and fundamental about human connection. You know, social relationships, and especially in the setting of the pediatric population, you know, a child's smile and how they engage with the world is just such a big part of the human experience. And you know, kids that are born with craniofacial differences, specifically cleft lip and or palate, you know, they have roadblocks that are sort of put in their way. And one of the things, one of the great privileges of being a pediatric craniofacial and cleft surgeon is to be able to remove some of those roadblocks, and really, you know, get these kids back on track and get them, you know, in a situation where those roadblocks are less of an issue than they otherwise would be, it's amazing. And I'm just curious, when you do the surgery, can you paint a picture for my audience, what that looks like? I know there's a lot involved, but in a general picture, sense, how often does a child require surgery? Typically? How old would they be? What's your team look like? Yeah, 100% so I'll first start with the team, because I think that's the most important aspect of this care. You know, at gear and children's, the clef and Craniofacial Center is a California Children's Services Specialty Care Center designation. We also meet all the criteria that the the American cleft palate and Craniofacial Association dictate. So in terms of the care, we have a multidisciplinary approach, including, you know, obviously the cleft surgeons, there are two of us, as well as speech language pathologists, as well as orthodontists, dedicated care coordinator for these patients, and then a plethora of sub specialty experts, including medical geneticists, psychologists, social workers. Etc. And all of this is really, you know, it hearkens back to that the the phrase of, you know, takes a village. And so in that, in that aspect of cleft and Craniofacial care, a lot of this is longitudinal care that honestly starts even before the time of birth. And we follow these kids and families along from, you know, that prenatal diagnosis, usually all the way up until the times they're graduating from high school, and actually even beyond that. So you know, one of the things that I like to sort of highlight is that, and one of the reasons I got into this field of work is because the relationships that we build with these patients and their families is just unrivaled. There's nothing else like it in medicine. You know, the the the going joke is basically that in a cleft surgeon's office, you'll often see, you know, series of pictures of the surgeon with, you know, probably the mom in the second or third trimester, followed by, you know, the the surgeon holding a three month old, and then a one year old and then a toddler, all the way up until high school graduation. Really, the only thing that's changing is that the child is going through this amazing transformation, and the surgeon is just getting grayer and and older. That's so beautiful to visualize. Because I'm thinking, for many surgeons, the work is really interesting, but they probably don't experience that longitudinal relationship that you're talking about. I'm thinking, Yeah, you know, someone gets their appendix out, for example, you see the surgeon for a nice visit. You're very grateful for the surgeon, but you don't have that long standing relationship. So how special, yeah, Jessica, I mean, absolutely right. I think, you know, I've always come to the field of surgery, you know, with a profound sense of humility. I mean, ultimately, you know, it doesn't matter how many years of training any of us have had, it doesn't matter how many papers we've published at the end of the day when we're meeting patients and their families, it's usually at a time of vulnerability, and for lack of a better description, we are a new entity to them. We're a new person in their lives. And they're, we're meeting them in a time of need. And you know, when they agree to, you know, to pursue care with us, we have a debt of of trust that we need to earn over that over the course of child's lifetime, really, and so, you know, those bonds are really, really special and really unique, and something essentially, I think, that draws everybody in this field to this specific place. So you said you followed families from the time that the baby is in utero, and this is true mostly for the diagnosis of CLEP cleft lip Correct. You don't always see the cleft palate in utero. That's right. So generally speaking, you know cleft lip and cleft palate, you know those, those differences can be picked up on fetal anatomy scan, generally at the 20 week mark, if it is a complete cleft lip and palate, meaning it involves the upper lip, the upper jaw bone, as well as the roof of the mouth. And generally speaking, we can certainly pick that up relatively readily with our excellent partners in maternal fetal medicine, in cases where it's an isolated cleft palate, meaning the lip and the jaw bone are not involved, and it's just the roof of the mouth that can be a little bit more difficult, little bit more challenging to pick up on the ultrasound. But you know, honestly, you know, our partners in maternal fetal medicine and the ultra ultrasound sonographers are so expert that it's actually becoming increasingly rare to pick up an incidental cleft palate at the time of birth. It's certainly still happens, but the vast majority of cases are picked up in the prenatal setting. And then in terms of how common it is. Do you have any idea how common the condition is in the United States, and does it differ from outside the United States? Yeah. So, you know, the United States is unique, because we're sort of a polyglot society coming from all over the world. But in general, you know, the latest data from the CDC quotes, an average of one in six to 700 live births will have either a cleft lip and or cleft palate. And so that number is actually much higher than I think most people realize. And there are actually quite a few folks in very public facing roles in our society that have overcome the challenges that come with cleft lip and cleft palate, difference from prominent sports figures to political figures to television anchors to singers, etc. So, you know, it's, it's one of these things that that is well recognized, but in terms of the incidents or how common it is, that's something that I think is a little bit less well appreciated in general. I mean, it's, to me, it's clear that the reason is that the surgical advancement in this field has come so far. It's hard to tell. I think a lot now when people have had cleft lip repairs and cleft palate repairs, absolutely right? Yeah, which is amazing. So. Had mentioned that as part of your team, there's geneticists involved. Can you describe if there's a genetic risk to being born with cleft lip andor palate? And also, I'm curious, is there anything that somebody can do to lessen their risk of their child having cleft lip andor palate? Sure. So, you know, the data are a little bit mixed. I think ultimately, if there was one take home message, it would be the importance emphasizing the importance of prenatal care. You know, there's certain there are some associations with, you know, with prenatal substance use, you know, nutritional deficits, etc. The vast majority of cleft lip and cleft palate difference are not genetically linked, meaning, you know, there aren't genetic syndromes. Certainly they exist, but the vast majority are isolated mutations. And you know that now that said, if a family does have a child with a cleft lip or a cleft palate in the family tree, then it does become more prevalent within that family. The incidence, or the chance of having a subsequent child in a subsequent generation, or subsequent generations does increase. But ultimately, you know, it's going back to the sort of the the foundational message, really, you know, in terms of taking care of oneself and trying to minimize the risk, really, the most powerful impact is in in establishing a very robust prenatal care Okay, so, so going back to the question about surgery timing, I know every kid is different depending on what part of the palate and lip is involved. But approximately when would parents expect to have their kid be operated on, and how many surgeries are typically done with children that have cleft lip and or palate? Yeah, absolutely. So the first thing I'll say is that regardless of the number of surgeries that need to be done to get a kid back on track. We follow these kids throughout adolescence into adulthood. Now that said, you know, the standard of care for cleft lip repair is generally around three months of age if the cleft palate is involved, or rather, if the palate is involved, that is typically done between nine and 14 months of age. If the child has a complete cleft of the lip and palate, including the upper jaw bone or the the the maxilla, you know that bony gap needs to ultimately be repaired, generally around six to eight years of age, and that's to allow for the adult teeth to come in appropriately, and those are sort of the, you know, for the complete unilateral or bilateral soft lip and palate. Those three surgeries are standard some kids specifically that require cleft palate repair, you know, will potentially develop speech patterns as they age, because obviously these surgeries are done, you know, in the first year of life, and there's a lot of growing that happens after that. So even if the repair is perfect at the time of surgery, as the child grows, sometimes the palate is unable to reach back and close off the nose from the mouth, and you can have some air escape when you're saying specific consonants, and that can lead to a very characteristic speech pattern, which unfortunately can be quite stigmatizing, especially as these kids between four and six years of age are starting to socialize, going to school, etc. And so sometimes a so called speech surgery is necessary in some of these kids. In addition to that, you know, as kids are reaching skeletal maturity and as their craniofacial skeleton continues to grow in some of these kids, you can see essentially what's sort of colloquially called an under button. And what that is is basically a restriction in the growth of the upper jaw bone relative to the rest of the craniofacial skeleton, or the skull. I mean, some of those kids you know, in their teenage years require orthogonalthic surgery, which is jaw surgery. And essentially what that is, is sort of rebalancing those Facial Esthetics, again, with the goal of reducing sort of the stigmatizing signs of surgical intervention or prior craniofacial difference, etc. So all of these techniques are employed in the service of, number one, addressing any functional issues with feeding, breathing, speech, but then also, again, sort of honing back in on that importance of the human experience and socialization, you know, trying to take those differences off the table, you know, and allowing these, these kids, to get back on track to normal lives. It's so interesting what you're describing. Because I think for most people listening, when you see somebody with a cleft lip, you notice the. Esthetics. You notice the appearance of the face, and that draws your attention. But I think what's so interesting is how much more there is to the story. You have to think about speech and the jaw and breathing and feeding. There's so much involved, you know. So I really appreciate you explaining that, because there really is more than meets the eye. I mean, if you'll, if you'll allow me to sort of nerd out a little bit, here, go for it. It's, it's really fascinating. I mean, you know, so modern cleft surgery sort of surprising to a lot of people, really, you know, sort of came to the fore in the mid 90s. You know, the first description in the literature, scientific literature, regarding cleft lip repair was in the 1950s and with the advent of general anesthesia techniques to repair, these differences, sort of exploded on the scene. Now that said, you know, most of these techniques were, were not anatomically or functionally based. There was just sort of a, you know, we see a split in the tissue, and our goal is to remove that split. So you know, if you think about it from a functional standpoint, I mean, if we're just talking about the cleft lip, there are nine muscles of facial expression, most of which are paired. They're five cartilaginous structures. There are three bones. You have to think about the teeth and the transition from baby teeth to adult teeth, there's intricate sensory and motor innervation, three types of mucosa, and that's just with the cleft lip. And so, you know, in the mid 90s, Dr Sam Nordoff, you know, essentially heralded in, you know, the era of modern cleft surgery, which was really focusing on the functional aspects of all of these anatomic structures, and sort of restoring the appropriate relation between some of these structures. And so actually, you know, Dr Nordoff, you know, actually established the hospital at which I trained. You know, he's, he's now one of the points that he's well known for is now called the Nordoff point, which is the point on the cleft lip where the anatomy transitions from normal to attenuated. And that's sort of the fulcrum around which modern cleft surgery is based. You know, another predecessor of mine in my training is Dr David Fisher, who also trained where I did, and he's now the head of the clef program at Sick Kids in Toronto. And, you know, he heralded in the anatomic subunit repair, which is now considered the global standard. And so it's really interesting, because, you know, the evolution of of cleft surgery really has come through fits and starts, and it really wasn't until the mid 90s that we really saw this renewed focus on the underlying anatomy and the functional aspects of that appropriate anatomic relation as it pertains To lactation to speech, to facial animation and breathing. So it's really been pretty, pretty wild ride, when it comes down to it amazing. I remember, early on, as a pediatrician, I had my first cleft palate patient, and what was so tricky was it wasn't diagnosed in utero, and it was found because, you know, obviously there was a there was a hole in the roof of the mouth, but what first happened was they put the baby onto the breast after delivery, and the baby couldn't sustain a suck, and then they tried to give the baby a bottle, and the baby would take the bottle, and they found out there was a there was the cleft palate. What I found interesting was the hospital wasn't prepared for this, and there wasn't enough, they needed to order a special bottle to have an appropriate suction so that the baby could take milk. So there were a few hours in there where we didn't have a way to feed the baby with a bottle. And quite frankly, it also made me think about how amazing it is. The body gets it right so much of the time, because it is so complicated. There is so there are so many structures involved to get the face to work just right, absolutely right. Yeah. And what is, wait, what's the name of the special bottle? It looked really big and fat. The the Haberman, yeah? The Haberman, yes. I remember they brought the Haberman bottle in and it was a large size, just to make sure it made a suction on the roof of the mouth. Yeah, absolutely right, actually, just to get to that point, I mean, you know, one of the things about this that's so special about this field is, is that, I mean, yes, it's true. You know, I'm the director of cleft and craniofacial surgery, I'm a surgeon, etcetera, but really, this is a full court press. I mean, this is not, you know, sort of the typical interface with with a surgical sub specialty. I mean, we are, you know, we care for our kids and our families, as I mentioned, actually, even before birth, all the way through adolescence and adulthood. And the reason, and it's not just surgical things, right? So it's not just you're going to, you know, you're going to have your first surgery at three months of age. You know, come see us. Then. We're engaging with these families and these kids on a on a very regular, near monthly basis, in preparation for a lot of the the surgical, you know, interventions that are going to be necessary. But ultimately, you know, it's, it's the full team approach and the support of the families that really gets through in terms of the specialness and the uniqueness of this type of care, it's amazing. I'm thinking how wonderful for families to know about you, because I imagine you know at the time when the family discovers that their child is going to have a cleft lip andor palate, it must be so stressful, but then ultimately, so reassuring to know that your team is out there. Yeah, you know, I mean, I like to say that, you know, my job and my team's job is really to do as much of the worrying for our young parents as as we can do, right? You know, I think when you and I first met, I even mentioned, you know, we consider ourselves essentially the pediatrician for this craniofacial or cleft difference, and so we take care of all aspects of the care, up to and including, you know, if the school needs a note, you know, we'll take care of that. If you know, the pediatric dentist has a question, or the orthodontist has a question, we will take care of that as well. You know, I have a standing offer for all of my families that even you know at the time of diagnosis, you know, this can be relatively surprising. It can be scary, obviously. And you know, I have a standing offer to all of my families, you know, to set up, you know, telehealth conferences and in person consultations with extended family. And you know, if, if grandma or grandpa or or you know, older brother or older uncle has a question, I certainly, you know, want to be as supportive as possible to my patients and their families, and so I put myself on the front line in terms of answering some of those questions. Because ultimately, any extended family, any you know, you know loving environment, extended family and friends will have a lot of questions, and so the care that we provide is goes well beyond the examination room or the or the operating room. Now I want to ask you about your mission work that you do. When I was in residency, I met an anesthesiologist who told me that her favorite career moments where, when she participated in a group called Operation Smile, she would go abroad for a couple of weeks, she would be the anesthesiologist so that the surgeon could do the cleft lip and palate repair. You know, I just it really stuck with me that her most meaningful time as an anesthesiologist was doing this work, was helping with cleft lip and palate repairs, and she said she echoed your sentiments that to fix a child's smile and to give them that confidence that wasn't there before, and to visibly see an improvement in their self esteem, you know, with one surgery, she said it was so many such profound, meaningful work. And so I just wanted to ask you about your work, and I'm curious if you've had a similar experience, no, 100% I mean, you know, Jessica, it's, I think we're, we're very fortunate, you know, to be in in an environment, a healthcare environment, that is generally not lacking in terms of resource and You know, certainly the needs of any of these patients you know, either in a resource rich environment or a resource scarce environment or austere environment, are the same. And so you know, one of the one of the real blessings, I think, of of the mission medical mission work is the ability to bring this level of care to folks that otherwise would not have access to it. And you know, it's I run, I help run two missions and go every year, one in Nepal and one in the Philippines. Both missions are essentially led by local partners and the needs that they define in terms of what they want to see, in terms of building out their multidisciplinary approach and their ability to support their local communities. And so, you know, rather than going to a location with a full team only being there for a week and then not having any follow up, you know, the missions that I'm a part of are more longitudinally based, you know, specifically in the Philippines, we were working with local organization that is, that the longest standing organization in the Philippines, specifically dedicated to cleft lip and palate repair. And so part of the part of our mission there is really just to support the local healthcare system, the local surgeons and the local providers to to provide the same level of care that our kids here in in Southern California get in Nepal, the system that we work with in Nepal is the entire country. The. They have six, actually now seven satellite clinics out in the Himalayan foothills and across the country. The main hospital that we work with is in Kathmandu, and it has its own residency, its own fellowship, standing faculty, etc. I'm very excited about this particular project, because it has the potential to be the first standing mission in the world that can provide comprehensive cleft and Craniofacial care. And the reason that that, that is, you know, such a point of pride for us is because, you know, it's not us sort of swooping in and saying, This is what we're going to do, you know, and prescribe sort of the program going forward. This is 100% driven by our local partners on the ground that are identifying the needs in their own communities, and we're rising up to the challenge of meeting those needs. Really incredible. I feel like I'm talking to a hero. Certainly not. It has nothing to do with me. I'm I'm just a small part, a small cog in the machine. I'm also thinking, if you ever need a pediatrician to help you on these missions, please reach out. It sounds so rewarding. Absolutely. No, no. 100% I mean, one of the things that I'm really looking forward to as my kids are getting a little bit older, is bringing them on these missions as well, because there's so much just about, you know, taking ourselves outside of, you know, the the comfort zone, cocoon that we live in, and seeing, you know, the world with fresh eyes. It really sort of adds to just the human experience and expands horizons in ways that that I think you know, are hard to identify. It's I've just seen I've been so blessed to be able to provide this level of care, and it's such a humbling experience, and I grow so much as a person every time. It's really amazing. I'm so proud of the work that you do. I thank you so much for the work that you do and for explaining all of these interesting aspects of cleft lip and cleft palate and Craniofacial repair, and I think it's clear from hearing you talk that you really are humble, and I can tell that you're very passionate about what you do. And again, I'm so lucky to know you, and I'm so glad that you are here in Los Angeles. You know, Jessica was just such a privilege to spend today with you. And if there's anything that I can do anything that me or my team can do for you or your listeners. We always stand ready to be of service. Thank you so much. I will definitely put your information in the show notes, and I'm so appreciative that you're here. And I'm just last question you had mentioned that there are some well known people that have had clef lip and clef palettes. Are there any names that you can share with the audience, just so that they can be impressed by the work that your that people like you and your team can do, sir, well, you know, it's interesting one, one of the most prominent people that I think everybody knows of is Joaquin Phoenix. He's not shy about, you know, his his his challenges and overcoming his journey with cleft lip. But you know, there are, you know, there are sports figures, TV anchor, including Tom Brokaw, politicians such as Mayor Ed Cox from New York, Jesse Jackson Jr, you know, big Poppy from Boston. You know, Boston Red Sox. Big Poppy. My husband's a Red Sox fan. I appreciate that. Yeah, absolutely. You know, Cheech Marin from Cheech and Chong, there's, there are a lot out there. There are a lot out there. And so, you know, you know, to that point, you know, one of the things I think that I, and I tell this to all of my parents, you know, that I deal with and also with the kids as they age. You know, it can feel very lonely when you get a diagnosis like this, but, but you're not alone. We are here for you. We are here with you. Look at all of these amazing people that have gone on to accomplish amazing things, and those that brief list that I just mentioned are just the public facing ones that that are, that are vocal about what they've been through. There's, you know, one in 601 in six to 700 you know, if you sit in a high school gymnasium, you've got somebody in that crowd at the very least one or two. And so it's just reinforcing this idea that, you know, the universe might throw you a curveball every once in a while, but you've got people in your corner. You've got people in your corner, and we're here for you. Thank you so much. Thank you so much for all the work that you do, and I will definitely make note in the show notes of Cedar Sinai the gear and Children's Hospital and where they can reach you. Awesome. Thank you so much, Jessica, the real privilege. Thank you for listening, and I hope you enjoyed this week's episode of Ask Dr Jessica. Also, if you could take a moment and leave a five star review wherever it is you listen to podcasts, I would greatly appreciate it. It really makes a difference to help this podcast grow. You can also follow me on Instagram at ask Dr Jessica, see you next Monday. You.