Comprehensive Cleft Lip and Cleft Palate Care with Arun Gosain, MD

Transformative care through pediatric plastic and reconstructive surgery takes place every day at Lurie Children's Cleft Lip and Palate Repair Program. In this episode, Dr. Arun Gosain, Division Head of Plastic & Reconstructive Surgery at Lurie Children's, discusses the full spectrum of care the program offers to children with cleft lip and cleft palate, from birth through adulthood.

“Our goal here is, by the time the child goes to school, from sitting across the room, you should not be able to tell that they had a cleft lip or (the sound of ) cleft palate … from a distance across the room.”

Arun Gosain, MD
Division Head of Plastic & Reconstructive Surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago
Professor of Surgery, Pediatric Plastic and Reconstructive Surgery, Northwestern Feinberg School of Medicine 

 

Show Notes

• The prevalence of cleft lip and palate varies among populations. In Asian and South American countries, it can be as high as one in 500, and in Caucasians, one in 1000. In African American countries, prevalence is as low as one in 2000.
• Isolated cases are prevalent. Factors like smoking, diabetes and certain medications can increase the risk of clefting. There are some cases that indicate a genetic predisposition. If a family has one child with a cleft the risk for subsequent clefts rises with each subsequent birth.
• Lurie Children’s has a multidisciplinary team that includes, but is not limited to, plastic surgeons, otolaryngologists and orthodontists.
• The cleft team at Lurie Children’s starts treatment early on in the life of a child. Potentially these conditions can be detected via ultrasound before birth and care of the patient continues into adulthood.
• Cleft lip and cleft palate surgery is transformative, and when done in the first years of life, can avoid potential social isolation and low self-esteem.
• Several non-governmental organizations train local surgeons in high-need areas worldwide to treat cleft cases. Dr. Gosain collaborates and advocates for these by extending cleft care to underserved regions, where there exist over 2 million unrepaired cleft cases globally.
• Dr. Gosain participates in several research programs tracking patient outcomes and treatment to enhance global health strategies for cleft care.
• Families who need treatment should seek a multidisciplinary care approach from an ACPA-certified center like Lurie Children’s.

Transcript

[00:00:00] Erin Spain, MS: This is Precision, Perspectives on Children's Surgery from Ann & Robert H. Lurie Children's Hospital of Chicago. I'm your host, Erin Spain. On this podcast, we introduce you to surgeons at one of the country's most renowned children's hospitals to find out how they're transforming pediatric medicine. Today, we're exploring the transformative power of pediatric plastic and reconstructive surgery through Lurie Children's Cleft Lip and Palate Repair Program. This comprehensive program is led by Dr. Arun Gosain, Division Head of Plastic & Reconstructive Surgery at Lurie Children's. He joins me today to discuss the full spectrum of care the program offers to children with cleft lip and cleft palate from birth through adulthood. Welcome to the show.

[00:00:52] Arun Gosain, MD: Thank you.

[00:00:53] Erin Spain, MS: You are widely recognized for your expertise in craniofacial and vascular anomalies such as cleft lip and palate repair. What drew you into this specialty?

[00:01:03] Arun Gosain, MD: Well, I've been interested in pediatric healthcare and plastic surgery since I was finishing high school when I read about some of the landmark work that people at that time at New York University, we're doing in terms of craniofacial, surgery and helping children with the cleft and craniofacial anomalies. As I went down through my training and I started looking at different areas where I could specialize, I always had an interest in taking these skills to other countries and widening them to global health. And I thought that cleft care was very suitable to global health because it's a problem that's very common. And it's also a problem that we don't need to take a lot of technology for, we just need to take our skillset.

[00:01:40] Erin Spain, MS: How common is this problem, and how does it affect the children with cleft lip and palate? Tell me a little bit about the prevalence and what you see.

[00:01:50] Arun Gosain, MD: Yes cleft lip and palate is one set of disorders, and then cleft palate alone is another set of disorders, and they have a different incidence. Cleft lip and palate, varies with population, and the general rule of thumb is it's about one in a thousand in our caucasian population. It's higher in certain races, in Asian and some of the South American countries, it's as high as one to 500. And in the African countries it's as low as one in 2000. So somewhere between one in 500 and one in 2000. Cleft palate has a different inheritance and it's slightly less common at about one in 2000 or thereabouts, depending on the population. Just to highlight some of our research, we actually re-looked at those questions. And we looked at the registry of births over the last five to 10 years, and we found that in the United States, all those populations have a fairly equal incidence of cleft lip and palate with the exception of the American Indian population where it was higher.

[00:02:44] Erin Spain, MS: Oh, that's very interesting. What do we know about the causes? There could be a genetic component here. Can you explain to me some of the causes and what we know?

[00:02:52] Arun Gosain, MD: Yeah. So in most of the cases we see are what we call isolated. There's not a specific maternal cause, it's an isolated cause. And we feel that that does give you a greater genetic predisposition for subsequent children having clefts. So that's the most prevalent form of clefting. As soon as someone comes in, they say their first child has had a cleft. And what's the incidence of the next child having a cleft? It's somewhere between 2 and 4%. So it's gone from one in a thousand to about 1 in 50. Still a low incidence but if then they have another child with a cleft, that incidence jumps up to about 13%. And then with the third child up to 17%. That's why there is a genetic component and it's the probably the largest segment of what we see are isolated clefts and families want to know the incidences of subsequent clefts. We tell them that it's very low, but it's certainly higher than if they didn't have a child with a cleft. There are environmental factors, smoking, diabetes, and certain medications like anti-epileptic medications will increase the incidence of clefting as well.

[00:03:51] Erin Spain, MS: Can you describe some of the challenges that children face if they're not able to get treatment? What's it like for these children?

[00:03:58] Arun Gosain, MD: In the United States, just about all of the children we've seen have been able to get treatment and that's thanks to programs like Lurie Children's Hospital. When I go to other countries, I see children who have not had that luxury. Then I think that a lot of the things that we see advertised by groups like Operation Smile apply. Those children do have a lot of stigma in terms of their social outcomes, and also their career advancement is significantly limited. And as I mentioned, when I chose to go into this field, even at the end of high school, it was because of the fact that I felt that if we can make a difference that would be what I would like to focus on.

[00:04:30] Erin Spain, MS: So there's that outward appearance and how the world perceives them, but there are also challenges, feeding can be a challenge early on.

[00:04:37] Arun Gosain, MD: Yes, the feeding is more of a challenge if the palate is involved. So if it's cleft lip alone, certainly we counsel them on feeding. We've actually started an infant feeding clinic, so anyone who has a cleft lip, cleft palate or both are first seen or seen soon in their visits with us and our infant feeding team. Those families that don't need a lot of support which would usually be cleft lip alone, then need not continue to return to that team. But those families with cleft palates where feeding is more of a challenge because their ability to form suction and latch is much more compromised. They would continue with the infant feeding clinic until they're comfortable.

[00:05:12] Erin Spain, MS: The thing about clefts is that they can be seen early on ultrasounds in certain conditions, as early as the 13th week of pregnancy. Tell me about this early detection and why that's so important in getting treatment as soon as possible.

[00:05:25] Arun Gosain, MD: As I've been here for the last 12 years at Lurie Children's Hospital, the fetal health center has become more and more important in referral of cleft patients because so many of the children. are detected by prenatal ultrasound. They have a great program and I would recommend that anyone with a cleft or a prenatal ultrasound suggesting a cleft see our fetal health team because they can then review that ultrasound and be a little more precise. What we find is for cleft lip, the ultrasound is fairly accurate, but when we get deeper into the structures of the face, like the palate, it's usually not as accurate. So if you have an isolated cleft palate, it's usually missed on fetal ultrasound whereas we'll see a lot of children with cleft lip, and we can't really tell what's going on with the palate, and we tell them that we'll certainly pay attention. So it's very important because it gives the family the ability to start preparing well in advance. It's not a surprise. They're ready for all of the various feeding issues and also the psychological impact is much better absorbed if they know that this is what they're expecting. 

[00:06:20] Erin Spain, MS: Tell me about the approach that you take with your patients. Walk me through how you discuss this with families and get them prepared for the surgeries and what's about to take place.

[00:06:31] Arun Gosain, MD: Yes, ideally, we go through this entire process once we know what kind of a cleft that the child is presenting with, but before the child is born. We try to give them a slight overview of the cleft palate, but not overwhelm them. And when we see them after birth, and we know if there's a palate in its involvement, we can go into greater detail. For the lip, our timeline is we like to see them in the first three weeks after birth, once they're comfortable and stable at home. We then get them involved with infant feeding clinic, get them involved with the otolaryngology team because if they have a cleft palate, we would want them to see otolaryngology because the palate often doesn't drain the middle ear as well, and they're more prone to fluid in the middle ear. If they have a cleft lip alone, then we need not have that assessment. So that's why the postnatal visit is so important. Ideally, we'll educate them in the prenatal visit, but give them a clear understanding of their path in the postnatal visit because we can better examine the palate. We get them involved with ENT as needed, with our infant feeding clinic for all patients. And for those who have a cleft lip and there's a separation in the gum line, we will get them involved with our orthodontic team to start the nasoalveolar molding process. 

[00:07:35] Erin Spain, MS: This nasoalveolar molding process can be done on a cleft lip alone or a cleft lip and palate. If the cleft is widely separated. Tell me more about this process called NAM.

That's a form of molding where the orthodontist works with us and we take an impression of the gum line and we serially try to bring that gum line into a closer relationship to where it should be, as opposed to a widely separated cleft. As we progress in that process, we'll start bringing the nose forward and that's the nasal. So, alveolar is the gum line, nasal is the nose. And that nasal alveolar molding process will be what we recommend for any cleft that's widerSo those are all of the key things that are done before you even do surgery. Tell me a little bit more about the surgical timeline.

[00:08:19] Arun Gosain, MD: Our surgery for the lip is usually done between three and six months of age. If we're not waiting for a lot of nasoalveolar molding because it wasn't a wide cleft to begin with, then we'll do closer to three months of age. If they're in the NAM process, we will go closer to six months of age. That's the early part, and then there's a whole timeline after that. Just say that it's a child with a lip and palate, we'll have repaired the lip at three to six months of age. We'll then get them back to the feeding team because their feeding will have to be a little altered after the palate repair. And then we'll do the palate repair anywhere between 11 and 13 months, depending on how the family wants to celebrate the first birthday. So we take that into consideration. We don't like to wait much longer than 13 months because at about a year of age, our speech starts developing. we found from studies that if we do the palate repair before 18 months of age, there's no significant difference in the ability to speak, but if we wait longer than 18 months of age, those compromises that children have used in order to form sounds, we call them glottal stops, where they have to stop the air with mechanisms other than their palate. Those become refractory to teaching, and it's much harder to overcome that problem.

[00:09:24] Erin Spain, MS: This really is a comprehensive approach through this program. How does the team work together to provide this level of care?

[00:09:30] Arun Gosain, MD: it's called a multidisciplinary cleft team. I was the director for many years and I've now promoted my junior partner Noopur Gangopadhyay to be my co-director. So we have four plastic surgeons. The otolaryngology team is there at our team meeting. So just to backtrack after we've done the lip and palate repair, we will then see them in a team on a yearly basis after the age of two. And that team will consist of the multiple specialties that we've mentioned. Our team meets three to four times a month. Just to give you an idea of what we're looking for, when they come back to team say they had a cleft lip and palate, we're going to follow their speech every year to see if that's doing well, and if sometimes after the palate repair, we're still leaking too much air. We call it hypernasality. And we need to then either lengthen the palate, change the muscular arrangement or tighten the back of the palate area to correct that hypernasality. And that's something we try to do between ages four and six years of age before starting school. When the children then get into school, and if they had a cleft of the gum line, their teeth will not be able to erupt into that gum line properly. And we will then need to place bone graft in there, and we work with our orthodontic team, who they'll see annually in cleft care as well. And then the next thing we follow as they get into their teen years is facial growth. And if they've had a very severely affected lip and palate, it can impact facial growth. We'll start with orthodontics to try to encourage the upper jaw to grow in line with the lower jaw. We're doing that more and more with internal plates and bands called bollard plates. But if that's not successful , then we have to do jaw surgery. We tend to do that in the mid to late teen years, moving the upper jaw forward and sometimes having to move the lower jaw to give the ideal occlusive relationship. So it's a comprehensive process that goes from birth till about age 18 years, and that's why our team will actually follow them through that entire process on a yearly or every other year basis, depending on their needs.

[00:11:22] Erin Spain, MS: So as adults, do people still need care? What happens after those adolescent years when they're involved in a pediatric program like this? Will they transition to another care team?

[00:11:31] Arun Gosain, MD: We're hoping that we have taken care of the majority of their needs being the lip and nose form, getting it to as good as possible before they finish high school. I always say before they finish high school, we want to be all done. There's some children who will need care beyond that, and this has become a national issue that we've been trying to advocate for that oftentimes insurance companies will cut off at 18. And we are working with our national legislators and our organizations, the American Society of Plastic Surgeons, the American College of Surgeons. And there's a bill that we are trying to promote, and that's called ELSA or the Ensuring Lasting Smiles Act. And this would ask that all private insurers cover patients without an end age. Because we're hoping that we get perfection at the end of high school, but a lot of patients I see come from other centers where they may not have had such a methodical approach and those patients at any age will need revision. So the processes are the same. We want to get every child or every patient who's affected as perfect as possible. It may not have been done during the teen years, and we don't want to stop care on those people, which is why ELSA is so important, and we're continuing to advocate for it.

[00:12:34] Erin Spain, MS: This surgery really is transformative. Explain that to me. Explain the transformation that takes place socially and the way that these children and families feel and the way that the children look. Can you give me the whole picture? 

[00:12:49] Arun Kumar Gosain, MD: Fortunately in the United States, there are very few children who don't have their repair in the early years. And our goal here is soby the time the child goes to school, from sitting across the room, you should not be able to tell that they had a cleft lip or of course, the cleft palate would be the sound. But that's our goal is you shouldn't be able to see that from a distance across the room. Those children who don't have a good result or if those deformities are significant, it does cause them a sense of isolation and lowered self esteem. So that's why we're so aggressive. And my feeling is we shouldn't be operating too frequently because that causes scarring and too frequent operation also causes psychological stress. 

 So I think a well planned approach from birth till age 18 is what every team needs to adapt and that's what we've tried to do here at Lurie Children's Hospital.

[00:13:32] Erin Spain, MS: Something that we've talked about is that there are these comprehensive programs available to most children in the United States but not in other places around the world. And you are an advocate for bringing this surgery to children who are in need everywhere. You've spent some time in India performing cleft repair surgeries there. Tell me about the global health impact of this condition and how it can be addressed.

[00:13:54] Arun Gosain, MD: That's really where the major impact of our specialty is, is that we love to take care of the children in our neighborhood, and Lurie Children's Hospital is an excellent provider of care. But I think the great programs become even greater if they can take that care to centers that might not have the resources, and that's one of my goals with Lurie Children's is to continue to spread that view of the importance of global health. There are over 2 million children in the world who have unrepaired clefts and they will never have them repaired. So that's where global health becomes so important, I've worked with multiple what we call NGOs in global health during my career, starting with Smile Train, and I was on their Board of Advisors. Smile Train is the largest charitable organization in surgery in the world. We would go to the various countries you know, if they asked us to, and we would look at some of the hospitals and make sure they were performing up to par, so we're not the ones who are responsible for doing all the clefts, but we're responsible for making sure the cleft care is coming along as we feel would be meeting the standards of care. I then did a lot of work with Operation Smile. And with that group, we would go to a given center and we would do a hundred clefts in a week. We'd have five surgeons, and we did a hundred clefts in that week when we went to Paraguay. I think it's a great opportunity for those children, but the problem becomes the follow-up. They have local surgeons to follow the immediate repair, but that team approach for 18 years is not there. And so, I think the best thing is if each major institution like Lurie Children's can establish partnerships with a major hospital in another place, and thereby continue to educate the local surgeons, and to see that they develop programs beyond just the initial repairs. And that's been my most recent project in Global Health. We've started a memorandum of understanding between Northwestern University and the Kajabi Hospital in Kenya, and that applies not just to plastic surgery but all of the surgical specialties at Northwestern. I'd like to advocate that our institution support another institution would be a reciprocal relationship in teaching and service. I went last year and I'll be going again this year with my team. I'd like to expand the team and take an orthodontist with me as well this year and continue to help those programs develop their cleft program. And the other beauty of that is, when you go to a place like this and they come to know you, it's not just that hospital that will want to take advantage of what you do. It's all of the regional hospitals. So when I went to Kajabi last year, the University of Nairobi has 40 residents. So I spent one day with them and then there's a group called COSECSA, or the Sub Saharan African countries, which are 14, and they have their own training program in plastic surgery. So they were all brought to Nairobi, where I then spent the day talking to the COSECSA group about clefts. So you educate a lot more than you could do at one particular hospital. So our ability in global health is much broader than it is here where we're doing one patient at a time. We're doing the patient to show how it's done, but that's not our goal. Our goal is to show the local surgeons how we took care of that patient and to help build their teams and to continue to facilitate an interest amongst their trainees that cleft care should be part of what they do, even though it might not be the high paying part of their specialty like other parts of plastic surgery are.

[00:16:54] Erin Spain, MS: I can tell that you are passionate about this work and you've mentioned that you have even done research looking into the global health area. Research is an important part of this program. Tell me about the role that research plays in your career and in the work that you're doing now and detail some of the research that's taking place.

[00:17:11] Arun Gosain, MD: Yes, research is very important. I think all of us as pediatric plastic surgeons can contribute to our specialty. We can contribute to global health, but we also want to make our mark on what it is that we don't know that we can help to answer. When we look at cleft palate repairs, we don't know is what are the outcomes of one repair over another over time. A given surgeon will say, I do this repair, I do it well, and this is my results. But comparing it to centers throughout the country in the world is less, consistently done. So I started a registry through our plastic surgery foundation where we've asked anyone who does a cleft to enter their data, the same parameters into one registry so that that can help us to understand over time how those patients do. And we've asked surgeons to continue to do that as they follow the patients for their facial development, for possible breakdown or fistulas in their palate, and for their speech outcomes, as well as facial growth. So that would be in a registry format that we're trying to do. And there's another registry that's through the National Institutes of Health that we're a participant in that started that, and we're continuing to follow speech outcomes in cleft palate repairs. We've also looked at ways of improving speech outcomes after their four or five years of age and they don't have the function that we'd like them to have. And we've done a number of studies looking at how can we improve those outcomes without compromising the palate or the airway. Cause the tighter you make the palate, the more difficult you make breathing through the nasal airway. So it's a balance between too much nasal air escape, which is why they came to us for secondary management and making it so tight that they can't breathe through their nose. So that's always an area of investigation. For cleft lip, we have looked at some of the fetal questions that we've talked about and how families feel with fetal ultrasound. What is the accuracy of fetal ultrasound for cleft lip and palate? And we've then gone on to ask some of the questions about how can this best be distributed to the rest of the world? So part of what we did is we wrote the chapter in global healthcare on our techniques for lip repair so that it can be used as a reference for global health surgeons throughout the world. And then lastly, as we said, for global health, we have a number of projects looking at how can we improve the distribution of global health. We looked at where are all the Google searches going for cleft lip repair and where those are going because that's where they're looking for places to go. If they don't have the resources. We've suggested that many of the NGOs could then focus their efforts on those places because just because an NGO has a lot of hospitals in the Philippines doesn't mean that they're serving Nigeria properly, and that's something that we now have the technology to do based on searches like this. 

[00:19:35] Erin Spain, MS: For any families that are listening, maybe they have a recent diagnosis from an ultrasound, or they're going through this program right now with their child. What are some words or advice that you would like to share with them as they embark on this journey?

[00:19:48] Arun Gosain, MD: What I would say for families is if it's the prenatal period, certainly visit an ultrasonographer and make sure that they're reliable in cleft care, because not all ultrasonographers are that familiar with the cleft diagnoses. And if there's any thought, particularly families that have a slightly higher risk of cleft that those families might consider if they're in this area coming to our Fetal Health Center because they're so adept at looking at that type of thing. For families, whether they're in the Chicago area or not, I always recommend that families look for a team that's supported by the American Cleft Palate Association because it is a multidisciplinary approach to the problem. And without that, I don't really think people should be doing cleft care because just doing a cleft and saying I did the cleft is not going to take care of the patient. The other beauty of that is that if a patient of mine moves to another center, I'm only going to look for surgeons at an ACPA certified center to send them to, and other surgeons will do the same for me. So that gives a little bit of a partnership within the United States where you have a reliable source of care.

[00:20:45] Erin Spain, MS: Lurie Children's Hospital has a cleft coordinator. Our cleft coordinator right now is Melissa Reisman, and any family that has a question can call our central office, or KidsDoc will send them to our cleft coordinator and she will be able to help if she can't answer their immediate question, she'll be able to send them to the proper specialty in our cleft team who can address that question. So I think we have great lines of communication here at Lurie Children's Hospital. For families that are not in this area, my suggestion is to start with the American Cleft Palate Association and see how they can get connected to the best resource.

Thank you so much for coming on the show and sharing all this information and your expertise. Your passion for this program really shines through. So thank you for your time today.

Thank you. For more information, including how to make a referral or an appointment, visit LurieChildrens.org.

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