Bill Klaproth: This is OMS Voices, an AAOMS podcast. I’m Bill Klaproth. And with me is Dr. Rania Habib, who is here to discuss: A parent’s guide to navigating cleft lip and/or cleft palate. Dr. Habib, thank you so much for being here.  

Dr. Rania Habib: I am delighted to be here. This is one of my favorite topics to talk about. 

Bill Klaproth: Well, then you are at the right place. Absolutely. So thank you again. We appreciate it. So, how is a child first diagnosed with cleft lip or cleft palate? And how does a parent navigate this process? 

Dr. Rania Habib: First of all, I always like to reassure patients because it’s a very startling diagnosis. So we will often see a cleft lip or cleft palate discovered during the prenatal ultrasound. It’s interesting to note that the cleft lip is often more easy to diagnose than the cleft palate, just because of the location. So obviously the lip is right in front. The palate can be obscured depending on how the child is actually situated within the womb. If an anomaly is identified, the OB-GYN will then typically refer that parent to an oral and maxillofacial surgeon (OMS) who’s specifically trained in cleft and craniofacial procedures. I also like to reassure patients that, when you get this diagnosis, we have to understand that 70 percent of those kids are non-syndromic. So that means that the majority of these kids are healthy, and they will likely not have additional health problems that are going to complicate their life. 

Bill Klaproth: So, Dr. Habib, as you said, this is usually discovered through an ultrasound. So then the parents are referred to you. Can you give us more details about what to expect at the initial appointment with the OMS? 

Dr. Rania Habib: So we call that appointment the prenatal visit. And the surgeon’s primary goal during that visit is to provide the parents with extensive information about cleft lip and cleft palate. We aim to ensure that they understand the potential surgical path that their child may undergo. This typically involves explaining the number of surgeries, the recovery process after those surgeries, potential complications and any other details that are related to the surgical correction of cleft lip or palate. 

Bill Klaproth: So then at this prenatal visit that you just mentioned, can you give us more details about what is discussed and what a parent can expect? 

Dr. Rania Habib: Absolutely. We like to show parents models. This will show them what a cleft lip or palate may look like and the expected results postsurgery. We also like to give them an outline of the expected surgical timeline that they will be provided so they can visually see those different time points. We also may introduce the parents at that time to the cleft and craniofacial team, and other teams may wait until the baby is born to bring them into the cleft and craniofacial team. And that team is comprised of cleft and craniofacial surgeons, speech therapists, orthodontists, audiologists and other relevant professionals that will aim to provide a comprehensive, multidisciplinary plan of care for the child and for the parent as well. 

Bill Klaproth: So you just mentioned surgical timelines are discussed. What are the general surgical timelines a parent can expect?

Dr. Rania Habib: So if the child is diagnosed with a cleft lip, we aim to do that surgery when they are typically somewhere between 3 to 6 months of age, and our goal during that time is to ensure that the baby can feed well. So we want to preserve the sphincter of the lip so now the baby can latch onto the bottle or the breast and get milk efficiently. And we wait for that timeframe because we need to make sure the baby is healthy enough to undergo anesthesia. If the child has a cleft palate, surgery is generally performed between 6 months of age to a year. And our goal during that surgery is to do it before the child is going to form speech so that they have a working palate so that speech is easier for them. If they have an alveolar cleft, which pertains to a cleft in the ridge of the mouth that holds the teeth – it’s typically in the upper jaw or the maxilla. Surgery for this is done when the child is between 5 to 7 years old, sometimes even as late as 6 to 8. (It) depends on the preference of the surgery center and factors as when the teeth are coming into the mouth. 

Bill Klaproth: So if it’s a palate, you wait longer to surgically repair it, is that correct? 

Dr. Rania Habib: Yes. One of the negative effects of closing the cleft palate is potentially restricting the growth of the upper jaw. And so research has shown that if we wait and delay that surgery until the child’s a little bit older, not only do they have more robust tissue for the actual surgical procedure to reorient it in the correct direction, they have more robust muscle to reform the muscular sling, but they also have less chance of that maxillary restriction. 

Bill Klaproth: To repair the lip ahead of time and then wait to repair the palate? So you can do the lip ahead of time? 

Dr. Rania Habib: Yes. So if a child has a cleft lip and palate, that’s part of that surgical timeframe that we’re telling them. They will require a separate procedure for the lip and a second surgery a few months later for the palate. 

Bill Klaproth: And then it’s also important for the lip to for feeding, right? If a woman is breastfeeding, so the child can latch on, you really have to correct that lip, I would think, sooner rather than later? 

Dr. Rania Habib: Yes. Since feeding is a big part of the baby gaining weight and having adequate nourishment for development, closing that lip and reconstructing the sphincter of the lip will help with both bottle feeding and breastfeeding. 

Bill Klaproth: I would imagine this is really apprehensive for a parent when they come to see you. I’m sure they’re like, “Oh my God, my child’s got a cleft lip and potentially a cleft palate.” I bet you that raises a lot of anxiety. How do you address apprehension a parent may feel about cleft lip and palate and about surgery, especially concerning pain management with a child that’s 6 months old? 

Dr. Rania Habib: It’s completely normal for the parent to feel apprehensive. We want to make sure that the parent understands that. Those feelings are normal, and we are there to help guide them throughout the procedure. Parents can take comfort that their infant’s pain management is a top priority and all the steps that we take to ensure their comfort and safety, both before, after and during the surgery. We generally employ a comprehensive approach to pain management to address pain from multiple angles. We ensure the infant experiences as little discomfort as possible, and we definitely check on that patient several times throughout the postoperative procedure. So the oral and maxillofacial surgeon, who’s a cleft and craniofacial-trained surgeon, most of the time will prescribe necessary medications that can include ibuprofen – so you’re thinking about a trade name could be Advil, something anti-inflammatory. We’ve shown that when we decrease inflammation, we’re decreasing pain. Acetaminophen, common name is Tylenol, again, an excellent pain control. It helps with any postoperative fevers or temperatures that they might have. And very rarely we will use stronger pain medications, and we will do that on a case-by-case basis. And we will wait to dose those stronger medications, if needed, to optimize minimizing the side effects. 

Bill Klaproth: So then obviously, I think we know what the goal then is of cleft lip and palate surgery. But generally, what is the outcome then that you are searching for from a professional standpoint?

Dr. Rania Habib: Our goal is to restore form and function to the child. Surgery can provide significant improvement in the child’s appearance, quality of life, the ability to breathe, eat and talk. Lip closure involves rearranging the skin, muscle and other tissues in the lip into a more correct position to close the gap and improve function. The palate surgery is done to improve primarily swallowing and speech, and the oral maxillofacial surgeon will discuss with you the multiple surgical techniques that are potentially needed to accomplish these goals. 

Bill Klaproth: So form and function is really what you’re after, which is really the end goal of that. So speaking of that end goal of surgery and treatments, then what is the final end goal that you’re searching for? 

Dr. Rania Habib: So, to reiterate, obviously form, which we say appearance. We want that lip to look beautiful. We want it to be even; we want it have minimal scarring. We want the nasal sill of the nose to be even so that both nostrils have an even size. We want to try to minimize in the palate any scarring so that the palate can elevate and they can speak and they can perform swallowing. And this allows the child to grow and develop normally with minimal physical signs of the initial anomaly. So our goal is to do this as aesthetically as possible to try to return it to what it would look like as if they had never been born with a cleft lip or palate. Often, it’s just a small, little scar that is visible. Cleft lip and palate surgeries have evolved over the years, and many children who undergo these procedures go on to lead healthy, normal lives with minimal evidence of their initial condition. The key is early intervention and the expertise of a dedicated craniofacial surgeon working as part of a multidisciplinary cleft and craniofacial team. 

Bill Klaproth: And I think that’s really important to mention. At that prenatal visit, once you tell them, “We can repair this, we can fix this, and this child will most likely lead a normal, healthy life,” like you just said, I bet that really does give them comfort and address their fears. Is that right? 

Dr. Rania Habib: That’s what we’re hoping. And so we are alongside the parents and the family the entire time. Obviously, there may be apprehension as to the number of surgeries needed to correct the different anomalies that exist with cleft lip and palate. So, the alveolar cleft, if there’s growth restriction in the mid-face and now their bite is off when they’re older, and we need to do jaw surgery to correct that bite, we’re going to walk them through every stage of that. Working with the multidisciplinary team, we’re also going to try to attach any other surgeries that they need from other surgeons – let’s say pediatric ENT or neurosurgery – to those same procedures to minimize the amount of time that the child is undergoing anesthesia. Safety is our utmost concern, and also decreasing the fear and the apprehension of the family. We don’t want to keep the child out of school; we don’t want the families to have to take time off from work. So, we really try to optimize all of those outcomes with the surgical intervention to ensure that the family is having the best possible experience because we know it’s extremely stressful. 

Bill Klaproth: Yeah, that is for sure. And like you said, you want to return the child back to normal as soon as possible, especially since this is more than just a physical aspect. There’s a psychological aspect to it too. You’ve got the look of it, and it could affect speech, so it could affect the socializing of the child as well. There’s a lot of stuff wrapped up into this. So, it’s really important that these things get taken care of right away and through a qualified OMS. Dr. Habib, this has been great talking to you about this. As we wrap up, anything else you’d like to add? 

Dr. Rania Habib: When we were talking about the timeframe, we did miss a few of the surgeries. So, I’d like to reiterate that. We talked about cleft lip, cleft palate and the alveolar bone graft. The alveolar bone graft is the cleft that exists in the upper jaw. We time that based on the eruption of teeth and the age of the child. We also may see that they need jaw corrective surgery, which is known as orthognathic surgery. And that surgery is aimed to correct the conditions of the jaw and the face, make sure the teeth come together well so they can articulate well, but that they can actually chew. And that’s usually performed during the teenage years, after the child is finished growing. Then we want to address the nose and the lips. So, this is the rhinoplasty, which is the nose job, and the lip revisions, which may be scar revisions, or maybe tweaking little anomalies in the lip that don’t quite look even. These surgeries are done to refine the nose and the lip and are typically done alongside the orthognathic surgery. But some surgeons may also wait until the bony work is all completed, and they do these as the finishing touch surgeries. Let’s say a child is being bullied or they’re not happy with their scar in the childhood years, we may opt to do the lip revision early to try to minimize that type of teasing. And the purpose is again, both cosmetic and functional, aiming to give the child the best possible appearance and restoration of form and function. 

Bill Klaproth: Yeah, so there could be a series of follow-ups and potential surgeries following the initial cleft lip and/or palate repair. And it sounds like generally, there is. 

Dr. Rania Habib: There is. And we’ll definitely talk about that in that prenatal visit and with that first cleft team visit. And they will get an outline of all these surgeries and what to expect. We do find that anticipatory care really helps ease the anxiety of the parents because now they understand what to expect. 

Bill Klaproth: Yeah, but I think the hope is there, like you said, this is something that can be repaired and the child will go on to live a normal, healthy life. 

Dr. Rania Habib: Absolutely. We tell those families, your child should be able to sing, jump, do any sport they want and be absolutely normal, just with a little scar. And of course, we’re talking about the non-syndromic patients. If it is a syndromic patient, meaning there are other medical conditions accompanying the cleft lip and palate, we are going to help coordinate care of those conditions as well on that multidisciplinary cleft and craniofacial team. 

Bill Klaproth: Yeah. Well, thank you for that. That’s a great way to wrap it up. Dr. Habib, thank you so much for being here. 

Dr. Rania Habib: Thank you. This is one of my favorite topics, and it’s a real joy to be able to help parents ease the anxiety a little bit when they get this diagnosis. So, thank you for having me. 

Bill Klaproth: Yeah, you bet. Absolutely. Once again, that is Dr. Rania Habib, and for more information and the full podcast library, please visit MyOMS.org. And if you’ve found this podcast helpful, please share it on your social channels, and don’t forget to subscribe. 

Thanks for listening.