Caitlin Whyte (Host): Cleft lip and cleft palate are birth defects in a baby's lip and mouth. But how much do we really know about these health issues? Joining us to dive deeper into this topic is Dr. David Lobb, a plastic and reconstructive surgeon with specialized training in Craniofacial and Pediatric Plastic Surgery right here at Prisma health.

 This is Flourish, a podcast brought to you by Prisma Health. I'm Caitlin Whyte. Well, to start us off today, Dr. Lobb, can you tell us what is a cleft lip and palette, and is it something common?

Dr. David Lobb: Absolutely. Cleft lip and cleft palate is essentially a gap that is the result of missing tissue, either at the lip or at the palate, and the palate is the roof of the mouth. It separates your oral cavity or your mouth from your nasal cavity. And a cleft lip and palate together is one of the more common congenital conditions that occur, and it's the most common craniofacial, meaning facial and head and neck type congenital problem that we treat. So, it's something that we treat regularly. We see frequently in our practice. And it's something that occurs, we feel, because of some particular risk factors associated with the child or the parents, but we don't actually for 100% understand why a cleft lip or palate occurs. It occurs in about 1,000 to 2,000 babies on average that's combined cleft lip and palate with slightly more common presentation being a cleft lip with a cleft palate than a palate on its own, although that can occur. And we feel that the risk factors can be separated into the genetics of the child or the parents, although oftentimes it's just a one off and there's no family history of a cleft of the lip or the palate or both.

There are some modifiable, meaning you can do something about them, some modifiable risk factors during pregnancy that may increase your risk of having a child with a cleft lip or palate. And those include smoking and drinking alcohol while pregnant. Obesity is another potential risk factor for having a child with a cleft lip or palate. And then, absence of prenatal vitamins, particularly things like folic acid during pregnancy have also been shown to increase your risk of having a child with a cleft lip or palate.

Finally, although not so commonly used anymore, but some of the anti-seizure medications, particularly phenytoin and other medications related to seizure control have also been shown to increase the risk of having a child with a cleft lip or palate.

Host: Well, it sounds like the causes are still pretty unknown for the most part, but what do we know about how a cleft lip or cleft palate develops?

Dr. David Lobb: Caitlin, you're right. I think in general, while we don't know that there's a specific cause in most patients, and we have identified several risk factors as we've talked about, we do know when this happens during development. The face is developing around the sixth to eighth week of pregnancy, so very, very early on, and sometimes even before the mother may know that she's pregnant. The face has an interesting development profile and what essentially happens is that several parts of the face are formed separate from one another and then they coalesce or converge at different areas. And when we've studied the nature of cleft lip or palate in animal studies, we note that there tends to be consistency amongst those animal studies where a cleft forms in those areas that are supposed to unite and form what we know is the face.

So generally speaking, the face kind of moves from the side towards the front and coalesces along the front and those convergence zones tend to be where we see a cleft lip or palate, so that we know that if there's some alteration in that development profile, if there's some reason why the cleft lip, for example, can't unite along that fusion plane, you have a cleft lip. And also, we know that the palatal shelves, so there's generally speaking two shelves on either side of the mouth that descend and come down to unite, kind of like a drawbridge closing. And if that drawbridge doesn't close and those two shelves, each on one side and the other side of the mouth converge and unite, then you may encounter a cleft of the palate there as well.

Host: Well, you mentioned some genetic factors earlier, but who is most at risk then for a cleft palate or cleft lip? Is there a way we can tell that early on?

Dr. David Lobb: I sometimes see patients in my office, and the mom is pregnant with her second or third child. And I'm seeing the patient because they have a cleft of the lip or palate. It's a common question that those parents have, you know, "Will my child that I'm about to have, will they have a cleft of the lip or palate as well?" And unfortunately, it's those families that have the highest risk of having another child with a cleft of the lip or palate. So, that we know that there's some genetic basis for a cleft of the lip or palate. And it's those families who already have cleft in their history. Either the parents are affected or they have a sibling that's affected, those tend to be the patients that are at higher risk for having a cleft lip or palate.

Host: Is it something that could be seen like in an ultrasound? When is this typically diagnosed?

Dr. David Lobb: Most commonly, diagnosis occurs after the child is born. And that's not necessarily because the ultrasound scans are poor quality or there's an issue with prenatal care. But you can imagine that this cleft, particularly a cleft of the palate, can be rather challenging to see in a small child when they are moving during the ultrasound. Now, what I will say is that if a cleft of the lip or palate is seen on an ultrasound, it's incredibly helpful because it gives us time to prepare the parents for what's coming up and to give them information about what to expect when the child is born.

I think another important thing to note is that should a patient's parent present to me with a prenatal diagnosis of a cleft lip or palate, we have to counsel them to say that that ultrasound scan is a scan in time done with the very best of care, but may not pick up all the things that we would need to identify in that child after they are born. And so, we take a little bit of a hedged approach and say to the parents, "It appears as though your child might have a cleft lip and palate," and that's what the imaging suggests. But when the child is born, we're certain to, you know, make a proper bedside examination and assessment, and really give you some really good detail about what we actually see and what the reality is and how we're going to manage things.

Happily, a cleft lip and palate is usually an isolated finding and the child is otherwise completely healthy. And so, that the only thing that we have to deal with in the very early neonatal period is making sure that the child grows appropriately, is well cared for, and is fit for upcoming treatments.

Host: Great. Well, let's talk about those treatments now. Is it always surgery or what are our other options?

Dr. David Lobb: So, what we haven't discussed is the spectrum of cleft lip and palate. Oftentimes, patients present with a cleft of the lip and the palate, but there are occasions where only the lip is involved. And even within those patient group where the lip is involved, sometimes that lip is only very slightly involved. And so, they have just maybe a little bit of a peak at the junction between the red lip and the skin lip, it's called the vermilion, where we would see it and diagnose it. But there have been occasions where not doing surgery in those situations is the appropriate thing to do.

But for the most part, yes, you're right, surgery is the mainstay therapy for a patient who presents with a cleft lip or a cleft palate. When a patient presents a cleft lip and palate, that lip may be involved on the left or the right. It's most commonly on the left. It may involve the gum line underneath the lip where your teeth emerge. And then, it may involve the palate. And those three components are treated by surgery at different time intervals. So, as I said, if I meet a patient very soon after birth, or indeed if I meet the patient's parents prenatally, and then we see the patient after birth, our first job is to make sure that the family is well supported, have appropriate access to good nutrition and care for the child so that that child can thrive in the early postnatal period and grow and become resilient and healthy enough to go through the rigors of surgery, and the first thing that we usually do if a patient has involvement of the cleft lip and the palate is address the lip.

We generally wait to about three months of age. It can be done within a week, and it can be done later. Three months appears to be a sweet spot for doing the surgery because the child has grown from birth, is now robust and healthy, and we've made sure that there aren't any other congenital or other problems identified in the postnatal period that might impact the safety of surgery. And the child has big enough that we can intervene safely from an anesthetic perspective and from a technical perspective to repair the lip so that we get a really nice result for the child long term. If we do it earlier, it may be technically more challenging. And if a surgery is technically more challenging, it may come with a slightly increased risk of having a suboptimal result. And so, the child might need some revisions down the road, although I must say that there are expert technicians throughout the country that do choose to do it at an earlier age, although it's not common for the reasons that I've just said.

And then, if we do it later than three months of age, then we may be putting the child at an unnecessary weight from a technical and safety perspective. Although what should be noted is that when we do mission work abroad, oftentimes we're treating kids that are much older because they haven't had the similar access to good high quality cleft care that we're pleased to provide here at Prisma. And so, when we treat those kids who are much older, we still get really excellent results and the patients do very well for it.

Subsequent to repairing the lip, we tend to focus on repairs at the palate between nine and 12 months of age. Why later, you might wonder. And the real reason for this is, although one of the more concerning and potentially frustrating components of having a child with a cleft palate soon after birth is their inability to feed or nurse in the standard way, that's not to say that they can't, but they may have more challenges. Really, the way that I approach a repair of the palate is to focus on really excellent speech outcomes in the long run. You see, the back of the palate is the soft palate. So at the front of the palate, towards the front of the mouth, is the hard palate, and that's the roof of the mouth, as I said before. But at the back is a soft palate structure, which has very important muscles for speech. And because of the cleft, those muscles are abnormally positioned, and abnormally oriented, and we need to pay special attention to getting those situated appropriately so that the child can develop excellent speech.

One of the unfortunate things about substandard repairs of a cleft palate is that the child subsequently goes on to have substandard speech. And that has all sorts of implications on the child's quality of life. You can imagine a three or four-year-old going to school having inadequate speech and not being able to progress or interact as well as they ought to be able to.

And so, the reason to delay surgery at the palate until about nine to 12 months of age is because what we want is for the facial structures to mature sufficiently that we can really execute a really good surgery without introducing so much scarring that that midface may not grow appropriately when the child grows. If that midface doesn't grow appropriately, you may be introducing the need for more surgery to correct that growth discrepancy or more surgery to correct the midface and the teeth alignment down the road when the child is fully grown. Neither of those things are always avoidable and sometimes revisions are required even with really excellent cleft palate surgery.

And I'm thinking here in particular when both sides of the palate are affected, both the left and the right, and that's what we term a bilateral cleft palate. If that's the case, then oftentimes there is some discrepancy of the facial growth and sometimes those patients go on to have jaw surgery when they're a little older.

But anyway, getting off track there a little bit, back to the whole reason why we wait until they acquire good facial growth in the early months, the reason that we don't wait any longer, you may say, "Okay. So, you wait nine to 12 months, why not wait two or three years?" Well, if we wait two or three years, then essentially what happens is the child starts to develop speech, usually beginning around age one with abnormal equipment and abnormal musculature, and they learn to try and adapt and cope. And then, when we repair them, they've formed habits and maladaptive coping strategies that make it difficult for them to acquire good speech, even with good surgery. So, there's a component of learning speech that is related to the equipment that you have at the soft palate, which we can address surgically.

And then, there's a component of speech acquisition related to your development. And if you wait too long and you use abnormal or different equipment, then you may learn behaviors that are really quite challenging to unlearn down the road. And so, your speech may still be inadequate or suboptimal.

Host: Thank you for that, doctor. Now, when it comes to breastfeeding, I know you mentioned that earlier, how does that affect babies with cleft lip or cleft palate?

Dr. David Lobb: That's an excellent question, Caitlin. Thank you. The fact is that we know that, in general terms, breastfeeding is very good for child nutrition. It's also good for psychosocial development and bonding. And what I want the audience to be aware of is that breastfeeding can still be done in patients who have a cleft lip and palate.

The caveat to all of that is that it may be more challenging. And it may be challenging to the point where insufficient nutrition can be provided to the child through traditional breastfeeding techniques alone. And so, using breast milk that has been pumped and supplied to the child through a bottle with non-nutritive breastfeeding to follow at the end of a meal so that bonding and psychosocial elements are addressed is something that I advocate for if possible.

Host: Well, definitely a lot to consider there, doctor. Thank you so much for that answer. I've got two more questions for you, which we've touched on a bit already, but just to dive a bit deeper as we wrap up the episode here, what happens if you don't fix a cleft palate?

Dr. David Lobb: I think our experience abroad demonstrates the necessity for a repair of the cleft palate, despite some of the risks associated with surgery. You see, if a child doesn't have their palate repaired, as I said earlier, their inability to acquire appropriate speech can really significantly impact their quality of life, their ability to achieve within a social environment, their ability to learn and conduct themselves in school, their ability to acquire gainful employment in a way that they wish. Speech is something that is paramount in the treatment of patients with cleft lip and palate. And we focus a lot of our time and energy in trying to optimize those outcomes for patients.

I have had patients' parents say to me that they really would rather go without surgery if it were advised, and I understand that this is something really quite challenging for a family to go through. I operate on children frequently enough to see that it is really quite emotional for patients parents to place their children into our care for such an important period of their life and we're very grateful for that. We're grateful for their trust, and we spend a lot of our time and energy and our commitment to trying to get really excellent results for the patients, because it's what they deserve.

Host: And are there any other health issues associated with cleft lip or cleft palate that parents should keep in mind?

Dr. David Lobb: One of the commoner questions I get asked in a patient with a cleft lip or palate is, are there other associated diagnoses? And aside from some of the physical manifestations that we would ordinarily identify at birth. Unfortunately, there does seem to be a slightly increased risk of neurodevelopmental issues in patients with a cleft lip and palate.

And for that reason, it's really important that these patients get managed in a cohesive cleft team. The ACPA, which is the American Association of Cleft Lip and Palate, mandates certain criteria that qualify a group of practitioners to be able to provide cleft high quality cleft care. And within that team environment are speech pathologists, pediatric dentists, orthodontists, cleft surgeons like myself, occupational therapists, and many, many others, including psychiatrists and psychologists who are well-adapted and well -adept at managing patients who have craniofacial anomalies, including cleft lip and palate.

And I think If parents are concerned about their children having additional diagnoses in the neurodevelopmental spectrum, then I think it's important that they reach out to one of those cleft teams and ask for an evaluation that's appropriate so that the child can be fully taken care of and that all of the available resources can be utilized to get the best outcome for those children.

Host: Well, thank you so much for joining us on the show today, Doctor, and for all the work that you do. For more information and other podcasts just like this one, head on over to prismahealth.org/flourish. This has been Flourish, a podcast brought to you by Prisma Health. I'm Caitlin Whyte. Thank you for listening.