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Interviewer: We're here with Dr. Barbu Gociman, a craniofacial surgeon and the Medical Director of the Cleft Center here at the University of Utah. Dr. Gociman, when does a parent usually find out that their child might have a cleft lip or a cleft palate?

Dr. Gociman: Here in the United States, most cleft lip patients are diagnosed with their condition during pregnancy. So the parents will know that the baby is going to be born with a cleft. By contrast, when the babies have only a cleft palate, usually the diagnosis is not obvious on ultrasound and is not made prior to birth. So the diagnosis is made in the first day of birth.

Interviewer: So what are some of the things that a parent needs to be doing those first few months with their child to make sure that . . . how early are they getting surgeries? What do they need to be doing the first couple months?

Dr. Gociman: Considering what the problems are, as we said, the lip, the gum, the hard and soft palate are involved. One of those structures or all of them, you can imagine the baby will have difficulty with feeding, with suckling. If a cleft lip is present, they cannot create a seal around the nipple. If there is a clefting of the palate, the babies will have a very hard time developing suction. Specialized devices are needed to provide adequate caloric intake, meaning adequate amount of milk or formula to keep with the needs of the newborns.

Interviewer: When does the first surgery usually take place?

Dr. Gociman: For a cleft lip patient, if we assure adequate nutrition, there are no other anomalies associated with the condition, and the baby grows normally, the timing is approximately three months of age. And the reason for that is the baby has grown sufficiently enough to withstand the anesthesia without any additional risk, and all the structures that are involved in the cleft are bigger and stronger, and the operation is performed easier, with less risk of things breaking down or having other complications during the surgical procedure.

Interviewer: What happens during those first three months while you're waiting for the child to get stronger? Who should they be visiting?

Dr. Gociman: Here at the University of Utah, we have an excellent system in place to assure that all the needs of cleft patients are met. For a cleft lip patient, the diagnosis is most of the time made prenatally, so the parents already had a prenatal visit with the nurse coordinator, with the physician assistant in charge of the cleft team, and with the craniofacial surgeon that will perform the repair. So they already have a good idea of what is coming.

Once the baby is born, especially if it's born here, close, at the university hospital, or even at a hospital in close proximity, a cleft surgeon will visit with the family, evaluate the exact anatomy of the cleft, and start with the process of treatment. And this involves two major elements in the first three months of life. One is assuring adequate feeding, and, as I said, there are different modalities through which this is achieved with specialized nipples, specialized bottles, specialized techniques of holding the baby to prevent regurgitation.

And the second thing that is as important is what we called molding. We are trying to achieve normal anatomy. Due to the lack of continuity in the muscles of the lip and the palate, the elements that compose those structures can migrate apart, and the anatomy becomes very difficult to recreate. So in those first three months of life, we attempt to bring all those structures together. We try to reshape the nose, the lip, the alveolus, and the palatal shelves.

Interviewer: Seems like the treatment of cleft lip and cleft palate has more than just the surgical components and just the restructuring. There's also speech. There's also feeding. There's also socialization. What sort of resources are available to a new parent here with the cleft team?

Dr. Gociman: We have a comprehensive cleft team. First, we see the patient right after birth to assure adequate feeding and the molding has been started. And at the same time, we schedule a clinic visit with the cleft team so the family gets a chance to visit with all the members of the team. And each member has an important role in cleft care. So the team is made up of a cleft craniofacial surgeon, an ENT surgeon, pediatric orthodontist, a speech therapist, feeding specialist, and a social worker. So the reason for that is to assure that all the problems encountered in cleft are addressed from the beginning and the family has a complete understanding on all the steps and all the elements that need to be addressed.

As such, the cleft surgeon will talk about a cleft repair, the sequence of different operations based on the particular anatomy of the patient.

The ENT surgeon will talk about hearing. Most cleft babies have a hard time with draining the ears and have significant infections of the middle ears and require tubes early on. Also, they have to assure later on that the speech is adequate, possibly perform speech correction surgeries down the road.

The orthodontist, as I said before, initially will have a very significant role in performing the molding and then, later on, in assuring eruption of the teeth, orthodontic work, and help with any orthodontic operations.

The speech therapist will be there, initially, to help with feeding, assure that the method that is most effective is used, and then, later on, as the speech starts developing, address any problems, involve the patient in speech therapy, and so forth.

Finally, the social worker is there at all steps of cleft care just to address any social problems that may arise, and we have quite a long number of issues that arise in our cleft patients. So it's a very useful component of the team.

Interviewer: So I understand that cleft care can be a long process. It's years and years of treatments and procedures. But it seems like this type of team can really help set a child and their family on the right path and get them started and give them a step up.

Dr. Gociman: It has been shown over and over again that having a cleft team and having a professional cleft team makes all the difference. This is a standard across the United States. We are proud to have the largest, oldest, dare I say, the best team in Utah and in surrounding states. So we are getting patients from all the states around us. We pride ourself with our results, with innovation. We publish a lot. We are actively involved in research. And we are always trying to improve our technique and our results. We are very critical with our results, and we are trying to achieve perfect outcomes every time.

Interviewer: So what's new in treatment for cleft lip and cleft palate? We'll be covering that today on The Scope.

We're here with Dr. Barbu Gociman, a craniofacial surgeon here at the University of Utah and the Medical Director of the Cleft Center. Dr. Gociman, what is the usual treatment plan for a child born with a cleft lip or a cleft palate?

Dr. Gociman: We have a unique way of treating cleft children at the University of Utah, and we are very proud of our treatment modality we developed over years. It was a progression. So traditionally, in the United States, the sequence of treatment for a patient with cleft lip and palate is cleft lip repair at around 3 months of age, cleft palate repair at around 10 to 12 of age, alveolar cleft repair at around 6 or 7 years of age with bone grafting of the alveolus, orthodontic work followed by any orthognathic operation usually at facial maturity, which occurs at around 16, cleft rhinoplasty at around 18. That's around five surgeries given that no problems are encountered and no other issues with growth develop during the treatment protocol.

Interviewer: So my understanding is with treatment of cleft lip and cleft palate, the definition of success is to minimize the amount of surgeries. And my understanding is that you guys have a new, well, a relatively new procedure that might actually help reduce the amount of surgeries necessary. Do you want to walk me through that?

Dr. Gociman: It not necessarily minimizes the core operations, but it minimizes, in our mind and from what we've seen so far, the number of additional operations that usually are not counted as the main operations.

So we do the cleft lip repair at around 3 months of age, and at 10 to 12 months of age we repair the palate, but only the soft palate. The reason to repair the soft palate at that age is that's when the speech starts developing and not repairing it could lead to development of abnormal sounds that are very hard to correct later on.

At around two years of age, so one year later, we close the hard palate and the alveolus in one operation, and we bone graft both structures. So this is the novelty of our protocol. So we think by achieving that we reestablish a normal anatomy. Normally, the hard palate contains bone grafting, which in a standard treatment modality is repaired only with the soft tissues. And we also achieve bone grafting at a much younger age when the cleft elements, bony elements are much closer to each other. So we think the efficiency and the efficacy of the bone grafting processes is much, much higher. We need much less bone, and, again, the elements are much closer, so the gap that you are trying to graft is smaller. So we think that we have much, much higher success. This has been possible due to the availability of a series of cadaver bone grafts that are sterilized and synthetic bone elements that we all mix together so we do not need to use the traditional hip bone graft that was used in the traditional protocol.

And then no operation unless the patient will require orthodontic work and orthognathic surgery. So far we did not need to do those. And finally, the final rhinoplasty will be the same as in the traditional protocol. We have a different philosophy at the university. We perform the rhinoplasty at around 14 years of age. So we want kids that, once they go to high school, to have the shape of the nose fully corrected. We think that even when you do a little bit earlier and the facial growth is not fully completed, it's almost there, and then the psychological benefit that they gain from the earlier operation far outweighs the small risk.

Interviewer: So with this new procedure, what can a parent expect for their child's outcome?

Dr. Gociman: We hope that less operations, much more stable maxilla that will mean less orthodontic work and less orthognathic procedures and overall a happier child. The hardest timing for cleft kids is when they are older and they have the big orthognathic operations, and it is very hard for them. Imagine you have to wear the halo device for three months walking around. So if you eliminate that operation, it's a huge benefit. So in our mind that is a huge step forward, and we hope that we will be able to demonstrate that most children that go through our protocol do not need that type of operation down the road.

Interviewer: You notice that your child is starting to develop a flat or misshapen head. Is that something to really worry about? And what should you do? We'll discuss that with Dr. Barbu Gociman next on The Scope.

Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Interviewer: Dr. Barbu Gociman is a plastic surgeon who specializes in pediatric plastic surgery at the Craniofacial Program at the University of Utah Health Care. If your child is showing signs of a flat or misshapen head, could be a couple of things going on. We're going to find out more about that right now. Is that always something to worry about?

Dr. Gociman: We see two different patterns. One would be the parents are really worried, the other one, the pediatrician is very worried. In either instance, there are two different causes. The more common deformity that you see is actually acquired after birth, is due to positioning in the uterus. As babies, we have a position of comfort. That is whatever the position of the uterus is. So once the baby is born, they tend to reproduce that position and preferentially just lay on one side.

As the brain pushes the bones and the head keeps growing, because the baby preferentially lays only on one spot, that becomes flatter and flatter. The rest of the cranium grows, and suddenly at three, four, five months of age, your baby has a flat head. Usually, it's on the back of the head one side. Obviously, there's a different degree of severity. We say usually about 1 in 300 babies has a very severe deformity that will need some time of aggressive management. That is the least severe problem because it's just an easy fix. Basically, you have the baby not lay on that spot. We will have to have the parents aggressively trying to rotate the baby from that spot. The challenge is the baby will always want to turn back into the same position.

Interviewer: How do you prevent that? What are some strategies you have to prevent that?

Dr. Gociman: Unfortunately, there's no one perfect strategy. All the pillows and things that try to make it through the FDA were to kind of reposition the baby in the crib did not make it because of safety hazards. They can act as chokers, basically. So there's no good device that will keep the baby from rotating so it's just the diligence of the parents. Some parents will be more diligent than others.

Interviewer: And you just have to go back in there and just . . .

Dr. Gociman: Keep rotating. Obviously, once the baby is growing a little bit more, more tummy time, more sitting position and that will alleviate the problem.

Interviewer: Gotcha.

Dr. Gociman: If the deformity is really severe, then we recommend a helmet, which the helmet is worn for 24 hours a day, basically. That will take off all those problems where the parents will have to go repeatedly and change the position.

Interviewer: The harm is not only a misshapen head, but it could actually affect the brain?

Dr. Gociman: There's absolutely no influence of the developing brain. It's just an aesthetic problem.

Interviewer: Oh, really? Okay. Well, I guess that's a relief on some level.

Dr. Gociman: This is the more common problem of a flat head. Unfortunately, there is a much more severe problem that could lead to a flat head or misshaped head. The technical name is craniosynostosis, in which one of the sutures, which normally separates the different bones into the cranium, fuses prematurely. The sutures usually fuse when we are in our 20s or 30s. If a suture fuses prematurely, either in utero or as a very, very young baby, the head will be forced to compensatorily grow and you will deal with a really misshapen head.

One suture can be fused, or multiple sutures can be fused. The more sutures that are fused, the more severe the deformity, and the higher the chance that misshapen head will put pressure on the growing brain and lead to developmental problems. That is a condition that will require surgical intervention. We do some surgical intervention, minimally invasive, in which the operation is done in conjunction with your surgery that is much quicker and the patients recover much easier.

We also, for more severe forms or for delayed presentation, the patient will require really very, very significant operations and the patient will require prolonged hospitalization, intensive care unit care after the operation. So, definitely, the way to tell the difference between the two, although we highly have a suspicion on physical exam, is to do a CT scan. The CT scan will tell us exactly if a suture is fused or not. We'll know 100%. We usually, on clinical exam, we can have a 90% to 99% suspicion of if we deal with one or another. Usually, for positional plagiocephaly, it's very easy to make the diagnosis just on physical exam.

Interviewer: That's the one where sleeping in the same position too much . . .

Dr. Gociman: And which is the more common one.

Interviewer: Gotcha.

Dr. Gociman: In order to make the exact diagnosis, we'll be happy to see you to our Craniofacial Program at the University of Utah, to see you and discuss what the problem is and what the next steps will be.

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Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You are listening to The Scope.

Interviewer: You found out your ultrasound that your child possibly might have a cleft lip. What should you do after that? What's going to be coming up and what are some things you need to know? Dr. Barbu Gociman is a plastic surgeon and a specialist in pediatric plastic surgery at the Cranial Facial Program at University of Utah. First of all, what is a cleft lip exactly? What's going on?

Dr. Gociman: Yes, it's not an extremely easy question to answer. It's anomalous and biologic developmental problem in which the forming face and particularly the lips, do not come together. It can be associated with a clefting of the palate. There are different degrees of clefting present. What a cleft means is basically an opening where, instead of the tissues coming together, they do not, and the bigger the defect, obviously the wider the gap between the elements that should come together.

Interviewer: So in the ultrasound meeting, they may indicate the there is a cleft lip possible. It could be very minor to very major. And what's that extreme?

Dr. Gociman: Yes, exactly. There is a whole spectrum. It can start with just a furrow that you can see on the lip which is not going to be present on the ultrasound. To mind comes, Joaquin Phoenix as an actor that has that deformity, as a personality that you can always look up. From that point you can have different degrees of deformities, just small degrees of notching in the lip. It can go all the way to the nose and extending to the alveolus, which is the bony part carrying the teeth, and all the way into back of the palate, which is the roof of the mouth, can be completely clefted.

Interviewer: And do the ultrasounds, do you have a pretty good indication of how bad it's going to be at that point? Or you could a parent be even surprised even more after the birth?

Dr. Gociman: Yeah, the ultrasound, obviously is a good modality to diagnose, but as any diagnostic modality, it's not 100%. So you'll not completely know the degree or exactly what structures are affected until you actually see the baby and you can examine him.

Interviewer: And that degree can mean the difference between maybe a single operation or many operations through the child's childhood, up until 18, 19 years old.

Dr. Gociman: Yeah, exactly. So there is a stepwise process that has been validated over the last 50 years or so, and obviously it continues to undergo refinements in how we treat these patients. So if only the lip is involved, usually one operation is enough to correct the deformity. The sequence of treatment for the more severe deformities involving the lip and the palate would be we start taping or do what we call a nasal alveolar molding, which would be reshaping of the structures and bringing them in a more anatomic position to facilitate the surgical repair. That is done by our orthodontist, Dr. Duane Yamashiro, and requires multiple adjustment. That will last for approximately for the first three months of life.
We usually do the lip repair around three months of life. At the same time we examine the palate, if the palate defect is really wide, we insert a palatal prosthesis, which is an obdurator that will facilitate feeding.
The second operation is done at around 10 months to one year of age, which is the soft palate repair. That is done right before the speech develops. We exchange usually the palatal prosthesis at the time if a large hard palate cleft is present. We repair the hard palate at around four years. At six years of age we do a repair of the clefted alveolus with bone grafting, if the baby has that problem. And finally we will do a formal rhinoplasty operation at the late teenage years if the nasal deformity is still persistent.

Interviewer: I would imagine one of the major concerns parents have is physical appearance. It sounds like there's also a lot of functional things that aren't going to be right if these surgeries don't happen. But as far as physical appearance, can you bring somebody back to the point where you couldn't tell they ever had a cleft lip?

Dr. Gociman: Unfortunately to completely, scarlessly repair somebody, it's not possible. We as humans we heal by scarring, so you'll always see a scar. The quality of the scar can be from a very, very thin line, which it's imperceptible to a person that is not very attune to what he's looking at, to a fairly thick scar that will require revisions or steroid injections or scar treatments. That is at the level of the lip.
As I said, because the nose is mis-shaped by the deformity, usually the eyes are going to be really drawn to that deformity. That's why we put a lot of effort in reconstructing the nose in a very anatomical fashion to try to avoid that from happening. We do the cleft lip repair at three months of age, just because we want the parents and everybody that comes in contact with the baby to see a normal baby. We do not want them to get used to the clefted baby.
All the other functional portions, the palate actually, functionally, the palate repair is much more important because the palate is involved in speech, is involved in swallowing. So functionally that is more important. But what we see, and it's human, we judge, where most of the people, the lip repair is the most important step and that is why we do it first, and that's why we pay a lot of attention to it.

Interviewer: I'm sitting here, hearing this and in a way my heart is breaking for parents that find out that this might be something that their child will have to face. How do you even address that? What do you say? How can people find comfort?

Dr. Gociman: It's definitely not an easy process. Fortunately, especially nowadays there are all the support groups. We can always put you in contact with the families that went through with our group. That brings a lot of comfort. It's very difficult, especially the first moment when you feel like you are all alone confronting with such a big, challenging problem. But our Cranial Facial Program at the University of Utah has the answers and we are very happy to address all of them multiple times. Our phone number that you can reach us is 801-581-7719. The Cranial Facial Center is the way to go.

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