Jun 16, 2020

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.

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