Children diagnosed with cleft lift and cleft palate will go, on average, through 5-6 surgeries until they reach 18 years old. They will develop a strong and special relationship with the surgeon that will help them have a normal life, with a normal capacity of speech, with a very close to normal physical aspect. It’s very important that this doctor is highly skilled in this sort of diagnosis and surgical treatment. All these aspects are explained in the following text by Prof. Dr. Hakan Ağır, an ACIBADEM expert, and a very dear friend with… superpowers for hundreds of children whose lives he has touched and changed.
Prof. Dr. Hakan Ağır: We first operate on these patients when they are three months old. The first operation is the lip repair, but it depends on the general health of the baby. Sometimes we delay the surgery until 4 months, not more than 5 months, but usually my average operating time it’s 3 months. In between 3 months to 4 months, the first operation is the lip repair. And maybe we add the anterior palate repair. The second operation, if the child has the palate, as well, combined with the lip, then the palate repair will be around roughly before the age of one. In the world there are different protocols, different centers, different surgeons preferring different times to operate on the cleft palate. There is not a precise consensus on the timing of the palate repair. Some surgeons prefer, like me, at early age, like 6 months to 7 months, depending on the patient’s status, of course, and my average time is 8 months of age, but in some centers is 1 year of age. And all the reports, all the research, retrospective research, all review studies prove that the surgery for the palate repair must be done or finished before the age of 1. Either 9 months or one year of age, doesn’t matter, finish it when the kid is one year of age because then the speech outcome is near to perfection. 80 to 85% of these kids, if the surgery is done very well, in good hands, in skilled hands, will not have a speech problem. This will happen only in the 15-20% of the kids. We are actually talking about a speech disorder. The people are getting it wrong; they think that these kids will not speak at all. No, they do speak, but their intelligibility is different. You hardly understand what they are saying, you ask them to repeat sometimes, because some of the letters are produced in the very back of our mouth, in the soft palate. If there is any insufficiency, then there will be a speech disorder and the intelligibility will be very low. So, I am emphasizing, underlining the sentence, these operations must be done by the skilled trained surgeons.
Prof. Dr. Hakan Ağır: That means that after your plastic surgery training, or oro-maxilar-facial training, you should have a post-graduate training of at least one, preferably two years, and when you come back from your training, you must be working in a unit which quite often does these surgeries and follows these kids. Americans say that as a standard a cleft surgeon must see 20 cases per year at least. 20 new cases. If you do this surgery once a year or twice a year, don’t do it!
Prof. Dr. Hakan Ağır: So, a child with a cleft lip and palate will have 2 operations in their first year, but anomaly usually differs, every single baby is different. They are different individuals, so you can’t compare oranges with apples, even they are both fruit. Of course, there are some common things, like the operation timing and some procedures, but they all differ, it’s a part of the protocol. That’s why I’m saying that parents must know that this baby should be observed by a specified cleft team or cranio-maxilar-facial team, oro-maxilar-facial team and this is done under protocol which is standardized and must be very like that the ones that they use in the modern world. The parents must be very cautious about the team and the center when they decide for the baby’s treatment. And this is very long run up to the adult age. For every single child there are different operations until the age of 18 or 20 years old, when they are mature. In one of the studies that I was a part of, published and cited hundreds of times, we found that these kids have 5-6 operations in their whole life, as an average. If it is above 10, that means something is wrong. But, normally, in the big centers, in good hands, these numbers are not higher, the deviation takes no more than 2-3 operations. But, of course, the severity and the involved areas of the deformity often determines the number of surgeries. Some of these operations are compulsory, like lip repair, palate repair, bone transfer to the upper jaw. And these three surgeries are a must, to say the least. Additionally, these kids have, at the preschool ages, some touch-up surgeries, revision surgeries for the scars and the lips and nose, a little bit “tiding up” before they start school time. Because at those ages the kids are really, you know, very curious, they tease, they are sometimes mean…
Prof. Dr. Hakan Ağır: Yes, they are very mean, very direct and they bully, and they isolate anyone who is different. So, it doesn’t mean a lip problem or a small repair, it can be a facial anomaly, anything different. Ears, eyes and hands, anything like that, they love it. They love to isolate the one and they tease her and, on the other side, they are very fragile. When this happens, as mature people, we can face this, we can fight against this. But for the little ones, growing up with these problems at home, they know themselves from the very beginning something is “wrong”. When they look in the mirror, they recognize the difference in their face and they keep asking the mother or the father “why am I different, what happened to my lip?”. Some parents prefer to lie, to tell lies, that there was a small accident, so they had to put stiches and that’s why that happened. Which is easier and softens or suits the situation, but some people just tell the truth. They say that these kids had a problem, and someone fixed it and they will look much better after a few more operations and there’s nothing to worry about it. But, of course, the school environment is very important, the social environment is important, too. Up to age of 4 or 5 years old, the family, the close family, is a secure surrounding, a safe sea to swim in. When the kid goes to preschool, kindergarten or school, then the teachers and the classmates, they should all be informed about this situation. Because if they don’t do anything, we can “lose” some of these kids. The personality is affected, they are introverted, become furious easily, very angry, annoyed, are not good students, their marks and school performance are just getting down and they can’t become very successful, they cannot reach their full potential. So, this one point – social support is very important.
Prof. Dr. Hakan Ağır: Until they become grown-ups. For some diagnosis, like cleft lip and palate and congenital facial anomalies, you must follow the patient until their mature age, which is 18-20 years old because this is a problem of the bones, a problem of the muscles, vessels, nerves and all these growing structures in your face. When you do the first surgery, the patient is very little: a few months old, maybe. But she keeps growing and at the age of growing spurt we have some different problems like the jaw problems, teeth problems, speech and facial problems, so you need to observe these cases throughout their whole childhood and adolescence journey.