You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: What to Tell Your Older Child About Surgery


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THIS TIME HE'LL KNOW!!!!
What to Tell Your Older Child about Surgery
by Joanne Green

Those first surgeries were tough. Handing a tiny baby over to a stranger, knowing that he would come back to you hurting and crying and angry and confused. It was a nightmare for you. But you got through it. And one of the ways you got through it was that you told yourself that he would not remember the pain, or the fear, or the whole ordeal.

But now it's altogether different. He's not a baby any more. He has a real personality, with real emotions. He feels fear. He remembers pain. HE UNDERSTANDS!!! Or does he? Can he? Can you???

How do you tell the child you love so intensely that he is going to have surgery? How do you comfort him when you need comfort yourself? How do you help him to understand?

He has a good sense of himself already. He doesn't perceive himself as being any different from anyone else. But the doctor wants to change his nose, or revise his lip. And yes, the surgery probably SHOULD be done. His nose really IS flat. Someday, if not today, he WILL be aware of a difference.

I have had experience with this issue a number of times. And it's always a toughie! I remember the first time for me. Joey was just turning five. It was time for his lip adhesion to be replaced with a Z-plasty. I guess it had to be done, but no way did I want to do it.

I agonized over this surgery. I considered it to be "purely cosmetic" (we parents should not be allowed to think when we are being emotional. This was not purely cosmetic, but rather, part of a staged repair. In retrospect, he needed it.)

The fact that a child does not act aware of a difference does not mean he is not aware that a difference is there. If he is around other kids, he is probably aware. He very likely senses that there is nothing anyone can do about it, and sees no reason to talk about it. I was shocked when I learned that my four-year-old Joey not only realized the difference, but was also internalizing some very sophisticated feelings about it.

When his lip revision came up, Joey helped me out some. There was no time that he had to be "told" that the surgery was going to happen - he knew when I knew. He also knew that he had had surgeries, and that he would have more. So, no surprises.

In my effort to make sure he understood, I sat with him and asked him how he felt about the fact that he had a "bumpy lip" and I had a "smooth lip". No major response. I told him that the operation they wanted to give him was going to give him a smoother lip. His eyes brightened. His hand went to his little face. A look of incredulity came over him and he said, "You mean.....They're gonna......?" And I said, "Yes, they're gonna." I never realized before that how much he wanted his lip to look more like everyone else's.

I told him that it would still not look like he never had a cleft, and that it would still have some scars and maybe some bumps on it. But it would be better. I told him that the surgery would hurt because while he was asleep, the doctor would be making big cuts in order to take the bumps out of his lip. I told him he would not feel the doctor make the big cuts, because he would be sleeping a special sleep, but when he woke up, he would have a very sore lip and mouth. And I told him we would have to be very careful to let the sore mouth heal up.

He considered it all very thoughtfully. And then he said, "Ok. I think that it is a good idea." (Mind you, he didn't actually have the option of having the surgery or not. I wanted to know his feelings about the surgery, and I wanted him to be aware of all that was happening.)

When our little ones face surgery, I feel that first, they need to have some idea as to why they are going to do this. What is the outcome expected to be? For Joey his was a smoother lip. For others, it may be a pointier nose, clearer speech, or perhaps a place for their grown up teeth to hang on. But they need to know that there is a good reason for the surgery.

Then they should have a realistic expectation of the outcome. It will not be perfect. There will be scars. Or there may be be more surgery later. But the end result will be an improvement - or why would we do it at all?

They need to have a realistic understanding of the experience. Yes, it will hurt for a while. But mommy and daddy will be there, and there will be special medicine that will make it not hurt so bad. They will be very careful for a while so that the operation can heal as best it can. But sooner or later, they really will be able to get back to normal stuff.

They need to feel a part of the process. They need to be aware of plans being made, and whenever and wherever possible they need to be an active member of the decision making team. Let him choose what toys to take to the hospital, which parent will spend the night, what videos will be waiting for him when he gets back home, what foods will make up his liquid diet. He needs to know that he is a part of the team.

And he needs to realize that nothing is being done TO him, so much as it is being done FOR him. Help your child to realize that every plan that is made is made with his bests interests at heart. And every step is taken with respect for him as a person behind it.

Joey handled that surgery well. He chose to take an active role in his own aftercare. He was pleased with the results. And two years later, he actually requested the next surgery, knowing full well what surgery is all about.


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