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

This one is about: Telling a 5-Year Old Why He is Having Surgery


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From the email discussion on Cleft-Talk, one parent writes:

Joanne I know you have been through this a number of times and just wondered how you prepare your children for surgery. My nephew has a very good self concept and doesn't seem to be aware of any differences in the way he looks. He has had some repairs done already. He is in preschool and to our knowledge no one has pointed out that his nose looks flat. Any helpful suggestions would be appreciated.

Joanne Green responds:

Clearly, a toughie! I remember the first time for me - Joey was just turning 5. No way did I want to go through with it, and I agonized over a surgery that I felt was "purely cosmetic" (we parents should not be allowed to think when we are being emotional.) This was not purely cosmetic, but rather part of his staged repair - and in retrospect, he needed it. First thing to do, is deal with it in yourself! Your anxieties will be communicated to the child, and that is not good. When you discuss it, you need to be comfortable with the subject.

His reaction to the discussion a year ago is not surprising, and in no way indicates that he is not aware of the difference. If he is around other kids, he is aware. He very likely senses that there is nothing anyone can do about it, and so sees no reason to talk about it. I was shocked when I learned that my 4-yr-old Joey not only realized the difference, but was also internalizing some very sophisticated feelings about it.

When his lip revision came up (adhesion to z-plasty), 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 - and he always knew he was having surgeries and would have more. So no surprises. But 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 do was going to give him a smoother lip.

His eyes brightened. His hand went to his 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 the doctor had to make big cuts while he was asleep - that he would not feel the big cuts, 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 did not have the option of having 
the surgery or not - but I wanted to know his feelings about the surgery - and I wanted him to feel that he was aware of all that was happening.)

My feeling is your nephew would like a more "normal" nose, but does not think it a possibility at this point. Point out your nose, and his mother's nose, and other people's noses. Then tell him that the operation will give him a nose that looks more like yours (and theirs). My feeling is, he will be excited by the prospect.

Do NOT tell him that he will have a "perfect" nose, or that his nose will look "just like mine". That would not be accurate. It will look MORE like everyone else's. When you talk about the pain - let him know you will be there, and that he will have medicine that will make it not hurt as much, and that it will not always hurt. Pain is a difficult part of the surgery, but realize that even AFTER the surgery he remembered, Joey ASKED for - in fact, begged for - a rhinoplasty a few years after that.

Hope this helps. There are some good books out there too (check our cleft links) but nothing is going to beat the one-on-one.

Joanne

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And another related post from Cleft-Talk: (Feb 98)

Pat writes:

Michelle, you were wondering about preparing your son (4 yo) for surgery (lip revision). I've done this recently enough to remember with my daughter (same age as Jon).  She did pretty well -- she seems pretty comfortable with the docs.

A couple of things:  First, let Jon have as much control as possible. There may not be too many things that he can choose, but whenever he can make a choice, let him. Which toy to take, which parent goes with him to induction (the sleeping medicine place).

Second, ask the hospital orientation nurse about role playing with him. We did a very short thing about taking the mask -- we put our hands over our nose and mouth and took a big deep breath, and then my little girl did it. So she would understand what that was all about and how to do it.

Third, We also ask for a pre-med called Midazolam (also known as Versed). Ask your doc about it. It relaxes the person and evidently also helps erase the memory of the experience -- I think someone else also mentioned this 
pre-op med.

Fourth, we tried to make sure our little girl understood what she would experience post-op -- for example, the IV.  Your little guy will probably have one so a good idea to chat about that and what it is doing -- putting soldiers in his arm to help him fight infection ... putting food in his body because his lips will be sore for a little while. Also, be sure he understands that his lips will look different but it's okay -- that it will hurt, but the hurt will go away soon and there will be special medicine to help take the hurt away. Practice with any scraped knees or cut fingers before hand. "Remember, Jon, how you hurt your knee and mommy put a band aid on it? And pretty soon it didn't hurt anymore? Well, that is what your lip will feel like when the doc does your operation." Or something along that line.

Finally, assure him that you or his daddy will be there all the time -- if that is possible with having other kiddos to look after. If that is not possible, try to make sure he talks to each of his nurses and knows them by name. I am always careful to find out the first name of anyone who deals with my little girl and then be sure to introduce them (properly and formally) and explain how they are there to help her -- this is Joan and you can ask her anything you want, she'll be looking after you ...

Well, I'm sure I've left something out but wanted to respond to this. We will be going into two surgeries this summer (June and July) and this time will be quite different again because my little girl will remember her surgery from last year more clearly. Still she did pretty well with it, so I hope I can use my own advice -- lol.

Best to you and Jon on his surgery date and in your preps.

Pat in Calgary


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