You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: To Tube or Not To Tube - That is the question
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Below follows a brief discussion on the automatic use of ear tubes:
>I never argued as to whether my son needed something or not, I just
>wanted to be told why HE needed it. For example after a 'team evaluation'
>they recommended he have tubes in his ears, I asked why and got the
>response that about 80% of cleft-babies needed tubes in their ears
>because........(explanation of why tubes are necessary).
>I then said I understood all of that, but what specific reason is it that
>you are recommending my son to have them. They again replied with their
>statistic. Let me tell you now that the team ENT missed us because another
>Dr. was in our room when he came by and then he wasn't able to get back.
>Anyway I could go on but the deal was, they wouldn't answer my question
>especially so we ended up leaving the team and finding our Drs. on our own.
Now, see, I did the exact opposite. I was told that Jacob would need tubes - and the same reasons given, so I weighed the probability of having to undergo another anesthesia vs. the potential damage done by tubes, and he
got the tubes, even though he never had an ear infection. (the statistic sited was enough for me because I KNEW Jacob had a cleft. - and that related it to him).
For Joey it was a different matter. He already had infections and the tubes stopped them. But Jacob continued to be ear-infection free, and I can't help but feel that I made the right choice for him. Jessica, on the other hand, had a ton of infections, got the tubes, continued to have a ton of infections.
Jacob also had a very large, almost black nevus on the calf of his leg. I was told it should come off. I asked why. The answer - it could develop into a type of very fast-growing cancer that could cost my son his leg - or his life. The percent chance I was given was 10%. A very small percentage, when you realize that there was conversely a 90% chance that it would always remain benign. But it came off. Why? Because I would rather take it off and be wrong than leave it on and be wrong.
The problem with YOUR doctors was not that they were giving you bad advice, or that they were not giving you a good answer. They were not giving you an answer to the question you were asking them. They were not hearing your question, and so they were giving you an answer to a question you did not ask about. You wanted to know why YOUR SON was going to have tubes (presumably because he had not had infections yet), and in truth, for a
child who has not had infections yet, there is no reason for tubes except that there is a high probability that he WILL need them, given that a cleft compromises the integrity of the Eustachian tubes. And yes, we will all hear
of the family whose cleft-affected child had no tubes and no infections and whose NDA (not diagnosed with anything) child had one infection after another and a half a dozen sets of tubes.
But the reality is, that is not the norm. Jacob did not have to develop cancer in order for me to take steps to prevent it, given that the probability (or possibility) was there in the nevus. Nor did he have to have ear infections for me to allow them to take steps to prevent them either, given that the probability was there in the cleft palate and
therefore compromised Eustachian tubes.
>I have looked for Dr's who tell me why my son needs certain treatment and
>not do them just because he had a cleft palate.
Yes, that is always the danger. For instance, I deal with people who believe my kids should seek therapy because they are adopted. (! ? !) Why? They don't show any signs of maladjustment. The reason - just because they
are adopted. Well, that's not reason enough for me. Now, if it is because they have issues they are having a hard time with, or because they can't make friends, or if they seem to harbor anger, well, then therapy may be
But again, we look at what is called type-1 errors and type-2 errors. Type 1 is what if you do something when you shouldn't. Type 2 is what if you do not do something when you should. To decide which kind of error you can live with, you determine what is the result of that decision. If I have tubes put in when he will not need them after all, what happened? His lip surgery is 15 minutes longer, the tubes eventually fall out, the myringotomy incision grows closed, that's it. What if I choose to not have them put in when, in fact it turns out he needs them? What will happen? He will have great, recurring or chronic pain. His hearing will be compromised temporarily. His hearing may be permanently compromised. He could end up with much more serious infections, such as encephalitis. Hmmmm... then we make our decision.
>BTW the term "cleft baby" which the team used irritated me as well. I had
>a baby who was born with a cleft palate.
Yes, I totally agree. What is worse yet is when my child is referred to simply as a "cleft" "Oh, you're the mother of the cleft." "So what are you, then, Doctor? A Fat and Bald!"
>I have wanted to get this off my chest for a long time. Thanks for listening.
All of my comments are food for thought - offered up for the purpose of discussion. We are two different mothers who made two different choices. However, the big point we both agree on, hands down, is that if a doctor is
going to treat MY child, he is going to answer MY questions!
Joanne Green - Wide Smiles
She then replied:
>Let me see if I can be more clear about this. An ENT never saw my son. The
>only reason they gave me for putting tubes in his ears was because of the
>percentages in clefts. I didn't argue the fact he should have them I just
>wanted to know why HE needed them. Of course they could not answer me
>because the doctor never saw him. That was the part that I couldn't get
>past. Percentages are great for guidelines, but I have a problem when they
>start using them as the rule. I assume your son's leg was physically looked
>at by some doctor. Anyway we went and saw an ENT after this and he
>recommended the tubes as well and cited me the statistics but then went on
>the explain why this particular child needed them. He described the fluid
>he saw, the distortion of the Eustachian tubes, etc. I guess it's all
>just perception, this had been the last straw, I felt we were always treated
>with the "do what we say and don't ask questions" attitude. This was just
>one instance in a long line. They also told me I couldn't go to their
>medical library because "The books were full of big words I wouldn't
>understand." And that's a quote. We are very comfortable with our doctors
>now and Dan is doing really well.
>I guess the whole point is, you just have to do what you think is best.
> Making decisions for other peoples lives is extremely difficult. And if
>you don't feel right about the decisions you made, you may always wonder.