Re: Age and reconstruction

[Guest guest]

.. Conversely, if a child wants the surgery, but is afraid or has fears about it, then I don't think the parent should walk away either. Instead you continue to parent. You don't simply throw in the towel and say "OK" especially if the child is experiencing negative affects from the microtia. ie: extreme teasing, low self-esteem, etc.

Please understand that I am not advocating a parent's right to walk away from the responsibilities of dealing with their child who has microtia. But, I am advocating that the child have a voice in what happens to them.

Love, beth

ahh, it is a distinction some parents prefer NOT to draw. i guess i've seen too many towel-throwers.

my idea of a 6 year old having a voice in what happens is sort of relegated to whether he wears his red pajamas or the ones with the space suit, whether he packs the puppy dog, or the teddy bear, which finger to prick for the blood test, and any other decision, EXCEPT the one about yes or no on surgery.

it could be we're both on the same side of this line.

how do YOU view the parents who seem to be content with the child's "decision not to have surgery" at age 5 or 6??????

(no, they DON't seem to reconsider it later...it seems to be permanent, immutable, and they prefer to hold themSELVES guiltless, because "poopsie decided she didn't want to go through all that, and that's just fine with us!")

[Guest guest]

Jack writes:

but... what if the child who wants this at 6, decided at 9 THAT HE DOESN"T!!! (maybe he had a fright when he saw blood on tv or at the emergency room...-whatEVER...) i can never quite buy the arguments about the child deciding. the few times i had seen exactly that, i saw VERY regretful young adults who became downright agressive and unable to resolve conflicts over parental abandonment of what their own kids saw as their obligations, vs the kids right to remain stubborn and decide for himself...even though EVERYone now knew that a new decision should best be taken...some never resolved that conflict..it was quite devastating to see that stuff come up at conferences...it was, interestingly enough a dynamic that lasted for years, and empowered the kids by manipulation of parental guilt over their initial misjudgement! -weird!)) Jack, I see your point. However, I think your examples border on the parent's insecurities more-so than the child's. It's a fine line. I would not advocate a parent "pushing" a child into surgery if they do not want it. Conversely, if a child wants the surgery, but is afraid or has fears about it, then I don't think the parent should walk away either. Instead you continue to parent. You don't simply throw in the towel and say "OK" especially if the child is experiencing negative affects from the microtia. ie: extreme teasing, low self-esteem, etc.

Please understand that I am not advocating a parent's right to walk away from the responsibilities of dealing with their child who has microtia. But, I am advocating that the child have a voice in what happens to them.

Love, beth

>From: GrossInsCo@... >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: Re: Age and reconstruction >Date: Mon, 11 Mar 2002 17:59:50 EST > > > > > > > > > > Hello! > > I found this on Dr. Thorne's website regarding age and reconstruction: > > At What Age Is the External Ear Reconstruction Initiated? > > This is an important question, which is undergoing some evolution. Up until > > recently, surgical reconstruction of the outer ear was recommended > > beginning at the age of six years. At this age the patients were thought to > > have sufficient cartilage in the rib cage to allow reconstruction of the > > ear. As surgical techniques have improved, however, it is clear that a > > better quality, more detailed, ear reconstruction is possible when the > > surgery is delayed to after the age of ten years. > > I have never heard of this before, except in the cases (like 's) where > > there is not enough rib growth to harvest a sufficient graft. I agree with > > Jack that teasing can be a HUGE issue. Fortunately, Josh has not been > > teased a lot or certainly not to the point that he would not want to go > > somewhere (school) or shy away from others or new activities. We have > > tried to instill in him the self-confidence to handle his microtia and > > knowledge that no matter what, everyone gets teased about something. > > However, I do see a couple of drawbacks from waiting until an older age for > > the surgery that I wasn't aware of until we went through the surgery. > > 1. The grafts are taken from the buttock area. The graft will leave a > > red, square-shaped mark which fades in time. (Josh's is barely noticeable > > and he had it taken in August of 2001) If a child is older and has to > > shower or dress in front of other classmates, ie: gym, this could be a > > problem. Josh does not have to do this, but it did enter my mind as a > > complication from waiting for reconstruction. > > 2. Josh complained more about his appearance with his surgical head > > bandages than he ever has about having a little ear. He did not like them > > at all. I asked other mom's if this was an issue (thier kids were younger) > > and they said no, the kids complained about them being hot or just a pain > > to have on. This too might be a concern with waiting until the age of 10. > > 3. The rib graft is painful - the most painful part of the whole > > reconstruction. While it quickly subsides and is very manageable with > > meds, I firmly believe that kids (and adults) heal faster and with less > > pain, according to their age. The younger the better, I think. > > Lastly, if you have a child who is being teased at the age of 5 or 6 > > because of microtia, waiting additional years and possibly subjecting them > > to 4-5 years of additional teasing is ludicrous! In some cases, this may > > not be avoidable, but I would do everything as a parent to shorten the > > "teasing time" if at all possible. (Again, with Josh we waited until he > > made the decision. The teasing was not severe at all, but there did come a > > time when he decided, "I want to have this surgery done.") BUT, if your > > child wants the surgery and you are telling them, you have to wait an > > additional 5 years (without a reasonable explaination) then I think it's > > cruel. It's too long of a time to subject them to the possible teasing, > > and self-esteem problems that can occur. > > Once again, this is my lengthy opinion. > > > Love, beth > > > > > > > >ahh marybeth thank you! >VERY innaresting! >now i would see whether brent has changed his mind about this over the years >(i HONESTLY dont know: i presumed its still 6 or 7) and then,,,weigh the >opinions. >charlie thorne has been doing a lot of ears lately, i know. >brent still does more than anyone, i imagine. >i havent checked the website lately.... >thank u again. >all other things being equal, i buy into the arguments you've advanced for >doing it earlier, rather than later... >but... >what if the child who wants this at 6, decided at 9 THAT HE DOESN"T!!! (maybe >he had a fright when he saw blood on tv or at the emergency >room...-whatEVER...) i can never quite buy the arguments about the child >deciding. the few times i had seen exactly that, i saw VERY regretful young >adults who became downright agressive and unable to resolve conflicts over >parental abandonment of what their own kids saw as their obligations, vs the >kids right to remain stubborn and decide for himself...even though EVERYone >now knew that a new decision should best be taken...some never resolved that >conflict..it was quite devastating to see that stuff come up at >conferences...it was, interestingly enough a dynamic that lasted for years, >and empowered the kids by manipulation of parental guilt over their initial >misjudgement! -weird!)) >i also inagine that charlie could be empirically correct , if, in his own >practice, when ALL OTHER THINGS BEING EQUAL, he gets a 10 year old, with >better results and definition, than a six year old.. >i'll tell you... >i lean toward your arguments based on psychology, rather than perfection of >the plastic result. i agree that waiting in those circumstances could be a >mistake...in the consideration of the total child. >i'd rather have a kid who was secure and well adjusted over his results at 6 >(even if it's only a 9 out of 10) than a victim of taunting, bullying and >low self esteem from 6-10... i couldn't DO that to a kid... >jack Join the world’s largest e-mail service with MSN Hotmail. 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[Guest guest]

Jack writes:

how do YOU view the parents who seem to be content with the child's "decision not to have surgery" at age 5 or 6?????? (no, they DON't seem to reconsider it later...it seems to be permanent, immutable, and they prefer to hold themSELVES guiltless, because "poopsie decided she didn't want to go through all that, and that's just fine with us!")

I will not argue the fact that children lack the ability to make most decisions, regarding what is in their best interest, due to a lack of maturity/experience, etc.. However, they have a voice and feelings, and what they think - especially about themselves - matters! I do think that we are on the same side of the fence on this, except that I feel children should be given a "say" in what happens to them - period - young or old.

Regarding parents who throw in the towel and leave the option of reconstruction down the road "permanent" or "immutable." I do not agree with this - not at all! A child (as well as an adult) should be able to consider reconstruction at anytime. Unfortunately, there will be parents who do this, and no I do not agree with this.

At the same time, we would not have made have his ear reconstructed if he did not want it. He was well adjusted and dealt with his microtia positively, he was not being emotionally abused at the hands of his peers or himself, and he had an incredible self-esteem. There is no way we would have forced him to have the surgery if he did not want it. I know in my heart that it would have been far worse to hear him ask us, "Why did you do this to me when I told you I didn't want it done?" Now, we would have still continued to review procedures and advances in reconstructive techniques and regularly discuss them with him in case he wanted it down the road. But, if a child is well adjusted living with their microtia, and they do not want reconstruction - for a legitimate reason - then I say fine..

I do understand your point of view and yes I can see where this scenario can also take a turn for the worse in the hands of selfish, (for the lack of a better term), parents.

I do love ya Jack! beth

>From: GrossInsCo@... >Reply-To: AtresiaMicrotia >To: AtresiaMicrotia >Subject: Re: Age and reconstruction >Date: Tue, 12 Mar 2002 17:37:42 EST > > > > > > . Conversely, if a child wants the surgery, but is afraid or has fears > > about it, then I don't think the parent should walk away either. Instead > > you continue to parent. You don't simply throw in the towel and say "OK" > > especially if the child is experiencing negative affects from the microtia. > > ie: extreme teasing, low self-esteem, etc. > > Please understand that I am not advocating a parent's right to walk away > > from the responsibilities of dealing with their child who has microtia. > > But, I am advocating that the child have a voice in what happens to them. > > Love, beth > > > > > >ahh, it is a distinction some parents prefer NOT to draw. >i guess i've seen too many towel-throwers. >my idea of a 6 year old having a voice in what happens is sort of relegated >to whether he wears his red pajamas or the ones with the space suit, whether >he packs the puppy dog, or the teddy bear, which finger to prick for the >blood test, and any other decision, EXCEPT the one about yes or no on surgery. >it could be we're both on the same side of this line. >

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