RE: to let the child make the choice...or not

November 24, 2001

I kept noticing the comments of parents wanting to let their children decide things. As a parent and a child who decided I'd like to give my input.

I'm beginning to think maybe it was the doctors around here, but I have pretty severe microtia. When my parents started with surgeries for me around age 6, in my case, it was to be a 6+ phase process. Around the age of 10ish, I was a bit tired of spending my summer vacations in the hospitals. I don't think we had such a thing as outpatient surgery then. So my parents let me make the decision to stop. I had 5 surgeries under my belt. What do I have? Maybe if you glanced at me from 10' it would look like an ear. No hearing, I can't wear earrings, and when I wear glasses, they sit crooked.

Do I regret my decision? Oh yeah, every day of my life. Now, I don't even have petty summers , or petty Saturdays for that matter. There's insurance to consider, and a wealth of other issues. I suppose I enjoyed my free summers, but I think the fact that I'm hoarding web sites and message boards about my deformity is proof enough that I regret it.

I know that child choice issues on the boards aren't all this dramatic, but I feel that children to not have the capacity to make a decision like that for themselves. If something will be permanently changed, children simply can't understand the weight of that.

I've rambled enough,

jamie..thank you for the observation. you obviously got to the heart of my question on steve's methods, as opposed to some of the respondents (one with 9 postings!) who somehow failed to see that the discussion with steve in no way dealt with the straw man she sets up over canalplasty and parent guilt vs baha and no parent guilt, or vice-versa, or whatever...

it was never about that at all, of course.

i will only nod to the obvious: some kids can benefit from canalplasty, some cannot.

the ones that cannot choose other means to aid hearing. who faults this?????

the discussion with steve is whether kids should be free to make choices as respects microtia repair. steve has a precocious 6 year old. and so did someone else... bethany is an example of a gifted kid who has gone far.

but this is...anecdotal. YOUR kid is brilliant and perceptive and intuitive and gifted and would never grow up faulting you.

so is mine.

but i fortunately get to see about 50 kids a year with microtia (this year there were 60 registered for our meeting before 19 arabs on 4 planes put the fear of flying into just about everyone, including dr brent & dr j.)

in the past few months, i have tried to turn many of those who have newly contacted me into yahoo groupies.

i dont know how many ive been successful with because i dont keep statistics. steve says we are up to 66 members and thats a success statement in and of itself.

but i will estimate that i have seen hundreds of kids in the 15 years since ive undertaken my meetings. i receive 1 or 2 calls a week from new parents. i take the time to speak with them because often, as new parents, they are confused and angry and upset. what they want to know, what makes them most happy (at least at their initial contact with me) is to know...this is reparable. this is no big deal. your kid will look like a movie star. your kid will (god willing) have normal hearing or close to it...they want to hear this because for the next 6 years at least its better to hope and understand that so much of what they see on day one IS temporary, IS reparable. so i get to see a lot of kids... and hear a lot of stories from parents (mostly) of all ages of kids. and my stories are not anecdotal and reflective only of the one kid connie cares for so lovingly or the one kid steve parents so exceptionally or the one kid bethany evolves into so magnificently. it is the heartfelt cry of the anguished tortured mother whose kid has been devastated in the playground, the shreiks and wails of kids whose ears have fallen off (in front of 50 other kids!) , the real tears of the fathers who can solve so much, who would sacrifice so much if they could only get their kids innocence and self-esteem back to where it was one day before that sadistic bully sat down with them at lunch or talked the other kids into believing their kid was freaky.

those parents, and the ones who waited too long , far too long, who were now dealing with psychological issues of self-esteem (a nine year old who wouldn't talk) self-hatred( a 13 year old) certain teen agers who never looked up, certain adults who confided to me just how angry they were, had been, but mostly, mostly teens and adolescents who all simply and classically had parents who did...nothing. the parents were now seeking remedy and justification, ( i am STILL not talking about canalplasty vs baha) and thats how they began the search which led them towards microtia repair.

i cannot make long distance evaluations on the stages of steves kid as stage 4 as opposed to bethanys stage 1 or vice versa...if the problem is not noticeable, then its not noticeable.

if you're too brilliant at 6 to be guided by your parents, fare thee well. but for the rest of the world...

there is a lot of pain and heartache and recrimination and unnecessary mental anguish over letting 6 year olds with big mouths take over parenting responsibilities from what one would have hoped were sophisticated adults with mature sensibilities.

if steve says surgery is not warranted , i have to believe him.

if he were to tell me his 6 year old decided the issue , i'd tell him to have his head examined.

see the difference?

jack

November 25, 2001

wrote:

>So my parents let me make the decision to stop. I had 5 surgeries under my

belt.

There has to be a happy medium here... parents need to accept responsibility

for making the final decisions for their child(ren) and while it is

important to ask for and hear a child's input and feelings in a given

situation, parents need to remember that a 10-year-old is definitely NOT

prepared to understand all of the implications for the future... It is

unfortunate that your parents let you make that choice to stop the surgeries

and that you are now keenly regretting it.

>What do I have? Maybe if you glanced at me from 10' it would look like an

ear. No >hearing, I can't wear earrings, and when I wear glasses, they sit

crooked.

Do you have enough " lobe " to hang pierced earrings on? I've got severe

bilateral microtia and in college I had my ears pierced. I usually wear

hoops so that they hang down under my hair without showing my ears at all.

It's amazing what a difference they can make in adding a semblance of

" normalcy " to my appearance! Don't give up on earrings... I don't wear

large earrings, nor can I wear the pretty little studs or teeny hoops, but I

am happy that I can wear any earrings at all. They didn't interfere with my

bone conduction aid when I wore that, nor with my BAHAs.

>Do I regret my decision? Oh yeah, every day of my life. Now, I don't even

have petty >summers , or petty Saturdays for that matter. There's insurance

to consider, and a >wealth of other issues. I suppose I enjoyed my free

summers, but I think the fact that >I'm hoarding web sites and message

boards about my deformity is proof enough that I >regret it.

Ouch, I can imagine how much you do regret this... Have you considered

having a consultation with Dr Brent or Dr or Dr Romo to see if

possibly reconstruction would still be possible? Or if not, if it is

deemed that there is too much scar tissue and damage, perhaps you could

consider prosthetic ears?

>I know that child choice issues on the boards aren't all this dramatic, but

I feel that >children to not have the capacity to make a decision like that

for themselves. If >something will be permanently changed, children simply

can't understand the weight of >that.

I am not a parent, but I agree that children do not have the emotional or

intellectual capacity to make this sort of decision for themselves,

regardless of how mature and intelligent they may be at whatever age. They

don't have the ability to see into the future and understand the

implications of doing or not doing a particular procedure and how it will

have an impact on their lives. Most decisions are best kept in the hands of

the parents, especially those which will affect a child's physical

functioning or appearance.

This is not to say, though, that a child should be stifled from expressing

his or her own concerns and opinions. It's important for a child to learn

from earliest years that he or she has the right to speak up and provide

input about various situations, including surgeries and medical procedures.

After all, it IS the child's body... and a child needs to feel some autonomy

and control about his or her own body and what happens to it. In some

instances it might be appropriate to postpone a particular procedure if it

is something which can wait until a child is older and if it is something

about which he or she could then make a decision. However, in most

situations involving reconstructive surgeries the ultimate decision should

be in the hands of the parents, as it is their responsibility as adults and

parents to do what they feel is best for their child(ren).

--Connie

November 25, 2001

Jack wrote:

>what makes them most happy (at least at their initial contact with me) is

to know...this >is reparable. this is no big deal. your kid will look like a

movie star. your kid will (god >willing) have normal hearing or close to

it...they want to hear this because for the next 6 >years at least its

better to hope and understand that so much of what they see on day >one IS

temporary, IS reparable.

I think it is wonderful that you are being so helpful to so many parents and

the meetings that you've sponsored over the years have undoubtedly brought

hope and help to many...

BUT...I have to take issue with something. Yes, microtia and atresia ARE

repairable...to a degree.

>your kid will look like a movie star. your kid will (god >willing) have

normal hearing or >close to it...

Don't you think that when talking to new parents that this is a little

misleading to hold out promises which certainly may not come to fruition?

For one thing, even the best surgical reconstruction of the external ear is

still not going to replicate the human ear to the extent that it will look

totally " normal. " A child may look better, yes, but I would hope that the

purpose of the surgery is to improve a child's life rather than striving to

" look like a movie star. " (Actually, I don't know of any movie stars who

have reconstructed external ears!) Much depends upon what tissue the

surgeon has to work with; a less severely microtic ear will probably have a

better outcome than the severe " peanut-shaped " one. In any case, the

external reconstruction will undoubtedly be satisfactory and parents and

child will appreciate it much more than the microtia, but it is still not

going to look completely " normal. " While I'm sure that there are many who

are thrilled with the outcome of the surgery, I also wonder how many parents

and children have undergone external reconstructions only to be somewhat

disappointed with the final results?

Not all canalplasties or middle ear surgeries have the outcome of the

patient being able to achieve normal hearing. Many patients still need to

wear hearing aids. In some cases, the aid may now be able to be a BTE with

ear mold as opposed to a BTE modified for bone conduction complete with

headband, cord and oscillator, but still...it's a hearing aid (or two). So

holding out the promise that someone's child will be able to hear normally

after a canalplasty is probably not such a good idea...

And of course, too, much depends upon the surgeon who does the work, whether

it be reconstruction of the external ear or reconstruction of the middle

ear/canalplasty... The US is very fortunate to have some very, very skilled

surgeons in these fields. However, Dr J is getting up there in years and to

date there hasn't been any young, bright shining star of a protoge following

in his footsteps ready to take over the day that Dr J sets down the scalpel

for the last time...

>it is the heartfelt cry of the anguished tortured mother whose kid has been

devastated in >the playground, the shreiks and wails of kids whose ears have

fallen off (in front of 50 >other kids!) , the real tears of the fathers who

can solve so much, who would sacrifice >so much if they could only get their

kids innocence and self-esteem back to where it >was one day before that

sadistic bully sat down with them at lunch or talked the other >kids into

believing their kid was freaky.

>those parents, and the ones who waited too long , far too long, who were

now dealing >with psychological issues of self-esteem (a nine year old who

wouldn't talk) self->hatred>( a 13 year old) certain teen agers who never

looked up, certain adults who >confided to me just how angry they were, had

been, but mostly, mostly teens and >adolescents who all simply and

classically had parents who did...nothing. the parents >were now seeking

remedy and justification, ( i am STILL not talking about canalplasty >vs

baha) and thats how they began the search which led them towards microtia

repair.

I suspect that in some of these instances parenting coping strategies were

somewhat weak so that the child with the microtic ear(s) was not able to

adequately develop his or her own ability to handle the inevitable teasing

or embarrassing incidents. This is where earliest efforts at building a

child's self-esteem come into play.

As Bethany pointed out, all kids get teased, it's not something unique to

people with microtia. Kids pick up on anything different about another kid

and for whatever reason start teasing or bullying. Yes, this hurts, and yes

it requires a certain strength of spirit and a lot of self-esteem to not let

this defeat a person... Children with microtia get teased, but so do

children who have buck teeth,or who have red hair, or who have craniofacial

or orthopedic disabilities...

I wonder how many times kids with microtic ears which have been surgically

reconstructed, ears which STILL don't look like the other kids', are ALSO

teased?

As for prosthetic ears falling off... I think that with current techniques

this isn't quite as much of an issue as it was in years past. In the days

when people used glue to affix them, it was definitely a risk. Now, with

today's titanium implant and magnetic fixtures, prosthetic ears do stay on

better. However, yes, they do accidentally come off from time to time... a

friend mentioned how she was having her hair washed at the beauty salon and

one of her ears fell off. The person washing her hair was horrified, but my

friend explained the situation, snapped the ear back into place, and they

went on...

>if steve says surgery is not warranted , i have to believe him.

>if he were to tell me his 6 year old decided the issue , i'd tell him to

have his head >examined.

>see the difference?

Yes.

--Connie

November 25, 2001

In a message dated 11/24/01 3:45:23 PM US Mountain Standard Time,

@... writes:

<< I know that child choice issues on the boards aren't all this dramatic,

but I feel that children to not have the capacity to make a decision like

that for themselves. If something will be permanently changed, children

simply can't understand the weight of that. >>

Thanks for the input!!!! I was starting to feel guilty for putting my

son through 12 surgeries...........but its all over at age 8 for him.

Yours in Him,

Mickey

November 25, 2001

>what makes them most happy (at least at their initial contact with me) is

to know...this >is reparable. this is no big deal. your kid will look like a

movie star. your kid will (god >willing) have normal hearing or close to

it...they want to hear this because for the next 6 >years at least its

better to hope and understand that so much of what they see on day >one IS

temporary, IS reparable.

(sigh)

connie...

please read before you come out swinging. i wouldnt want to accuse you of not listening, when i'm sure you're trying.

your diatribe below just totally ignores the distinction i have JUST drawn between external microtia repair and internal atresia repair.

SO MUCH OF WHAT THEY SEE ON DAY ONE IS REPARABLE.

the fact is that microtia repair is an outstanding success, and has been (in the hands of the appropriate surgeons) the case for the last 20 years. most people, (perhaps yourself) never meet 5 or 50 or 500 microtia patients, so most people (many of them are your 2-bit surgeons) dont have a clue as to how good the results are. a new mother and father want DESPERATELY to hear this on day one.

the god-willing part speaks for itself. but it conveys an awful lot of hope. many many kids are helped by canalplasty. no one in america is happier than i am with this baha development! i too would want it 100% TOTALLY reparable IN EVERY CASE. i'll settle for telling a new parent: "so much is reparable..." did you hear that?

your diatribe and general survey of ear repair and hearing surgery in america that follows leads me to believe...you might have missed it, and with that, my point.