Re: Ears

[Guest guest]

:

My daughter Ally's ears were " fixed " when she had her cleft lip repaired at 2

mths. They look pretty normal now. I never really gave it much thought. We

were still in shock and took her to see the plastic surgeon when she was 2 days

old. He said he would fix her lip when she reached 2 mths or 10 pounds and

would we also like him to fix her ears. I said yes without ever really giving

it any thought. They look great.

Robin mom to Ally 23 mths

[Guest guest]

,

We have thought about it for our daughter, but mostly for the "keeping the aids in" side of things. She is only 2 so teasing at school, etc isn't an issue - yet. We decided not to do it after we came up with a solution to keeping her aids in. I don't know what we will do in the future. If she wants it done (I don't think they're all that bad myself!), then I will certainly let her. I think if she was getting teased a lot (depending on her level of understanding at the time, etc) I would try to explain to her that her ears are different and how children can be mean and tease her about them, but they are beautiful to me, the ears she was born with and I've loved them from the first minute I laid eyes on them. But, I would tell her that it is possible to have surgery to change them and make them look more like mom or dad's, and if she wanted to do it, we could, but if she didn't, than that was A-okay with me.

I guess that's how I would handle it, again, depending on how much she would understand, etc.

Good luck with your decision,

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Ears

The reason that I have come out of "lurkdom" is to ask a question from the"experts" :-) has quite deformed outer ears - one ear is a typical cupped "charge"ear. The other resembles more like Dr Spocks ear in Star Trek. Neither havemuch cartiledge and keeping hearing aids on is a nightmare but we haveworked out a technique thats doing ok.I asked a couple of plastic surgeons about cosmetic surgery a few years agoand the first turned us down because of his diagnosis (T-18 is consideredincompatible with life) and the second said that there was not much theycould do about the shape and the best they could do was pin them back alittle. So I resigned myself to the fact that little could be done.He has been fairly sheltered all his life because of severe health problemsbut no sooner did he start with the mainstream placement than the teasingstarted. It hasn't been too bad because he has a full time teachers aid -but one day she wont be with him and I am concerned that the teasing willget worse.Recently though a group in the US have offered to fly us over and have thecosmetic surgery on his ears free of charge. Its major elective surgery andwill probably take a couple of operations over a few years. Up until theoffer was made I was sure that I wanted it for him, but now that the offerhas been made I am not so sure.At the moment his self esteem is great and he mixes well with his peers. Buthe doesn't have a lot of "special friends" at this stage. He is alsoblissfully unaware that he is different. It was only recently that herealised not everyone has a g-tube and actually asked me if he was born withhis :-)) So if I go ahead I will be doing it to prevent future problems notproblems that exist at the moment.So my question is - have any of you thought of cosmetic ear surgery and whatthose thoughts are? Is there anyone that has gone ahead with it? If so wouldyou mind sharing why and if it was a success.Take Care and Keep Looking for Rainbows!!!, mum to (5, T-18 mosaic)ICQ: 4723851AOL: Rainbowkazhttp://homepages.tig.com.au/~karenshttp://www.trisomyonline.orghttp://www.challengenet.com/~soft/index.htmFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

hi , My daughter had her ears done I believe it was before 4th

grade(summer) She wasn't as aware of them as I was but she was painfully

aware that she could not have pierced ears. She had the exact type ears you

describe with her doctor Spock ear really unable to hold an aid. Her plastic

surgeon used all skin in front of the ear that was possible to use and took

part of her cup shaped ear and used a portion to give her a fold and roundish

shape with lobe for her Dr. Spock ear. He felt he could use this approach

rather than the more invasive rib cartilage operation. He was by the way one

of the few specialists in the countyr who specialized in ears and wrote many

papers on the subject. BTW, he has since retired, but the other Dr. who

specializes in this is on the west coast in California. The surgery made a

HUGE difference in her appearance but obviously it is not a miracle cure. Her

face appears more symetrical and in my opinion she isn't as stared at at

before esp. since she too is in a mainstream environlment and again just an

opinion but I believe it was very important for her self esteem even if she

didn't realize it att the time. I never made an issue of her ears. She wears

in the ear aids now since the Dr. didn't want the weight or pressure of the

BTE type. by the way she screamed more with the ear piercing than the surgery

itself! Marisa

[Guest guest]

,

The plastics guy and ENT brought it up when Aari was a baby but

said that it would be best to wait to have it done when he was older

for the best results. At the time we had more life threatening

things to worry about so kinda forgot about it.

Last summer at the crainofacial clinic a plastics resident brought it

up again, saying we had to get it done NOW.... I asked why and

he said Aari would fit in better at school.. he asked Aari if he

wouldn't like to look like the other kids and not be teased.. Aari

told him no one teased him and his ear didn't bother him and asked

why it was bothering the doc LOL threw the doc for a loop that

did.. So we'll wait til Aari wants it done.. if he ever does..

About the only thing that seems to bother him is his size, he's

starting the third grade and is realizing that most of the

kindergardners are taller than him...

Casey

Mom to Dawn 21 HH, Ken 10 ADHD, 8 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

Michele:

The surgeons name is Louis Argenta. I know he has fixed the cleft lip and

palates of several of the kids on the list. He is at Wake Forest University

Baptist Hospital (Brenners Childrens Hospital) in Winston-Salem North Carolina.

His number is . He was featured on Dateline several years ago for

some reconstructive surgery he did on a Guatamalian (sp?) girl who had been

burned very badly on her face. My mom saw the show and told me about him when

an ultrasound showed Ally's cleft lip.

Robin mom to Ally 23 mths

[Guest guest]

Robin-

Ally's ears sound exactly like Aubrie's! I'd love to have the name and contact

info of her surgeon to see what he would think of her situation.

Thanks!

Michele W

mom to Aubrie (CHaRgE) 2.5 yrs and 8 yrs, wife to DJ, in IL

west@...

RobinAlanT@... wrote:

> Jan

>

> I think my daughters ears are not typical CHARGE ears. They were pretty much

normal looking except that the very tops flopped over. The dr called it lop

ear. The ear was normally shaped (plenty of ear lobe) except for the floppy

tops. I am not sure what he did - but they DID NOT take any cartilage from her

rib or anything like that. I think it was a minor procedure compared to what I

have heard discussed here on the list. Dr. Argenta - one of the top Plastic

Surgeons in the country- did it.

>

> Robin mom to Ally 23 mths

>

> ------------------------------------------------------------------------

> Wish you had something rad to add to your email?

> We do at www.supersig.com.

> http://click./1/6807/2/_/22564/_/963416379/

> ------------------------------------------------------------------------

>

> For information about the CHARGE Syndrome

> Foundation or to become a member please

> contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

[Guest guest]

Robin-

Thanks for the info!

Michele W

mom to Aubrie (CHaRgE) 2.5 yrs and 8 yrs, wife to DJ, in IL

west@...

[Guest guest]

Hi ,

On the day that my son was born I was told that he would

need plastic surgery on his ears but they would not be able to do it until

the cartilage had " hardened " .

His ears didn't match but that was O.K. we quickly got used

to them and I thought they looked cute.

The only problem we had with his ears was when he was

finally given hearing aids at age 2 and a half we couldn't get them to stay

on his ears without a generous strip of double sided tape. His ears were so

small they had to given him hearing aids designed for babies under 12 months

of age. He was given glasses at the same time and trying to arrange them

both on his ears was often a trial.

After his Choanal Atresia was repaired at age 5 the Plastic

Surgeon at the Children's Hospital in Melbourne said it was time to do his

ears. Unfortunately my then husband was posted to Canberra, so I got a

referral to a Plastic surgeon there and we fronted up and asked him to do

his ears. I was not impressed with the response I received, he said " That

as only I had a problem with his ears and not Larry, he would not fix them

and that I had to come back when they were a problem for him ! " Larry had

the mind of a 2 year old and as yet hadn't noticed how odd his ears were,

Larry had low self esteem and strange behaviours, he did not need to

develop a phobia about his ears just to please a Doctor. Needless to say I

didn't go back and as Plastic Surgeons were scarce in Canberra at that time

I didn't pursue the matter at that time.

When Larry was 7 we moved back to Adelaide and I took Larry

to see the Cranio Facial Unit at the Children's Hospital in Adelaide. It

took a while but eventually Larry was scheduled for surgery around the age

of 8. I was keen to have his ears done as they had ceased to be cute as

they had started to grow out from his head and dominated his whole face.

The Plastic Surgeon told us he would need two operations one to make his

ears the same and one to pin them back.

The first operation went well and about a week after we

went back to have the bandages removed. I was told not to expect perfection

but when the Surgeon took the bandages off I cried, he looked so beautiful

and best of all hearing aids stayed in place with out the tape, now he could

take his glasses off without upsetting his hearing aids.

The following year the second operation was done and I was

very impressed with the results, his ears do not look quite the same but

they make such a difference to his face, I felt that people looked at his

face not his ears now.

Puberty has not been kind to Larry as his face has become

very angular and his mouth gapes nearly all of the time, he is only now

noticing that people look at him because heis different. I am pleased we

had his ears done and hopefully when he gets his teeth and jaw done he will

be able to eat properly and keep his mouth closed.

I guess what I am saying is every little bit helps, I

made the decision for Larry and I do not regret it and I would do it again.

I am sending some photos of Larry in a separate email to

show you the

transition his ears went through over the years. Sorry this is so long.

Jan Hewitson, Mum to Larry 17 chaRgE

Mandurah, West Australia

[Guest guest]

Robin,

Dr Argenta fixed mt sons cleft lip in Michigan. He did an exellent job

and is a very good Dr all the way around. I would highly recommend him.

V.

[Guest guest]

Re: ears

> Hi ,

> On the day that my son was born I was told that he would

> need plastic surgery on his ears but they would not be able to do it until

> the cartilage had " hardened " .

> His ears didn't match but that was O.K. we quickly got

used

> to them and I thought they looked cute.

> The only problem we had with his ears was when he was

> finally given hearing aids at age 2 and a half we couldn't get them to

stay

> on his ears without a generous strip of double sided tape. His ears were

so

> small they had to given him hearing aids designed for babies under 12

months

> of age. He was given glasses at the same time and trying to arrange them

> both on his ears was often a trial.

> After his Choanal Atresia was repaired at age 5 the

Plastic

> Surgeon at the Children's Hospital in Melbourne said it was time to do his

> ears. Unfortunately my then husband was posted to Canberra, so I got a

> referral to a Plastic surgeon there and we fronted up and asked him to do

> his ears. I was not impressed with the response I received, he said " That

> as only I had a problem with his ears and not Larry, he would not fix them

> and that I had to come back when they were a problem for him ! " Larry had

> the mind of a 2 year old and as yet hadn't noticed how odd his ears were,

> Larry had low self esteem and strange behaviours, he did not need to

> develop a phobia about his ears just to please a Doctor. Needless to say

I

> didn't go back and as Plastic Surgeons were scarce in Canberra at that

time

> I didn't pursue the matter at that time.

> When Larry was 7 we moved back to Adelaide and I took

Larry

> to see the Cranio Facial Unit at the Children's Hospital in Adelaide. It

> took a while but eventually Larry was scheduled for surgery around the age

> of 8. I was keen to have his ears done as they had ceased to be cute as

> they had started to grow out from his head and dominated his whole face.

> The Plastic Surgeon told us he would need two operations one to make his

> ears the same and one to pin them back.

> The first operation went well and about a week after we

> went back to have the bandages removed. I was told not to expect

perfection

> but when the Surgeon took the bandages off I cried, he looked so beautiful

> and best of all hearing aids stayed in place with out the tape, now he

could

> take his glasses off without upsetting his hearing aids.

> The following year the second operation was done and I

was

> very impressed with the results, his ears do not look quite the same but

> they make such a difference to his face, I felt that people looked at his

> face not his ears now.

> Puberty has not been kind to Larry as his face has

become

> very angular and his mouth gapes nearly all of the time, he is only now

> noticing that people look at him because heis different. I am pleased we

> had his ears done and hopefully when he gets his teeth and jaw done he

will

> be able to eat properly and keep his mouth closed.

> I guess what I am saying is every little bit helps, I

> made the decision for Larry and I do not regret it and I would do it

again.

> I am sending some photos of Larry in a separate email

to

> show you the

> transition his ears went through over the years. Sorry this is so long.

> Jan Hewitson, Mum to Larry 17 chaRgE

> Mandurah, West Australia

>

[Guest guest]

Hello there down under! My name is and My

husband's name is Ken. We have a 4 month old with

CHARGE and he has the ear problems too. He failed his

first two hearing tests, then they gave him an

antibiotic to clear up the fluid in his ears and he

hears fine. Hopefully that will remain the case. he

will have some vision loss as well. We are from

Virginia Beach, USA. It's nice to meet someone from

the other side of the world. Good luck to you in the

future and maybe we'll get to meet you at a convention

sometime in the near future.

Ken, , Maddy, and

--- Jan Hewitson wrote:

> Hi ,

> On the day that my son was born I

> was told that he would

> need plastic surgery on his ears but they would not

> be able to do it until

> the cartilage had " hardened " .

> His ears didn't match but that was

> O.K. we quickly got used

> to them and I thought they looked cute.

> The only problem we had with his

> ears was when he was

> finally given hearing aids at age 2 and a half we

> couldn't get them to stay

> on his ears without a generous strip of double sided

> tape. His ears were so

> small they had to given him hearing aids designed

> for babies under 12 months

> of age. He was given glasses at the same time and

> trying to arrange them

> both on his ears was often a trial.

> After his Choanal Atresia was

> repaired at age 5 the Plastic

> Surgeon at the Children's Hospital in Melbourne said

> it was time to do his

> ears. Unfortunately my then husband was posted to

> Canberra, so I got a

> referral to a Plastic surgeon there and we fronted

> up and asked him to do

> his ears. I was not impressed with the response I

> received, he said " That

> as only I had a problem with his ears and not Larry,

> he would not fix them

> and that I had to come back when they were a problem

> for him ! " Larry had

> the mind of a 2 year old and as yet hadn't noticed

> how odd his ears were,

> Larry had low self esteem and strange behaviours, he

> did not need to

> develop a phobia about his ears just to please a

> Doctor. Needless to say I

> didn't go back and as Plastic Surgeons were scarce

> in Canberra at that time

> I didn't pursue the matter at that time.

> When Larry was 7 we moved back to

> Adelaide and I took Larry

> to see the Cranio Facial Unit at the Children's

> Hospital in Adelaide. It

> took a while but eventually Larry was scheduled for

> surgery around the age

> of 8. I was keen to have his ears done as they had

> ceased to be cute as

> they had started to grow out from his head and

> dominated his whole face.

> The Plastic Surgeon told us he would need two

> operations one to make his

> ears the same and one to pin them back.

> The first operation went well and

> about a week after we

> went back to have the bandages removed. I was told

> not to expect perfection

> but when the Surgeon took the bandages off I cried,

> he looked so beautiful

> and best of all hearing aids stayed in place with

> out the tape, now he could

> take his glasses off without upsetting his hearing

> aids.

> The following year the second

> operation was done and I was

> very impressed with the results, his ears do not

> look quite the same but

> they make such a difference to his face, I felt that

> people looked at his

> face not his ears now.

> Puberty has not been kind to

> Larry as his face has become

> very angular and his mouth gapes nearly all of the

> time, he is only now

> noticing that people look at him because heis

> different. I am pleased we

> had his ears done and hopefully when he gets his

> teeth and jaw done he will

> be able to eat properly and keep his mouth closed.

> I guess what I am saying is every

> little bit helps, I

> made the decision for Larry and I do not regret it

> and I would do it again.

> I am sending some photos of Larry

> in a separate email to

> show you the

> transition his ears went through over the years.

> Sorry this is so long.

> Jan Hewitson, Mum to Larry 17 chaRgE

> Mandurah, West Australia

>

>

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