Will this get better

[Lorna]

My daughter is 3 years old with a cleft palate. We have now
found that the "tonsil" like thing at the back of her
throat is split into two small stumps. Will this ever get any
beter for her? She has already had two operations, is undergoing
weekly speech therapy, but is beginning to stand out from her
friends. She is shy, and is resorting to making hand signals to
make people understand her. I already feel guilty daily for her
being born like this, but what more is this going to do to her?
Please can someone help me? I am in England, and the network does
not seem to be so strong over here. I am at my wits end. I really
need some advice.

[Roger Thompson enb.bristo]

Dear Lorna



you might wish to contact the Cleft Lip and Palate
Association 31, Nutbush Drive, Northfield Birmingham B31 5SJ. Tel
0121 477 3090

[Frank Angella]

I live in the UK and have just found this website. Although
much of it realtes to Canada and USA, it was reassuring to read
that many of the procedures are in fact very similar. Our
daughter is 10 months old and was born with unilateral cleft lip
and palate and had her second operation last week. This was to
close the palate and it went quite well. Our worries now have
turned to things like speech therapy and orthodontic treatment
she may need. It would be great to read the experiences of anyone
out there who has gone through all this. Thanks in advance

[amgula@sprynet.com]

Dear Frank, I went through the entire treatment for a
bi-lateral cleft lip and palate. If I can answer any questions
for you, please let me know. Sincerely, AM

[Frank Angella]

Thanks for your reply. What can we expect to happen next ?
What are your experiences of orthodontic treatment ? Did you need
any speech therapy ? Were you teased or ridiculed at school ? How
long ago was your treatment ? One thing we have learned is how
much things are constantly changing in this field regarding
methods of treatment and so on. Any way you can enlighten us
would be much appreciated. Thanks.

[am gula]

I think because my cleft was bilateral and because the
advanced techniques that are being used today were only in the
early stages or even non-existent when I began treatment, that my
treatment took particularly long. For example, I saw a baby in my
surgeon's office who had 3 stages of treatment during one
surgery, when years ago, because I was treated very
conservatively, the 3 stages meant 3 separate surgeries. I'm
definite the treatment overall is shorter and less painful.



My parents did put me in speech therapy very early, I think
at age 2. Even though my cleft reaches the far end of my palate
(it was closed), my speech is perfect; unindicative of any cleft
problem.



Part of most treatments for cleft palate is bone grafting,
where the surgeon grafts bone from the hip into the fistula or
fistulae (for a bilateral). I did not done at the age that is
recommended today. I think maybe the technique was not perfected
or developed, or maybe my parents were too scared. I decided
myself to have it done at age 27. Unfortunately, the graft did
not take and I have to have it redone. All of the other surgeries
combined were less painful as the bone graft surgery. Young
adults have the best luck with that.



Prior to that surgery, I had braces applied (for the second
time). I got them removed only last night (yay!) I am at the
deciding point of whether to have the surgery again.



I think, and I'm not sure if there is any truth to this: that
because I did not have the bone graft surgery as a younster, that
the separated palatal segments caused my nose to get even wider
than normal with this condition. I've read that there are many
causes for excessive widening of certain facial features(even
food allergies) The end result of all my reconstructive surgeries
turned out very well.



When I was in JR High and early SR high, I was teased,
especially by males. I always had best friends, so I was never
truly alone. I did not have any psychology treatments as a child
or an adult to learn how to deal with all of it. I wish my
parents believed in it. In my 20's I disliked myself so much
because of this; the condition I could do little to change. I
went to counselling to learn to accept myself. Now I do.



Best of luck to you and your family. I hope I've answered
most or all of your questions. If I can answer any other
concerns, please write.



Am

[Kristin Kretschmer]

This WILL get better. I am 27 years old and was born with a
cleft lip and palate. The best thing my parents did for me was
not to let me feel bad for myself or that I wasn't normal. If you
don't recognize it as a deformity and you treat it as just an
extra challenge she has, you both will feel better. She will take
her cue from you.



It's not your fault either. I have never sought to blame my
parents in anyway - it's just the luck of the draw. Things will
be okay. Trust me

[Kristin Kretschmer]

Hi Frank, I am 27 years old and was born with a cleft lip and
palate. I can tell you that from what I've seen, kids getting
surgery today look great! I won't tell you it's easy. I don't
have any speech problems and I did not have any speech therapy.
Alot of people do not recognize any facial difference on me. I
have a slight scar on my lip and slightly uneven tip to my nose
(maybe I'm being too kind to myself - I'm no Claudia Schiffer,
but I get by).



But as I said, it wasn't easy. The best thing my parents did
for me was to treat me normally. They never felt sorry for me or
let me feel sorry for myself. Operation after operation, when I
was hoping to come out model beautiful, my parents would ooh and
aahh at the improvements and tell me I looked great but generally
did not make I big deal out of it. I think this attitude is
beneficial. Growing up I went to catholic school with the same 30
kids for 8 years. These kids knew me and accepted me. No big
deal. Highschool was a little different, but it can be painful
for anyone.



Treating your child as if there is nothing wrong is the best
gift you can give them.

[Anonymous]

I sure as hell would like to meet you.



Drop me a line sometime.



juand@msn.com

[Ros]

Hello Lorna. My daughter was born with a cleft of her hard and
soft palate. The uvela (hanging tissue) was also split in two.
Since her repair her uvela is very small but I was told this
would not affect her speech. She is 9 1/2 years old now and her
speech is inconsistent. Sometimes she sounds a bit high pitched
and slightly nasally and at other times she sounds great. When
she was younger she was quite nasally sounding but as shes
getting older its not quite as noticable. She had a small amount
of speech therapy at 2 - 4 years old but nothing since. She is in
grade 4 and has not had any trouble with teasing although she
definately sounds different from other children her age. I have
had many hard days agonizing over her speech and what I can do
for her but so far none of my fears or worries have materialized.
Please reply if you would like further information.

[dustin]

I am a 19 year old male from Seattle, WA. I have gone through
many surgeries and have my final surgery in two weeks. If you
have any questions e-mail me to: Jarii19@aol.com

[Robin <ajhuerth@midpla]

Good luck with your surgery!!! I have a daughter with a cleft
lip/palet. She is a fun, loving, 6 year old. She goes to
kindergarten all day and loves it. We have NEVER treated her like
she had a disability and really tried not to let other people.
She talks alot about "the space she once had in her
lip",and she will tell anyone who will listen. Thanks for
sharing. Again GOOD LUCK!!!

[Lorna]

Dear Ros - Thanks for the advice. You really seem to have it
covered. I hope that I can give my daughter the same support you
have provided for your child. Please email me if you want. as I
am a bit short of advice over here! Again thanks for the reply,
and to everyone else who replied. It seems there are a lot of us
about all in the same position, or who have been there. Thanks
everyone. It makes a difference to know that we arent the only
family in the same situation.

[Lorna]

Deara Kristen - thanks for your sound advice, and for taking
the time to post the message. i really appreciate it. I posted my
first message when Chloe and I were having a really down time -
her surgery was a faiure and speech therapy seemed to be not
working, but things are slowly improving. I hope my daughter has
the approach to life that you have as she grows up, as she wont
go far wrong. thanks again for replying.



Email LMclean727@aol.com

[Kristin]

You caught me on a "fire and brimstone" day.