serious surgical question needs answer....

[Laura]

My daughter was born with severe cleft palate (bilateral) and
has to date undergon 3 surgical procedures to correct this (she
is 4). She still has a fistula. Her last surgery was to repair
this and to @push back@ the soft tissue at the back of her throat
as she has the classic speech problems. However, in the weeks
since the last procedure she has been really miserable and quite
annoyed that I let her have the procedure and I am now concerned
that all of our work to keep her in mainstream schooling will go
to waste as she is withdrawn and uncooperative in class now.



I am considering giving her a space of a year or so to
recover from the operation, hoping she will be more able to deal
with this by that time. However, I do not want to make the wrong
decision as this will obviously affect her and her ability to
interact with her peers etc.



SO - would anyone have any advice

[Susan]

Don't easy up on her. You don't want your daughter to think
because she has a birth defect that she is going to get special
treatment. I have found with my son that is now 8years old that
was born with a cleft palate and lip. That we don't treat him any
different than a child without a birth defect. My husband and I
don't want him to ever use his birth defect as a excuse for not
doing things. My husband was born with a cleft palate and lip
too. Please if you would like to talk more e mail me at
queensheets@ilovejesus.com God Bless, Susan

[a.m.]

I am a 33 year old female who was born with a bi-lateral cleft
lip and palate also. My treatment took place during the time when
every little detail was a separate operation: closing of the left
side of the lip-1 operation, closing of the right another
operation, closing the soft palate, yet another...so on and so
on. It's safe to assume that your daughter will not have as many
operations (28+) as I did, luckily, but this DOES NOT make it any
easier for your little one. I hope my post has some value for you
as I am not a parent, but I did live through this whole thing,
physically and emotionally. I disagree, to some degree, with the
other response of not easing up on your daughter. She's only 4
years old. There are plenty of 10 year olds who are terrified of
having blood samples taken. She's been through a lot already;
she's very strong. Let her know that. I can understand that you
would want to "give her a break" in her treatment, but
I do agree to the other response, that this would be unwise.
Though it is difficult for your daughter, and your family, it is
for the best. The time that she will be scared before, and in
pain after is minimal compared to the emotional pain that she
would experience if you didn't have her get all the
necessary/possible treatments. I think the time to spoil her is
shortly before and always after an operation/treatment---tons of
hugs and kisses. I am interested in the psychology aspect of how
people handle and understand their birth defects. She probably
has little idea why she is left to the hands of doctors and why
she must go through these procedures. I was a smart kid, but even
at age 12, I would get very emotional and ask "why do I have
to have this done??" I think it's helpful to her self-esteem
development that you don't refer to the operations as something
that will improve or correct her looks. She will ask what is
wrong with the way she looks now. It's an awful thing for a child
to think/feel. (I know). I'm not sure what the best explanation
to tell her why she needs these operations, but always let her
know that you love her no matter what. My parents didn't believe
in counseling, but I wish I had it available to me when I was
growing up. If your daughter's personality changes a lot, ie:
very social to very withdrawn, I think a counselor may be able to
help you get her back to feeling good. Good luck to you and your
family. If I can help you, let me know. email: amgula@sprynet.com