effects of cleft lip and palate on family

[Stephen Heleniak]

I would like to know more about the effects on relationships
of family members, such as mother and older sibling.

[jennifer]

Hello. My name is Jennifer. I have a beautiful little girl
named Mackenzie that is 13 1/2 months old who was born with a
unilateral cleft lip. I was so thrilled to find this site because
this is the type of issue that most people I come into contact
with don't really understand. It was hard to deal with Kenzie's
cleft in the beginning because everytime someone looked at her, I
could just tell that they were focusing on her cleft. She was
also born with bilateral hip dysplasia, which meant that she was
fitted for a harness when she was four days old. It was very
difficult for me to believe people when I was told how beautiful
she was because I thought they were just trying to be nice to me
or feel sorry for us. I knew my daughter was beautiful & it
just took me a little while for me to realize that that was all
that really mattered. I am a single mom that is going to school
full time for a nursing degree with the hopes of working at the
hospital where my daughter had her surgery. Anyways, it was and
is a hard experience, but my daughter is gorgeous & I am so
glad to have found this site & I would love to hear from
anyone else



My e-mail address: jcol411@netusa1.net

[ccro100539@aol.com]

hi jennifer, i read your letter you didnt say if clefts run in
your family?? i have a 11 mo. old daughter who was born with a
incomplete cleft. however i have a great uncle with a cleft and a
brother also. i had to respond when i read that you felt as
though people were looking at her cleft. i myself am very
conscience of that also.i didnt want to take her out at first
because i didnt want anyone to say anything about it. didnt
really want to discuss it i guess. i havent had not one person
tell me how beatiful my daughter is even though i think she is
the most gorgeous thing ive ever seen. i am having great
difficulty with the emotional side of it more than i thought i
would. i havent really talked with anyone about it either. how
have you dealt with it? have you experienced guilt or anger?? i
would love to hear from you. my name is Yvonne and would love to
talk with anyone regarding how they have dealt emotionally.

[Trecia Coble]

Yavonne, If you need someone to talk to, I would love to talk
to you , my son now is 5. You can e-mail me at karazenn@aol.com
or you can call me at 423-470-2245 My name is Trecia. If you need
to talk call me anytime. I've been through the same and know how
your feeling, if I can help in anyway, please let me know.

[Jennifer]

Hi Yvonne. I was really happy to discover that someone had
responded to my post. Here's some answers to your questions. As
far as I know, there was no history of any type of clefts on my
side of the family, or her father's. It was really hard to deal
with her cleft lip in the beginning because of many factors. One
was the stress of being a single mother. It was very
heartbreaking to hear her father ask (when he first spoke to
anyone about her birth) what all was wrong with her, not is she
pretty, does she look like me or her mother, etc. It was hard
because she was also born with hip problems that required a brace
to be worn for approx. 5 weeks twenty-four hours a day. I had a
lot of guilt in the beginning. I kept thinking that it was my
fault that my daughter was born with so many problems. After our
first visit to the local children's hospital where my daughter
would have her surgery, some of my guilt started to diminish. I
realized that it wasn't my fault ,and it also made me grateful
that a cleft lip was all that my daughter had. I am not trying to
downplay the problems associated with the entire cleft problems,
but at least my daughter would live. Yes, there would be pain and
problems all through her life, but it should be a long HEALTHY
life. I also experienced anger, but like I said above, one visit
to the hospital put my priorities in check. My experience has
been even more emotionally taxing because when my daughter was 4
months old her father died. He was killed by a drunk driver. He
had never seen our daughter, mainly I believe due to her medical
problems. However, she was his only child & much to my
disbelief, his family still has little to do with my daughter.
That has caused more stress for me than anything we have gone
through relating to her cleft. It is still hard because everytime
that we get new pictures taken, even the most well meaning
friends, comments are made to the effect "you can't even
tell she has a cleft." I just want to scream ENOUGH
sometimes. I live in denial a lot I guess, but sometimes it's
nice to forget for a while, but usually I just tell myself &
my daughter, it just means she's extra special & one of a
kind that can never be repeated. Hope this helps! Jennifer

[Anonymous]

hi jennifer, yes you are right when you said you had your
feelings put in check and its not the worst thing in the world to
have a child with cleft at least they are healthy. i just had
friend whose baby died during delivery and it made me think of
all the anger i went through when my daugher was born (i didnt
know she had a cleft till then) it made me feel ashamed how
shallow i was and since then i havent looked back and it changed
my whole way of thinking. im a much stronger person now and deal
with my daughters cleft so much better. she is going into surgery
dec. 3rd i would love all the prayers i can get out there. i know
it all helps. and yes i know i hate everytime someone mentions
her cleft (which is all the time)"i like that picture best
it doesnt show her cleft" and so on you know the same thing
people say who think there not hurting your feelings. but im
learning to not let it bother me anymore. your story has been
inspirational to me and i think of you often now. you are a tower
of strength. my prayers and thoughts are with you and would love
to hear from you again. yvonne my email add is ccro100539@aol.com

[Barbara Gomez gomez@1000i]

I have three kids and the middle one John was born in July of
94 with a full and partical cleft palate and he's my bud and my
older child has been there with it all and then he hasn't had any
surgerys with the younger child but all is the same as with each
child love them all

[Barbara Gomez]

I have three children and John my middle child has a cleft
full and partical cleft palate and lip and he is treated the same
as my others and it was really stressful at frist and I was not
sure if I wanted the third baby but I am glad I had all three and
I think that there is no diffrents in the treatment of the kids.

[tracy webb]

I have a 2 year old beautiful daughter, Cassidy Rae who was
born with a unilateral cleft lip and palate. She has had several
surgeries and is done for a while. If you live near Nashville, TN
you may want to meet Dr. Thomas Orcutt - he is the best and
Cassidy's cleft is truly hard to recognize. I'd love to elaborate
- webb8396@aol.com

[Anonymous]

Dear Tracy, I read your notice and was moved to write to you.
What I wanted to tell you is that perhaps, if the cleft is not
extremely noticeable, perhaps you should consider not putting
your child through the procedure. I too was born with a cleft lip
and palate, and opted not to undergo surgery. I felt that there
must be purpose for having been born this way and rather than put
that opportunity aside, I embraced it. Granted, my cleft was not
very severe, but it is hardly something that you wouldn't notice
on first meeting me. Still, I wouldn't change a thing about my
face, and feel that way to this day. I was teased mercilessly
during my school years, had few friends and seldom dated, but I
just couldn't bring myself to undergo the procedure. Part of it
was perhaps not wanting to do another procedure of any kind; the
trauma of it is difficult to understand, but it certainly isn't a
wonderful experience. But for the most part, I think that the
reason was that I felt that I needed to be me, and my face is one
that I was used to. Even at an early age, I felt that the fact
that I didn't like the way I looked had more to do with the
feelings people projected on me, rather than that it was ugly.
Part of that understanding came from the experiences that, at the
time, were very bitter, but on the whole raised my consciousness
to a point where I could reason such thoughts at a higher level
than the children my age. In the end, it mattered little to me
that I never underwent the procedure to "correct" the
cleft. Though I had few friends, those I had were steadfast and
true. I dated little, but eventually met a wonderful and
beautiful woman and we settled down and had our first child. Our
second is due any day now, and we are on pins and needles waiting
for her to arrive. Growing up sensitive to others feelings has
made me a good husband, I'm told, and a good father. Nothing
means as much to me as my family. Life has a way of handling
these little "problems," but we have to be willing to
do the difficult thing sometimes to get that benefit. There is
always time to decided to let your daughter have the cleft fixed,
but there is only one chance to let it remain and trust that it
has a purpose. I'm not telling you to DO this, only urging you to
consider it, something I doubt anyone else will suggest. I simply
want to offer another option. In my case it certainly was the
right one. Though sometimes my life has been painful, it has all
served to make me who I am, and I like that person and wouldn't
trade that for the world. To be honest, most of my most painful
moments weren't connected with my cleft lip, but a triad of other
things. And it isn't hard to instill confidence in a child with
this condition; my folks did it with ease because they loved me
and wouldn't let a day go by in which love wasn't evident. That
did more for me than any medical procedure could ever do. Thanks
for hearing me out. If you would like to write and comment on any
of this, or ask any questions, please feel free to at
jccole9@yahoo.com. I promise to return your letter as soon as I
possibly can, considering that I'm a parent. (Parenthood: The
toughest job you'll ever love...) Sincerely, j.c. Cole