CLEFT LIP?? WITHOUT A CLEFT PALATE???

[Dale Mc]

WE WERE JUST INFORMED (24 WEEKS PREGO) THAT OUR BABY HAS A
VERY SLIGHT CLEFT LIP. I AM WONDERING FROM OTHER EXPERIENCES CAN
YOU HAVE JUST A CLEFT LIP WITHOUT A CLEFT PALATE? WHAT ARE SOME
OF THE HEALTH ISSUES WE WILL FACE? I AM JUST VERY NERVOUS AND
VERY UPSET BECAUSE I AM SO UNINFORMED AND KNOW NOTHING ABOUT
THIS. MY E MAIL ADDRESS FOR ANYONE WITH INFO IS
bdmac@bellatlantic.net THANK YOU ALL!!

[Jennier]

Hello. I just thought I would reply to your post because my
daughter was born with a unilateral cleft lip on the right side.
The positive thing about your situation is that you are only @ 24
weeks pregnant, and you know the problem and have time to do some
investigating & inquiring so that when the time comes, you
can make informed decisions regarding your child's health care. I
found out when my daughter was born (as do a lot of people) I'm
not real sure what it is that you want to know? Everything? My
daughter had her surgery in Feb 1998. There is a lot of very
useful information on this web site actually. Have you seen any
pictures of a child with a moderate looking cleft? I have before
and after pictures of my daughter that I could e-mail to you if
you are interested. Let me know what kinds of questions I can
help with & I will be more than glad to try to help! Jennifer

[Jennifer]

Hello! Congratulations on your pregnancy first of all! Having
a child is truely a wonderful time in a person's life. Just
remember, through it all, that your child is perfect, no matter
what. Okay, that said, count it positive that you found out about
the cleft now. This time before the big arrival will give you
time to become educated about clefts. This will enable you to
have the knowledge to make informed decisions when the time
comes. You might consider trying to consult with a
craniofacial/plastic surgeon now to get some questions answered.
I know that the suregeon who did my daughter's surgery was a very
good source of information. My daughter was born with a
unilateral cleft lip on the right side. It has just know been a
year since her surgery. I'm not real sure what you mean when you
ask about health problems? My daughter didn't really have any
health problems because of her lip. She didn't have chronic ear
infections like some babies with palate invovement, she was
breast & bottle fed and she did fine with both types of
feeding. The only"problem" she had was the fact that
she could not get enough suction power to hold a pacifier in her
mouth, but the older she got the more thankful I was that I did
not have to go through the agony of trying to break the pacifier
habit. Any way, I would be happy to try to answer any questions
you might have, or help in any way I can. By the way-have you
ever seen any pictures of a child with just a cleft lip? It is
really not quite as upsetting as seeing a child with a bad cleft
lip & palate. If you would like to see pictures- let me know
I can e-mail you before and after pictures of my daughter. Good
Luck & Let me know if I can help Jennifer

[DALE MC]

JENNIFER...THANKS FOR YOUR WORDS. I AM GRATEFUL THAT I HAVE
THIS TIME TO RESEARCH AND ACTUALLY LEARN SOMETHING THAT I HAD NO
IDEA ABOUT. I HAVE ONE QUESTIONS...HOW OLD WAS YOUR DAUGHTER WHEN
THEY DID THE SURGERY? SEE I WAS BORN WITH NO HEARING AND THE
SURGERY WAS PERFORMED WHEN I WAS 4 YEARS OLD> I HAVE RESTORED
HEARING IN ONE EAR (THANKFULLY IT WAS NOT DAMAGE AS BAD AS THEY
THOUGHT). I BELEIEVE THE SOONER THE BETTER ESPECIALLY WHEN IT
COME TO SOMETHIG WITH GROWTH. ALSO, YOU HAD NO PROBLEM BREAST
FEEDING? I GUESS I AM JUST NOT KNOWLEDGEABLE ENOUGH ON THIS
TOPIC. WELL ESPECIALLY BEING A MOTHER FOR A FIRST TIME AND NOT
HAVING ANY FIRENDS OR RELATIVES WITH CHILDREN.



AGAIN THANKS FOR YOUR WORDS. DALE

[Jennifer]

Hi Dale! To answer so of your questions first. My
daughter(Mackenzie) was a little over four months old when her
surgery was performed, but the surgery was originally scheduled
for three months. The problem arose that she was exposed to
chicken pox at the babysitters, so since the surgery was not
'medically necessary' it was post-poned to the next available
date. Mackenzie had absolutely no problems breast feeding. Her
surgeon was even recommending it after the surgery (he put in
regular sutures instead of disolvable ones so that she could
breast feed after surgery) Her sutures stayed in for one week.
The only mouth related problem Mackenzie had was that she could
not keep a pacifier in her mouth, but that was really nice later
on because I did not have to break her of that habit. Most
surgeons & doctors I talked to go by the rules of 10. They
usually do surgery when the child is at least 10 lbs. This is
because the child can tolerate a general anasthesia better as
well as some other reasons. I have encountered articles on this
site about a child having the cleft revised around day seven of
life. That is amazing to me. Our surgeon told us that most of the
time a child with cleft lip only will have surgery around 3-4
months of age, and then could possibly have another surgery at
about 3 years. The second surgery is usually strictly cosmetic
& to help with the scars look before the child starts school.
The surgeon said a third surgery could be possible, but usually
when the child is in the later teen years & chooses to have
more cosmetic type surgery. I hope I haven't scarred you more,
but there are actually some good info on this site relating to
cleft lip only. There have been conversations between myself
& Yvonne (her daughter also has just cleft lip) we talk about
complications a lot too. Let me know if I can be of more help...I
have loads of info to share if you have any other questions! Good
Luck!!!! Jennifer

[Emily]

Hi Jennifer, I was reading your posting to Dale who was asking
about baby's with a cleft lip but not a cleft palate. I had a
beautiful little girl one week ago. She has a cleft lip but not a
cleft palate. I have been reading lots of information but have
not been to see the plastic surgeon yet. Lisa (my new baby) is
doing very well and having not problems with breastfeeding. I am
concerned about her surgery. How was the recovery for your baby?
Was your baby in a lot of pain. How long was her recovery? Could
you e-mail me before and after pictures? My e-mail is
emdunlap@aol.com. Thank you.

[Lisa90]

Hi, I too, found out my son had a cleft lip while I was
pregnant. I had no idea what that was and my dr was concerned of
a cleft palate. I met with a genetic councilor to try to
determine how it happened. To this day we are still uncertain. My
son was born in October 1995. When we went into the labor room, I
prayed & prayed the sonograms were wrong. My beautiful boy
was born with a unilateral cleft lip. The first words out of the
delivering nurse was that his palate was intact. We had surgery
done a 4months and today he's a terrific three year old. I wish
you alot of luck. I learned that in the grand scheme of things it
could have been so much worst.

[Lisa90]

Hi, I've been reading your posts on this subject. My son was
born three years ago with just a cleft lip. We knew about it
before he was born but the dr was not sure if he a cleft palate.
We went to genetic counciling but we are still not sure why this
happened. He had surgery when he was four months old. He was
uncomfortable and had to wear arm splints but overall I don't
think he was in that much pain.(Tylenol seemed to do the trick).
Lisa

[Jennifer]

Emily, did you get my e-mail from 4-3-99? Bye Jennifer

[reeds4 (Pam Reed)]

I have a daughter with a cleft lip and would like to see your
before and after pictures. My e-mail

[Jennifer]

Hi Pam. You didn't say how old your daughter is or if she had
already had her surgery? I would be happy to send you before
& after pictures. The only problem is that your post just
said-my e-mail. The actual address is not in your posting. If you
could give me your address, I will gladly send you some photos.
Jennifer

[Jennifer]

Hi Pam. This is the thrid time I have typed this posting.. so
hopefully it goes through. Anyways, I would be glad to send you
before & after pictures. How old is your daughter & has
she had any surgeries yet? I am getting ready to send some other
people in the discussion group some pictures of my daughter, the
only problem is that your e-mail address was not on your posting,
so if you will give it to me-I'll attach your name to the list.
Jennifer

[Jennifer]

Hi Pam. You didn't say how old your daughter is & if she
has had any surgeries yet? I can gladly send you before &
after pictures, but your e-mail address was not in your post. If
you will send it to me via the discussion list or e-mail me at
jcol411@netusa1.net then I can send them to you. Jennifer

[wing947@aol.com]

My son was born with a bilateral cleft lip and no cleft palate
i will not tell tell you it will be easy but it does get better
after two surgerys poeple can't even tell he even had a cleft
lip. if i had a scanner I would send you pictures. he is now 16
months old and is as beautiful as ever. if you need to talk
e-mail me at wing947@aol.com i'll be happy to talk to you

[wing947@aol.com]

My son was born with a bilaterial cleft lip. after two
surgerys you wouldn't believe it if I told you. They do a
wonderful job. I'm not going to tell you that it will be easy but
it will get easier. If you need to talk e-mail me at
wing947@aol.com