cleft palate repair

[KHMCCREEDY@AOL]

My nephew was recently born with a cleft palate and our family
is understandably upset. I am trying to research the subject, and
find out who is considered the top in the field. I am also trying
to find out when the best time to repair the palate is. We are
getting conflicting information and advice, with one doctor
recommending the palate be repaired as early as possible (three
months of age!). Can anyone out there direct me to articles that
will substantiate that advice, or refute it? I'm also trying to
find the pros and cons of surgery to repair the cleft. Any help
or direction would be greatly appreciated, as I am a novice at
this internet stuff, and have already spent days looking around
without too much success. Thank you very much!

[Trecia Coble]

I can only speek from experence in saying that the earlier you
have the surgury done the better. My son was operated on when he
was 14 days old. It was the longest 2 weeks of my life, although
feeding was still a task after the surgury he was basically a
normal child. I dont know what i would have done if we had to
wait untill 3 months old. Because it was repaired so early, he
was able to smile and coo at the same age as other children. Dr.
Magee is as far as I know the only surgon in the country to do
repairs so early, Check him out!!! He is the founder of Operation
Smile and as far as my family is concerned he pretty much walks
on water.He is located in Norfolk Va. I hope my oppions help in
some small way.



Trecia Coble



karazenn@aol.com

[Barbara]

My son was 10 months old because they want him to drink from a
cup before they fixed his palate and the hardest part was just
giveing him liquides no soilds... I think it would have been
easyer to fix it at a younger age but by that time we had seen
three plactis surgen so no one agrees with the other the doctors
seem to know whats going on it had to turst them on some of their
choices but it will all work out in the long run......

[Karen Bergquist]

I'm new to the internet and this site but I thought I would
respond to your question because it seems like as I read other
people's stories my child was treated differently than others. My
daughter was born with a cleft palate only. She was in NICU for
two weeks because she couldn't eat on her own. Once released she
had her first operation when she was about 7 weeks old. Our
plastic surgeon implanted a prosthetic (sp.) in the roof of her
mouth. This stayed in place until she was a year old and allowed
her own palate to grow. By the time she was a year and the
prosthetic was removed her palate opening which was 24 ml when
she was born was only 5 ml. All our plastic surgeon had to do was
attach it together. Now our daughter who is 2 has no problems
whatsoever. She doesn't even have food or fluid come out her nose
when she eats. Has anyone else had this done to their child? Our
plastic surgeons name is Dr. Louis Morrales and he is at Primary
Childrens Medical Center in Salt Lake City Utah. I'm happy with
the way we handled our situation but every case is different.
Find a good doctor. That is what is important.

[Kara]

I have a 3 month old with a cleft lip and palate. I am also
from Utah, but chose to have the repairs done at Utah Valley as
opposed to Primary Childrens. Our pediatric dentist, Dr. Kevin
Marcham, fit our little guy for a retainer when he was one week
old. It sticks to the roof of his mouth with a little fixodent
and we can remove it to clean it. It is his best friend and aids
with feeding tremendously. They will be fixing his palate at 9
months and they also said that may give it time to come closer
together on its own. It was neat to read that your childs did
improve with time. Good Luck to you in the future.

[Denise]

Our daughter's cleft palate was repaired 4 years ago at
University of Texas Medical Branch at Galveston by the Shriner's
Hospital. I know a lot changes in four years but they told us at
the time they waited for the child to be a year because they
wanted the child to weigh at least 12 pounds. They anticipated
them to lose a pound going through surgery. Also they said the
mouth needed to be large enough so the surgeon could get his hand
in there. We sought the help of Shriners because the surgeon in
the Texas Panhandle does two cleft palates a year where the
surgeon in Galveston averages four a week.

[Anita]

My husband and I are expecting a son around May 6, and he is
affected with a cleft lip and palate. I am trying to find out as
much as possible about all of the alternatives to the current
standard of medical care. I would be happy to e-mail you directly
if you like to discuss this further. I am hoping to find out how
children who have different treatment or surgical regimens are
faring. Does your child seem to be speaking normally? Did your
child's prosthesis have to be adjusted weekly? Did the prosthesis
provide suction for the baby? Were there feeding problems after
the surgery? Thank you very much! johnnita@mvp.net

[Bella]

My daughter is now 5mths old, and still waiting for surgery.
She started smiling and cooing about the same age as my best
friends baby. To me she is a normal child, the surgery will just
make her life easier, not more normal.

[oliver21999@CS.com.]

Hi. My Name is Stacy. My Son Oliver was born with a soft palate cleft. He had surgery at Yale New Haven Hospital performed by Dr. Persing. Dr. Persing is a Plastic surgeon in the craniofacial unit at the children's hospital. His surgery was performed when he turned 9 months. My advice to you is to go to a reputable hospital and make an appointment with a Dr. in the craniofacial department who will answer your questions.
The surgery is a must because without it your nephews speech will be unintelligable pending on the severitiy of his cleft.
Please feel free to e-mail me with any more questions. Sincerely, Oliver's Mom, Stacy