Need info on early repair

[Jon & Christi]

Just found out yesterday through a detailed Ultrasound that
our baby boy will be born with Cleft Lip and/or Cleft Palate (not
sure if Unilateral or Bilateral). In looking at all the Web-sites
and individual histories I didn't see much on Early repair. Can
anyone direct me to more information on pros & cons of early
repair? With a very early understanding of this condition it
would seem to me that early repair would always be the best
option. Do some Hospitals/Doctors not perform early repair?
Thanks for any information that you could provide to us.

[jowsto1@flash.net]

My son was born 9/23/97, and I also found out through a
sonogram that I was having a baby boy with a cleft lip. (I was
devastated!) After I went to a sonogram specialist I was told it
involved the lip and nose as well as the bone (the gum line), I
wouldn't know until after the birth how much of the palate was
affected (but was told since it did involve the bone it was
probably complete) he also told me it was unilateral (one side).
The specialist gave me some information on a plastic surgeon and
a childrens hospital that has a team that repairs cleft lips and
palates. Me and my husband went through an interview process to
find out how this particular surgeon would go about the repairs.
This surgeon would have my son come in at 1 week after birth to
be fitted for an appliance for his palate (this fits around the
sided of his gums and under the roof of the mouth; similar to a
retainer) which helps in the feeding process. He also wanted him
brought in 2 times a week to have the appliance tightened (very
small screws that would bring the palate closer together) Then at
3 or 4 months he would repair the lip, nose, and palate. After
the visit, I kept looking around to find out if there were any
other surgeons around that perfomed this type of surgery and what
their procedures were. I finally found one that came HIGHLY
recommended (he was even on our insurance). His methods were
different from the first surgeon and I felt better about his
reasoning on why he repairs the lip and nose at 3 or 4 months and
why he waits to repair the palate at 1 year. The palate on my son
by 4 months had come closer together that he had to be refitted
for another appliance (the orhtodontist had never had to do this
before). I felt better about this process because it allowed the
palate to come closer together on its own and allow the upper jaw
to continue to grow normally until the surgery for the palate
repair. So far this has worked out great, my son's palate is so
much closer together now than when he was born. When the plastic
surgeon saw him for the first time he said he likes wide clefts
because they are easier to repair, so if your son has a wide
cleft after he is born, don't worry, because at 3 or 4 months the
cleft comes so much closer together and the surgeon is able to
work on it alot easier than when they are first born. I
personally think waiting until then is best. I've also been told
they don't like to put babies under anesthesia until they are at
least 10 weeks or 10 lbs.



I also interviewed pediatricians before the birth of my son
and asked them if they have had any experience with the care of
babies that have had the cleft lip/palate. I finally found a
great one! Also, one more thing... ear infections are a BIG
problem in babies of cleft palates, so if your baby starts
screaming crying like never before, he very well could have an
ear infection. My son also go tubes put in his ears with his
first surgery (there was a huge difference in the way he reacted
to things around him). I hope all this jabber helps in some way.
If you have any other questions or comments please let me know.



P.S. There are pictures of babies with unilateral and
bilateral complete and incomplete clefts on the internet in case
you weren't aware.

[Kari (Kazy308@aol.com)]

Hi. I don't know alot about early repair but I would like to
share what I do know. My understanding is that doctors have had
very good results with these early repairs. However, my doctor
suggested waiting until my son was 10 weeks old. (Not sure if you
are meaning to do it earlier than that.) The reason behind this
is to wait for atleast some facial growth. Facial growth can
affect the repair and the look of the scar. As I said I am not
extremely up on this issue but would love to discuss it and help
in anyway possible. My son is now 3, he had very severe
uni-lateral cleft-lip and absolutely no palate at all. His
repairs to this point are very good. Physical appearance is very
impressive. Good luck and hope to help if possible.