Early palate repair

[Anita]

I am interested in finding out as much as possible about the
experiences of parents who have gone the non-traditional route
for treatment of cleft palates. We are considering the very early
palate repair for our son (due in May), but we need to know
everything we can learn about what we should expect. Thanks a
lot! My address is: johnnita@mvp.net

[Trecia Coble]

I am all for early repair, I can't imagine waiting the length
of time other Dr.s suggest. My son was operated on at 14 days on
his lip and palate, feeding and talking was right on target with
other non-cleft children. I wish you all the best. Please be
careful about picking a Dr for this , some Dr's may do 5 or 6 a
year, My Dr. did 7 on the day my son was operated on. More
experence means better results!!

[Christal Cullymore]

My daughter had her lip repair done at 5 days old. We are
seeing our PS for pre-palate surgery consultation on 03/29/99. He
strongly believes in early repair. It breaks my heart to see all
these poor babies that do not have their repairs done early. I
hear of so many stories about feeding problems before lip repair.
Why on earth would a doctor allow an infant to go hungry and be
at risk when most times something as simple as lip closure can
show dramatically positive results. I wish you luck. Hopefully
our palate surgery will be in mid-April, or early May. By the by,
my daughter was born on 10/03/98. Just so you have some idea of
our time frames. Good luck!!!

[Tom]

We talked with five different plastic surgeons after our son
was born with a unilateral, incomplete (saved by the Simenard's
band [sp?]) cleft lip and bilateral cleft palate. Two talked
about the possibility of an early repair and two quoted an
approximate time of about around the first birthday. When asked
for the basis of their view, each said that it promoted better
speech development and either aided in or did not interfere with
anterior-posterior growth of the upper jaw. When we got to the
fifth doctor, his view was that you want to time the closing of
the palate when the child first starts learning to talk - making
two syllable sounds - usually around the first birthday. The
advantage to waiting is that it can promote better
anterior-posterior growth (so that the upper jaw doesn't look
recessed). But, you don't want to let your child learn to speak
with a hole in the roof of his mouth and then close it - that can
cause a major setback in speech development. At least that's how
it was explained to us. There are, howver, many factors involved
here. And, I don't think it's helpful to refer (as one of the
earlier commenters referred) to those who don't have early repair
of the palate as "poor babies." My son was one of those
"poor babies." For him it worked out well. For others,
early closure may be absolute the right thing. Especially if it's
going to help promote better eating. The timing of the second
repair - the repair of the palate - was one of the most
controversial subjects we encountered in dealing with our son's
cleft. I would urge parents to ask their doctor questions about
this and ask them to explain their views. If you can't get a good
answer, keep on asking questions. Get second, third, and more
opinions --- as many as necessary to help YOU understand what
YOUR child needs and what is best. And don't buy those
mumbo-jumbo, "I'm the doctor - trust me" answers. If
they can't explain their views to you and what goes on medically
that makes their recommendation the wisest, I think you need to
keep asking questions and consider a differnt doctor. You are
going to have a long time to second guess your decisions and you
owe it to yourself and your child to do the most you can to make
an informed decision. We can't be perfect parents - you will
undoubtedly make mistakes somewhere. I, personally, wanted to be
able to say that I made the best decision I could based on the
information I had. To do that, I talked with a lot of doctors and
a number of parents of children with cleft. Tdmcclure@aol.com