SOFT PALATE

[STOOFDENIAL@MSN.COM]

MY GRANDDAUGHTER IS A WEEK OLD AND SHE WAS BORN WITH A SOFT
PALATE. IS THERE ANYTHING THAT CAN BE DONE FOR THIS . SHE IS
HAVING A HARD TIME WITH THE BOTTLE. SHE IS ALSO HAVING HEARING
PROBLEMS. SHE WAS PREMATURE ABOUT 1MONTH. THE DR. TOLD US THAT HE
THOUGHT THAT SHE WAS BORN DEAF. BUT I DON'T THINK SO. SHE USE TO
CRY ONLY WHEN THE OTHER BABIES CRIED.COULD IT BE JUST FLUID BUILD
UP FROM THE HOLE IN HER MOUTH. ANY SUGGESTIONS FROM OTHER MOTHERS
WOULD BE APPRICIATED. E-MAIL ADDRESS STOOFDENIAL@MSN.COM THANKS ,
FROM A WORRIED GRANDMOTHER.

[jlreale@erols.com]

Congratulations, Grandma! I just wanted to tell you that your
granddaughter probebly has a "cleft" of the soft
palate. All humans have a hard and soft palate; hard in the front
of the mouth and the soft area in the back near the throat. With
our children, they have been born with a deviation in the
development of the "roof of the mouth". Sometimes it is
the whole area, sometimes it is either the hard or the soft
alone. My son, and it sounds like your grandchild, have a hole in
the soft part of the palate. It does make feeding difficult, have
you tried all the available nipples? If see is breastfeeding,
have mom get a GOOD lactation consultant who knows about clefts.
If that doesn't work, she can do what I do. I pump my milk and
give it to Sam in a regular bottle with a Habermen Teat
attatched. They are VERY expensive and wear out TOO quickly. All
she needs is extra time and attention and you'll get used to
taking care of her! They are high maintenance babies, but SO
endearing! I wouldn't have my son any other way!! We see a cleft
palate team and an ENT every other month. It's important that you
keep up with the Dr. appointments. After surgery she should be
fine. I would consult right away with an ENT to check her
hearing! Good luck!!

[tcwashburn@msn.com]

My son was born in December with a cleft of his soft palate.
We tried breast feeding, but to no avail. According to the
surgeon our son is seeing, very few cleft palate babies can
create the suction necessary to latch on. We have decided to feed
our son with a Haberman Feeder and we use formula. Please let me
know if your grandson is using this bottle as I received some
good tips from a occupational therapist regarding the use of this
bottle. We were told that our son would have trouble with ear
infections due to the cleft, which may be the same problem that
your grandchild is having. Luckily, my son has only had one ear
infection, but it made him very aggitated and his appetite seemed
to wane.



I have to agree with the other response you received. Cleft
palate babies are high maintenance. However, due to the extra
time that must be spent with them, I truly believe that you will
feel closer to him than other grandmothers. I know that this is
true for my mother.



Please contact me at tcwashburn@msn.com if you would like to
talk further. I would be glad to share with you everything I have
learned as well as point you in the direction of some very good
resources.

[Kara]

When my son was born with a cleft lip and palate he failed
every hearing test and they were worried. We took him to an ear
nose and throat specialist and he said that the fluid in his ear
was blocking him from hearing. At six weeks they put tubes in his
ears to help the drainage problem and that worked great. he can
hear and turns in the direction of voices just as any other baby
would. As far as feeding, we used a soft bottle that we could
sqeeze since he could not suck very well. We also used an
orthodontic nipple that we cut a cross in to allow more fluid
out. That worked well for us, and isn't as expensive as the
Habberman Feeder. Good Luck. my son loves his Grandmas and I'm
sure yours will too.

[Andrea]

My daughter was born with a cleft palate as well, she is 11
mos old. We fed her with a haberman nipple and it worked
wonderfully for her. Her weight gain was very slow at first but
by four months she started gaining weight more quickly. If you
have any other questions you can email me. My daughter had her
palate repaired on April 19 and sailed right through it like it
was nothing!



andrea_showalter@yahoo.com

[onephillip@yahoo.com]

Would you please let me know where can I get the orthodintic nipple or habberman feeder.
My nephew was born with clift lips and palate.
I need to find out as soon as possible since this happen in other country and they can not afford it, but I'm trying to help them.
Your pront response will be greatfully appreciated.
Thanks
Phillip
ps. I reside in the state of Florida.

[deblmatt@yahoo.com]

My son was born with a cleft palate in 1992 and had many ear infections before the palate was repaired. Even now he has problems with them and sinus infections. He also had partial clefting of the hard palate also.