Missed Palate

[Ian lack]

Hi,
I am the proud father of an 11week old princess
called Emma, who's problem started 3 weeks ago.
After experiencing problems from birth with
feeding, being examined by 3 Paediatricians,
numerous mid-wifes and a couple of health visitors
, we trotted off to our family GP for Emma's six
week check up (albeit 8 weeks). Our GP took one
look inside her mouth, and said "has no-one told
you she have a cleft palate?" I'm sure you can
imagine we were shocked to say the least. After
all the 'experts' had done their bit, it took our
family GP to spot what was now something very
obvious, making us feel pretty stupid for not
noticing something ourselves. The guilt will
live forever, the hospital investigation has
started, but all I want is what is best for my
little girl.
We have now seen another consultant paediatrician,
who has referred us to a plastic surgeon and a speech
therapist/feeding 'expert'.
I guess what I'm looking for is a few words of
comfort and understanding from anyone who has
recently gone through any similar problems, or who's
son/daughter has had recent surgery, as I'm
finding it a little scary at the moment, but feel
I need to be strong for my wife Claire, and my daughter
Emma.
I look forward to any responses.


Ian

[Elizabeth]

Congratulations,Ian!
my son Samuele will be one on Oct.27. His surgery is
scheduled for this Friday, Oct.22. He has cleft of soft palate
and a bit of the hard.
As I have said on previous posts, feedign is the hardest part.
He used the Haberman Feeder with pumped breast milk mixed with formula.
He also had reflux, so he was hardly taking anything in. We just went for a weight check 2 days ago
and he weighed 14lbs.10oz. He's a peanut!


The best I can tell you is, when ever you try something new-like bottle or solid food..- give them time.
They choke easily, and in Sammy's case, it scares him. But he eventualy learns what to do.
Please write if you need any personal info.
Good luck!
Elizabeth
e-mail= jlreale@erols.com

[Anonymous]

Ian,
I am writing to tell you about my daughter Maya. She is a identical twin with a cleft lip and palate, whose twin is not clefted. We were very shocked and scared when our daughter was born. With patience and unconditional love you will suceed. The best advice that I can give to you about your son, is to give him time and to try different bottles with him until you find one that works for you. Other things that we have done for our daughter...She has an obturator which was made for her by our local prothsodontist. Basically it is made of denture material and fits like a retainer. The purpose of this obturator (which we call "teeth") is to "plug" up the palate to help the food to stay where it belongs. Maya just went through her first surgery 2 1/2 weeks ago and tomorrow is getting new "teeth".
One other sugestion if you are having feeding problems, contact the dietician at your local hospital because they can give you healthy ways to increase the amount of calories your son is taking in in a day.
If you have any questions for me feel free to e-mail me at jenjohnson47@hotmail.com

[kelly]

Hi, my name is kelly. My son Blake is 4 1/2 months old with a cleft of the soft and hard palate. It took a while for the doctors to find Blakes cleft too! It was really hard for my to accept this "change of plans". I would recommend you find a cleft team in your area. we have one, and it has been a life saver. They have so much knowledge that was helpful in the first few weeks! congradulations on your new baby

[kelly]

Hi, my name is kelly. My son Blake is 4 1/2 months old with a cleft of the soft and hard palate. It took a while for the doctors to find Blakes cleft too! It was really hard for my to accept this "change of plans". I would recommend you find a cleft team in your area. we have one, and it has been a life saver. They have so much knowledge that was helpful in the first few weeks! congradulations on your new baby

[kelly]

Hi, my name is kelly. My son Blake is 4 1/2 months old with a cleft of the soft and hard palate. It took a while for the doctors to find Blakes cleft too! It was really hard for my to accept this "change of plans". I would recommend you find a cleft team in your area. we have one, and it has been a life saver. They have so much knowledge that was helpful in the first few weeks! congradulations on your new baby

[cj]

Hi Ian, please take a look at my posting on help me understand a cleft in the back of the throat, posted on Nov 12. We had a doctor that did not find my grandsons cleft palate, but the nursery nurse did. He did not make a big deal about it and sent her home and told her he had the mildest case. What is mild? We are waiting for an appointment to see a surgeon and a new doctor. How can a doctor miss a huge whole in the babies throat and it is so visible to the naked eye? Please keep me posted on you sweet baby and congradulations and good luck