genetic counselling (linked to cleft pallet)

[lisa]

Hi,
does anyone know anything about genetic counselling and what it entails?????( in england)
i have an appointment at the end of june, and am a bit anxious about it.
my 3 year old had a submucous soft cleft pallet, and my 6 year old had pitosis- which is no muscle in one of her eyelids-- 2 kids, 2 ops and a few grey hairs!!!!!
just wondered if anyone else had any dealings with this kind of area, and if so--what you need to let them know.
also, does anyone know what kind of syndromes are associated with soft cleft pallets???


any info would be great.
cheers, lisa

[dolphindive]

You will need to know your's and dad's family history, details about your pregnancy, all medical conditions affecting your children, and I am not sure what else was asked of me. My husband was adopted, so we were missing all of his family history.
It was a bit overwhelming for me. I had seen a team of doctors and was in overload at that point. Not to mention genetics make me nervous. It seems as if you are under a microscope. Since the ultrasound that should Wes' cleft, he has been thoroughly examined by many. (doctors, family, friends, and complete strangers)
It seems when they look close they find something new to worry about.
Hope everything goes well and you get answers. Right down information you know you will need and questions. You may even call and ask what information they will need.

[lisa]

cheers for that-- we seem to be chatting alot- you repied to my other post about submucous cleft pallets.

i have started to look into family history but we are not in contact with my husbands parents ( not nice people- trust me!!)
so our info, like yours will be limited, but we do see his aunt so hope to get some info there.
it's really daunting!!
i will try to write it all down so i am clear for the day.
been waiting for a year for it so don't want to waste any time now!!!
speak again, lisa

[BabyZoey]

I had a genetics screening with Zoey because of her cleft. NOTHING else showed or came up! And genetics just now found a cause! finally!

Some of the syndromes/genetic reasons for clefts are:

Digeorge sequence
CHARGE syndrome
Trisonomy 13 &18
just to name a few

[lisa]

goodness me-- i'm going to have to do some research i think!!!

what are those syndromes????
does anyone know of any good web sites to research this???
thanks for replying.

lisa

[BabyZoey]

Widesmiles.org is a good site. That has all the different genetic reasons for a cleft. MOST clefts are isolated though- meaning nothing else wrong with the child.