1.5 YEAR OLD DAUGHTER WITH CHARGE

May 22, 2000

Hi Niamh,

Welcome to the list. Where in Ireland are you from? We live in S.W Scotland

which is not too far away!!

My son Jack is almost 3 years old and has CHARGE. He is totally g-tube fed

and is not interested in feeding orally although we are working on it. Feel

free to e-mail me privately if you want to discuss this. Jack had heart

defects (VSD,double outlet right ventricle and pulmonary stenosis) which

present like TOF. Has Emer (what a beautiful name!) had surgery to correct

her TOF yet? If not,when do they intent to operate? Jack is still waiting for

a catheterisation to find out if he can have the surgery sooner rather than

later. He was supposed to have the cath in March or April but there is a

shortage of anaesthetists at Yorkhill so we are still waiting!!!

Good luck! Things do get better.

Elaine mum to Elise (8yrs) & Jack(2.5yrs) CHaRGE

Dumfries,Scotland

May 22, 2000

I am from Ireland and there is not much info. avaible about Charge

and

I was wondering if anyone can tell me about Charge children when they

get older and what kind of lives they can have. My daughter Emer has

severe Tetralogy of Fallot , Atrsia of the choanae, and has some

minor

problems with hearing. She has always been feed by an ng-tube and

was

wondering if anyone has any tips for weeaning her of the tube feeds.

If anyone has any questions for me I would be happy to reply to them.

Niamh Foran

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