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From Our Mailbag

Pleae mail us with your questions, comments, stories and requests.  We'll do our best to answer in the upcoming issues.

 

I am writing to ask if you can help!  My daughter Ella is nearly 7 years old and we live in London, UK.  She was diagnosed with CHARGE at birth - her issues at first being bilateral (bony) choanal atresia, small VSD, unilaterial facial palsy, ear abnormalities, swallowing and feeding difficulties.  Her level of hearing could not at first be diagnosed because her breathing was so loud.

 

When she was about 9 months' old, the cause of her acute dysphagia was identified - she had a type II laryngeal cleft and required a nissen's fundoplication and tracheostomy.  We were told that her swallow was sufficiently unsafe for us not even to allow her to continue even having tastes on her tongue.

 

Cut a (very) long story short - we now have a bright, happy child who has come along leaps and bounds despite a very negative prognosis by her doctors.  She can finally walk unaided despite an absence of any vestibular system, her trachy has come out and speech is good (she signed fluently for years).  She reads fluently and seems to be roughly on a par with her peers at school.  Her main issue (aside from her hearing loss) is that she cannot eat. 

 

She has recently begun to question us as to why she cannot eat/feed - she feels isolated from her peers (at school, social occasions etc) and we're worried that she will become increasingly withdrawn.   She has 'failed' each swallow study and we've been told that she has 'missed her window' of opportunity for feeding.  I have promised her that we will go and see her doctor again but she has no pharyngeal swallow and as this is a reflex we are told that she cannot 'learn' to swallow either.  I think she may take this news from the doctor better than from us. 

 

However, I am trying to find another child somewhere in the world who has a long-term gastrostomy as we would LOVE to get in touch with them or their family.  Ella is desperate to to know that she is not alone.  There are lots of people with long-term g-tubes but they often have profound physical and/or learning difficulties so this has been no consolation to her.  I have searched on the Net for other children with g-tubes to no avail - most other ong-term users are aged stroke victims or terminally ill patients.  Don't think she'll feel the same as them either!

 

Editors Note: If you know a child similar to Ella, please contact info@chargesyndrome.ca and we will put you in touch!

 

 

newsletter submissions welcome - please send to info@chargesyndrome.ca