I wish I could give some more constructive advice. I have seen a few downs syndrome children in our local children's hospital with a trachy, but I don't know how they go about being suctioned. Is there a website for carers of downs syndrome children that can help. Where abouts are you? Is it possible to get a second opinion?
I have never heard about the 1 in 20 mortality rate. In our case Grace would have died if she hadn't been given a trachy. Does the consultant realise the implications re suctioning your daughter? I do hope that things work out for you. Olga
Mum to Grace age 8 1/2. Subglottic haemangioma. Decannulated 19/12/03 after being trached for 3 years & 3 months.