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thankyou everyone for your responses, whilst i don't want others to have to go through this it is good to know we are not alone if thaat makes sense. Annie's genetic condition was found at around 6 weeks as the test was done a few days after birth due to her cleft palate. I like lots of your suggestions and will be trying some out. But one issue we do have is that they seem to think they know better than the professionals. because like others we have to fight to get services my parents particularly seem to think they count for nothing!

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