My niece

[Bottleofbeer]

I could go into the ins and outs of my sister's background but suffice to say she has an alcohol problem and she drank heavily throughout her pregnancy. My niece was born at 30/32 weeks (fairly big leap there but opinion on her true gestational age was divided) so not terribly premature yet she was in a bad way and needed ventilating for more than two weeks which I now know at the time they don't expect babies who need ventilating at that gestation for that long to survive.

Anyway my niece is deaf with a condition called auditory neuropathy, not much is known about it as it's a fairly recent term.

She is now four years and two months old. She was assessed yesterday and her developmental age is 18-20 months - a global development delay. I know some about this as I trained in early years education and 'specialised' in SEN but nowhere near enough to get a grip on what exactly this means for her.

All the signs imo point to fetal alcohol syndrome. My question is just how badly delayed is this and what can we expect for her future? Is this likely to be a lifelong thing where she will always be delayed?

Seeing as starlight's no longer here, I'll have to say what she always says:

"Children who make the most progress are the ones who's parents have the highest expectations."

So never listen to any professional who tells you what your child won't do.

GDD tends to be a catch all dx that can change into something more specific as she gets older.

At this stage you can't tell what her future will be like. So keep doing the most you can for her, keep expecting her to progress and improve.

And keep posting here....

Totally agree with IB and Starlight. I was told my Ds wouldn't survive to virth, then that he wouldn't live a month and then that he would never walk or talk and would have no quality of life.

He does still have provblems but he can walk, can talk and cognitively is doing better than many of his classmates!!! The docs don't know it all. xx

Sorry just seen this my daughter also has AN and she's doing really well with a cochlear implant. There are a few experts in the UK and treat varies hugely depending on the individual. But with the right support she can achieve.

Some children with enough of the right input close the gap, some children even with every input available never close the gap, for some the gap gets bigger IME. The best way to have the optimum outcome is to have a good team of people working together along with the child's parents or carers. Dd at 24 months was developmentally 6 to 12 months by four she was developmentally on target now at 8 academically she is exceptional and she has no delays anywhere. It can be done.

Doctors, especially, have a habit of guessing prognoses and then presenting them as fact. I was told all sorts of guff when my son was a baby, none of which turned out to be true and so have many other parents. It was absolutely nothing to do with me having high expectations or fighting for every therapy going, and all to do with early mis-diagnosis.

Contact-a-Family has an information sheet about FAS which could serve as a general introduction. I would hope it isn't assumed that it is FAS and I imagine your sister should be offered genetic tests for her child to rule out other syndromes