Saturday, 12 October 2013

Downs Syndrome awareness month, day 12

Maybe one day I'll be able to write about when we were told Ella had Downs Syndrome. It was all wrong on many levels and a very negative picture of the future for my 18 hour old baby was painted. 

It was very clinical and unduly stressful (bear in mind that Ian and I have had training in 'breaking bad news' and have a good idea how it should be properly done). We were left with a stack of leaflets which were basically given to us to answer our questions instead of the health professionals. We felt very alone and the sense of 'unknown' was overwhelming.

I will never get those first days with Ella back and I still feel very cheated by the way our situation was dealt with. 

There is a great need to educate health professionals about DS today, not what they know from out dated books or experiences from past decades. This open letter by Noah's dad is a good start even though there is a long way to go...

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