Edwards Syndrome - how best to support a couple whose unborn baby have been diagnoses?

[PussinJimmyChoos]

Friend's of ours are expecting their 2nd baby. They have found out it has Edwards Syndrome (Trisomy 18). The baby has survived this far into the pregnancy and due date is imminent. The couple are very very upset and so I wondered if any other mnetters had any suggestions for help and how DH and I, as their friends could best support them?

Diagnosed rather!

Boy or girl?

Definate dx?

It doesn't have to be the end of the world. I read about a girl with the syndrome and she was doing really well, aged 9.

My 3rd baby was flagged up for having it and all we knew was that babies can die soon after birth or before they are 12 months - usually other complications, but this girls story proves it isn't always the case.

Sorry to hear that your friends have had bad news about their baby. I don't have any personal experience of this. I imagine that their baby (and hence parents) will be spending a lot of time in hospital after the birth - so practical help with food/laundry/chores/childcare/shopping etc may be of use to them.

Its a boy. I'm assuming they have had all the required tests to show it is definately Edward's Syndrome (the DH didn't go into much detail with my DH as they have only just got to the stage where they can tell people about it iyswim?)

I didn't think about the food issue....they have a massive family though so I'm sure one of the mums will be staying, cooking etc....but will definately ask if they want something along those lines!

It is less common in boys which is why I asked if they had had definate diagnosis.

I would do what I would have done when the baby comes if he hadn't had had any problems. Still visit, send cards, buy a gift, etc.

Obviously in terms of stress and emotional issues your friends are going to be going through the mill as well. possibly if you look at websites by parents of children with Edward's Syndrome that will give you an insight as to what your friends are likely to face.

I've done that - was in floods after reading it because DS is a boy so it kind of hits home harder iyswim? Feel more informed now though which is a good thing.

Definitely plan to visit and buy gifts - I think the most important thing for any parent of a disabled child is that they don't feel as if people are staying away, treating the child any different just because its disabled

be there for them and encourage them to try and enjoy whatever time they have with the baby, whethers it 2 minutes or 9 years.
Don't stay away as so many people avoid those with disabled children. I know CP is different but would they like to meet dd Puss? And see what a joy she is? Its possible they have never met a disabled child before and there's this huge fear of the unknown.
Send me a txt but it might help them see the 'child' past the diagnosis because first and foremost, they are having a baby.

Not sure if they have been pointed to S.O.F.T UK - it is a support organistion for Edwards syndrome and related disorders.

It might be too early for them to look right now but I know this organisation has been a support to my best friend after her daughter was diagnosed. My friends case was severe and her daughter didn't survive the pregnancy and died at 22 weeks.

Agree that cards and gifts will be appreciated.

NMC - Thats a lovely gesture and thank you. I'll definitely suggest it but not sure if they would be up for it...they can barely talk about it at the moment - took them ages to even tell us!

Ps - and your DD is a joy - loved her laughing away with my DS on Friday!