How best to help my friend who has just had a baby who has been diagnosed with a rare genetic disorder (not life limiting but will affect him for the rest of his life)?

[Snapster]

Our dear friend had a baby about a month ago. She had no problems at all in her pregnancy till right at the end when just one minor thing happened and they decided to deliver the baby a little early, just to check everything was ok.

He was born, seemed fine but was kept in hospital as the doctors suspected something was up. We kept in contact and she was very much of the 'I'm sure he's fine' brigade and they did genetic testing, nothing came up and they went on their way.

I got a text last night to tell me that the baby has a rare genetic condition (I don't want to say it on here in case she comes to mumsnet as I'm going to recommend she does!). It will affect so many things in his life (education, his ability to walk, his ability to ever lead an independent life ). I feel so sorry for her. She's very young and it's her first baby.

She has said she'd like to pop around next week. I can't wait to see her and nor can the children. But what I wanted to know (and esp from people who have been through this), is it better to talk a lot about it or should we do the positive angle thing? I know her well enough to know how devastated she will be and all the uncertainties about the future and I think the hardest thing is that he looks so perfect and gorgeous now (and of course he is!) but he still looks like any other baby whereas of course, as time goes on, he won't develop that way .

Definitely talk about it. If it were me, it'd be all I wanted to do at this stage. Let her talk mostly, I reckon.

yes, good idea. I thought when she disappeared for a bit that something must be up. Am pleased she feels up to seeing us though.

agree with rotateyourhead. follow her lead. if she doesn't feel like being positive, then don't try and force it. she'll have a lot of thoughts/fears/worries to process. If mumsnet doesn't seem her cup of tea, netmums also has a special needs board, and special kids in the uk is also a good forum.

being supportive doesn't necessarily mean telling her everything will be alright. I found it annoying and upsetting when everyone kept telling me ds would be fine; if I didn't know and the doctors didn't know how they hell did they know?

recognising how difficult living with the uncertainty is is important as is admiring the baby as you would anyone else's.

Unless the doctors have told her,that the genetic condition the baby has (even though it is a rare one ), has happened before in other children and that they know x y z will occur, they may be talking best guesses. This is what they did with my Ds, he has a rare genetic condition, they couldnt find any one who has had it before so they gave me a list of all the things that it might mean for him. He is now 4 just started in reception and is developing fine.
I didnt mind talking about it to any one. I found because he looked like any newborn baby the condition didnt come up in conversations unless i mentioned it. The only time I found that I needed to mention it as when talking to medical people and school so that they where aware.