Edwards syndrome *sensitive*

[Concernedandcwanttohelp]

My friend has had two babies which didn't go to term as both had Edwards Syndrome. She is devastated. I want to help/understand/be a sounding board if she needs me. If she goes on to have a third pregnancy, is she more at risk of the same thing happening or has she been a statistical anomaly and is no more at risk than anyone else?

The only "risk" I can see when googling is age. She's late 30s. Are there other factors? Is there anything she can do via genetic selection (sorry not sure if this is even exists or is legal).

I'm well aware I can't make things better, I just want to not say the wrong thing.

My only qualification is having read a lot of stuff about this kind of thing on the internet due to my own recent experiences. But, from what I understand, usually the recurrence risk with Edwards is no higher for someone who has had this happen before but there are some instances where it can be. Basically, there are different types of chromosomal imbalances and some can be passed on and some cannot.

I think your friend really needs to make sure that she sees a good clinical geneticist - which the NHS should be arranging/have arranged for her. It should be possible/have been possible to find out exactly what was going on with her babies' chromosomes which is the info that she needs to know about the risk of this happening again and how it can be tested for. If she had a CVS or amnio, I believe that they can use those samples to find out more about the chromosomes.

Having had something comparable happen to me very recently, I can't imagine what it's like to have this happen twice - it's my worst nightmare - I'm so sorry to hear about what she's going through.

Thank you notinagoodplace and I'm sorry you've had a bad experience too.

With regards to It should be possible/have been possible to find out exactly what was going on with her babies' chromosomes which is the info that she needs to know about the risk of this happening again and how it can be tested for. will this happen automatically? Or will she need to push?

Thank you once again.

How tragic to lose two babies this way I don't really know much about it, but my husband's cousin had a daughter born with Edwards. She was born at term and lived for about ten weeks, but never really thrived. They have an older child who is perfectly healthy.

My understanding is that the referral to a geneticist and genetic counselling should be automatic (it certainly has been for me) and that they ought to be doing some analysis of the chromosomes from both babies. However, if this hasn't been mentioned to her at all, that's a bit concerning and suggests that she might want to push for it.

We had a twin with a chromosomal problem and one was ok , we had to terminate the poorly one

When test from cvs came back we were invited for genetic testing and we were shown that we were not carriers of that problem therefore it was seen to be de novo or just random
Of she has had two babies then either they were issntical twins or there is some genetic problem which she should have been tested for before having another baby

She should have this testing before getting pregnant again