Need to ask quite a sensitive question

[Memoo]

My cousin has just found out that the baby she is expecting has Down's syndrome.

She and her husband are trying to get their heads round it all but I'm really worried about my cousin. We spoke this afternoon and she sounded so down. She said she feels like her life is over, that she'll have to spend the rest of her days looking after him and she's not sure she can do it. She said she'd even been thinking about abortion. I really don't know what to say to her, how to support her. I think she is still in shock tbh.

How do I help her to see that her life isn't over, it's just going to be different than she expected. How do you get your head round knowing your child is going to be dependent on you forever? Does everyone go through similar feelings?

Any other advice on how I can support her would be really welcome.

[1980Sport]

Oh goodness! Not sure I'm best placed to provide advice but didn't want to read and run!

For us it's been a slow sinking in that DS is unlikely ever to live independently so very different from your cousins situation! What has helped me though is just meeting other families further down the line if that makes sense, seeing that life does go on, families are happy, children are happy - different to what you'd planned in your head but not necessarily worse!

I hear really good reports about the Down Syndrome Association so maybe it would be good if she got in touch with them I'm sure they can provide her with all the support she needs at this difficult time! And not forgetting MN - would she post on the forum relating to antenatal testing?

[looneytoons]

Perhaps she could meet a family with DS child then she could talk through how they felt when they found out their child would have DS . They may be able to help ease her fears. I think she will need time to think this through before she makes any decision on what she wants to do. You just need to be there for her and support her whatever her decision.

[Memoo]

I'm always mentioning MN to try and get her on here but so far she has resisted. Will tell her about the Down's syndrome association.

[coff33pot]

Firstly I am really sorry for your cousin :(

She has a tough decision to make and it would be good to have you as a friend to lean on whatever decision she makes.

I was in my mid thirties when I was preg with my second child. My DH didnt have a any children and it was his first. She didnt have downs but this is how I was treated.

I had the normal blood tests you have when pregnant. Week later I get a phone call from GP reception. "you have been booked into XY hospital its to do with your blood test"...........that was it Phoned back and asked what was wrong. Told baby could have downs your blood test shows high chance, dont worry about tomorrow and dont watch Eastenders tonite (baby was born with downs on it)and the phone went down.

I was in a state and I had to break it to DH. When we got there the man was foreign with an english interpreter and not a good one. Was told the poss outcome and the test that they were going to do. The chance of miscarrying anyway (I had lost two babies) Did I want the test and what would I want to do keep the baby or abort. If I abort then I would have to have the baby naturally as this test was done at such a stage that that was the way it had to be. Now bear in mind all this is in your head and you have to make a decision and you havent even had the test yet.........

She didnt have downs and I had 6 weeks of hell to wait for that result. I had my second child at 41 and told them to sod off having the test.

Your poor cousin must be going through hell and back. All you can do is support her in her decision whatever she chooses. You cant tell her that her life will just be different as it is she and her partner that has to live it (and I am not saying that to be unkind

She is lucky to have you x

[Memoo]

That's a good idea about meeting other families. If she could talk to others who have been where she is I think it would help hugely.

[Memoo]

Thanks for sharing that coff x

[amistillsexy]

It must be very hard to hear that your unborn child is likely to be disabled.
Much easier to find out when you've already got that child in your arms, and fallen in love. Once you've gazed into your own child's eyes, other things seem less important.
Unfortunately, your cousin has learnt this news before she has got to know her darling child. All she has at the moment are her worries, but she needs to get back to focussing on her beautiful baby, and all the wonderful things that she was imagining before she knew about the Downs Syndrome, because most of those will still happen!
One thing I do know, from my 3 cousins who all have Downs Syndrome (they are in their twenties now), is that the syndrome can affect people in different ways, but does not necessarily mean that the child will need to be cared for, for life.
One of my cousins is an actor, and travels all over the country with his theatre group. They regularly go abroad to festivals, etc, and he thoroughly enjoys his life. His brothers are more dependent, but no less happy. They are capable around the house, and actively involved in social groups that they love attending. Their favourite activity is to go to cafes with their mum. Yes, it's a quieter life than most of us would choose, but it is a life that they love! Their Mum has also ensured that they have learnt to look after themselves, and has put into place plans for them to be cared for when she is no longer able to.
Many people with disabilities have PAs who do the things for them that they can't do themselves. The PAs are paid for using Direct Payments, and the disabled people have total control how these are spent. There is no reason why a disabled child should grow into an adult who is dependent on their parents, although it is a little too soon for your cousin to hear all this!

For now, all your cousin needs to do is focus on having a baby. Not a disabled baby, not a baby with Downs Syndrome, just her baby.

I know I've rambled on a bit here, but I really feel for your cousin. It is for exactly this reason that I am vehemently against these 'screening' tests, because they put pregnant mothers in such a desparate situation. But that's another post altogether!

[devientenigma]

Hi can I just add for your cousin to not get caught up in peoples experiences too much, they are all different just as any other child is. You don't know what the road is going to be like until you are travelling that road. I feel your cousin is in a better position to deal with this whilst pregnant, she will also be able to come to terms with this earlier and so be able to bond with her baby earlier if not when s/he's born. She is in a much better position to read facts on down syndrome before s/he arrives. I personally feel if you are reading peoples experiences or meeting families you need a good mixture of differing issues etc in so seeing the spectrum of the syndrome. HTH x

BTW I am a parent of a 10 year old son who happens to have down syndrome.

[2old2beamum]

I am an adoptive mum to 3 with down syndrome now in their 20's they are absolutely fabulous, they make my DH and my lives worth living. We are so proud of them. It has been quite hard work as we made few allowances for their disabilities and have treated them the same as our homegrown offsprings. They are so understanding of others needs, they humble me.
And by the way they were not out looting last week! Remember a baby is a child first

[coff33pot]

Memoo The only reason I shared it was purely to show you that it wasnt just a case of screening. Its how they do the screening that puts you in turmoil and turns you upside down. They were then unable to tell you how severe your baby was likely to be but real off all the possibilities of what MIGHT be which adds to worry. This was only to help you try to understand what might be going through your poor cousins head

My decision was to keep my baby regardless but DH wasnt sure what to do as it was his first child. Personally I know 3 downs children/teens and I think they are the most kind, loyal and loving individuals I could ever meet.

[Memoo]

Thanks so much for the replies, it's much appreciated and they're very helpful. I'm going to try and convince my cousin to join MN. I think she'd get so much support on here and will be able to talk to people who know how she is feeling.