A question about Down's syndrome [WARNING - Could be upsetting]

[JaneFonda]

I have a question because I genuinely don't know the answer. I would never look to offend or upset anyone, and this is definitely not coming from a judging angle.

One of my best friends is currently awaiting results for tests to see if her baby has an increased chance of having Down's syndrome.

I was talking to her about it, and she'd been reading about possible options, eg. termination.

I am genuinely unsure - why do some people choose to terminate a fetus if it has Down's syndrome? Absolutely not judging anyone's decision, it is none of my business, but I suppose I'm wondering what the dangers are if a baby is born with Down's syndrome?

I have only met two people with Down's syndrome, and they have seemed, well, perfectly healthy. I understand about the mental aspect of it, but physically - are there problems?

I would really appreciate any answers you can provide, it's a scary time for my friend and I'd like to be able to support her without seeming totally ignorant.

DS can come with lots of health problems, heart and bowel mainly afaik. Some people also don't feel they can provide the lifelong care that a child with DS may need, nothing to do with health risks.

The degree of physical problems can vary a lot. Some people with Down's syndrome are born with major heart defects. However increasingly these are fixable. Having a child wih Down's syndrome will change the dynamic of a family and the care they need will be different from that you expect to give a NT child BUT of course any child can have an accident or develop an illness that impacts in the same way. There are no guarantees.

Website for the Down's Syndrome association here May be useful for you and your friend?

As a mum of 3 adopted children (now adults) with Down Syndrome I obviously cannot see the negatives. Yes the 2 DD's still have complex heart problems but they get on with it, they both went through mainstream school and got 2 &3 GCSE's apiece (not grade A). DS is severely deaf, poor sight and epilepsy thrown in for good measure. Above all they are so kind and thoughtful every week they put £2 away and at Christmas choose a charity last year it was the homeless They frequently buy DH and I little gifts.
They have never stopped us doing anything, they have travelled to many countries. We eat in smart restuarants and they have never let us down.
Sorry if I sound syrupy I am not usually! It is not the worst birth abnormality.

some poeple terminate for disabilities, some do not. It wouldnt bother me. A baby with DS that is.

I love Kelle's Hampton's blog. She has a little girl with DS that is my DS2's age and I have followed her story. She is the mother I want to be. I really think that since I've read her blog, I've changed the way I think about DS completely.

The severity of DS can be huge.......some babies with it do not survive the pregnancy or live long after birth due to their problems. I think because people see DS people living full and happy lives, they assume that the problems are not necessarily severe, and therefore cannot understand reason for termination.

I say this as a mother of a child who had a (not DS) chromosone abnormality and didnt make it....

I have worked with young people witsh Downs Syndrome and almost all had serious, life-limiting heart defects, to answer your question.

Personally, I would find it very hard to go through with a termination in such circumstances. My son is autistic and I wouldnt be without him. I do understand why people are frightened by the prospect, though, and I dont judge.

These people maybe of some help too www.arc-uk.org/

I think a lot of people do it out of fear and lack of information.

My dd has a severly disabling life limiting condition (not DS) but I wouldnt have missed these years for anything. Even a second.

so does mine(not life limiting) and feel the same way, untestable CP that can happen to anyone at birth.

I have to say, I would worry a lot, about what would happen to a disabled child of mine after I had gone! Not something I ever gave much thought about before, not til I read a MNers post about her own worries. Scary thought with the 'cuts'

KalSkirat can I ask if you knew before your child was born? Tell me to get stuffed but i only ask because...

We terminated for Edwards syndrome - and I doubt very much our baby would have made it to the end of the pg (dr's said not), or ever left the hospital....but I often wonder If i should have given them a chance......I was scared about how to look after the rest of the family while going through it all too...

I never thought I'd terminate in a millions years, but thinking that and actually getting a diagnosis is real life just blew me away....

it is a worry Lilac and keeps me awake at night but it doesnt stop me wanting dd to live for ever and being bloody glad she survived as long as she has

No feelinghappy and if I had known I wouldnt have terminated. Having had a baby and was told she would die within hours every single second was worthwhile. Just to meet her and be with her.
But thats just me.

2old2beamum - thank you for your lovely post, it was not syrupy. I had an older much loved brother who had DS, now sadly gone, and what you've said has made me think I'd like to look into adopting or working with DS children. I don't know why I haven't thought of this before. Is there an organisation or is it through usual adoption/fostering routes?

feelinghappynow sorry to hear that, you shouldn't feel guilty. you did what was best in terrible circs. sorry I know you weren't asking me.
I always thank god that CP can't be tested for. (I think imo it would be better if DS couldn't be,)

Kal - thankyou - you're a braver lady than me - i was so scared.........it was our 2nd child and i thought i'd be a rubbish mummy to dc1 if i continued a pg that was going to end in stillbirth, but i often feel a rubbish mummy for not giving my child a chance, even for a few minutes...

I had a distant relative with ds who lived to a fine age of 60 plus.

Unfortunately she did suffer in her later years with heart problems (which would now be addressed in the early years) and also dementia which I understand is common.

Saying that she had lived happily in supported living for many years after her immediate family past on :)

Thank you seven thats why i opted for c-sections with my other dcs as i was terrifed of something going wrong if i had a natural birth.....

My little sister has DS. In my mum's case termination was considered for the following reasons:

The possibility of serious defects (heart mostly, but bowel and lungs too I believe?)

The fact that my mother was in her 40's with health problems and a single parent. She had to decide how fair she thought it would be bringing a child into the world who may end up in a home.

My little sis is 3yrs now and at the stage of a 2yr old and doing so well. She doesn't really talk having had limited hearing (which they believe is improving) but is learning makaton and signs really well. She doesn't really have any health problems either.

My personal view is that the authorities implicitly encourage terminations in the case of the baby having DS. As a result, people begin to automatically think that having a child with DS must be the worst thing ever.

There are plenty of other disablities (where the child will require just as much care) that you cannot test for so I don't understand the specific fixation on DS, although I realise these types of screening tests also pick up chromosome abnormalities where the consequences for the child will be more severe.

PearsBeaufort, you can go through your local SS but we have used adoption agencies also and on the whole we found them more proactive. If you want to do it go for it, its the best thing I have ever done. Please feel free to pm me.
Sorry about your lovely brother I expect you have many wonderful memories.