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

(154 Posts)
JaneFonda Fri 24-Feb-12 17:29:46

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.

marshmallowpies Fri 24-Feb-12 20:21:50

I have a childhood friend who has DS and is the same age as me (mid 30s) - in her case affected just mentally rather than with any life-limiting physical conditions, as far as I know.

She had a very happy childhood and is a very bright, funny, articulate person - but she has found adult life a struggle as she went to college and subsequently had a part-time job which brought her a lot of satisfaction - then she got made redundant from it and ended up very withdrawn and on anti-depressants.

She has done voluntary work since then and has lots going on in her life, but I think because she's at the brighter end of the DS spectrum, she realises she'll never drive a car, go on holiday by herself, live independently, etc and it is very hard for her to accept these things.

This is what was probably a tough thing for her parents to face - having given her a happy and stimulating childhood, taken her on exciting holidays, ensured she got the best available education - the one thing they couldn't control was whether she could also have a happy, fulfilling adult life as they got older themselves & approached retirement.

In the end, going into sheltered accommodation with other people her own age was definitely the best option for her to get as much independence and fun as she could - but presumably her parents have to ensure they can set aside enough money to maintain this after they are gone. Making those kind of decisions as you approach retirement is probably one of the toughest things, especially if you have other children to consider too.

deemented Fri 24-Feb-12 20:31:42

Making the choice - or not - to terminate because of abnormality is a huge, huge thing, and whilst we can all say 'Oh, this is what i'd do if..' it's only when you are actually faced with it that you begin to understand the enormity of it.

And i truly believe that you can only make decisions based on the information you have at the time - hindsight is a bloody wonderful thing.

feelinghappynow Fri 24-Feb-12 20:37:53

Thank you again for the kind comments, and deemented I'm in total agreement.

We never tested, it showed on our 20 week scan.

Sittinginthesun Fri 24-Feb-12 20:38:32

I also decided against having the initial tests at 12/13 weeks. I was the only person I knew who didn't. My midwife and doctor were surprised, and made copious notes!

I didn't want to have to make a decision.

BabyGiraffes Fri 24-Feb-12 20:48:20

I had cvs when pregnant with my second dd for a number or reasons. My sister's first baby had trisomy 18 and died a few hours old - they were completely unaware that there was a problem and it took them years to recover and try again; I wanted to have a fair warning. Both dh and I are 'older' parents so the risk is increased. We worried who would look after a child with DS after we'd be gone. We worried about what caring for a disabled child would do to our relationship. I have done a lot of work with families with a child with DS and saw the effect this had not just on the parents but also and in particular for other siblings. I did not want my dd1 to be in a position to be expected to care for her brother/sister in the future. I know all about the possible health problems a child with DS may or may not face. I also know that it is impossible to predict how severely disabled this child may be. And I know that a large proportion develop dementia in their 30s, adding insult to injury.
My dd2 was born healthy and I will never know what we would have done if the cvs had shown a problem. I do realise that most of our reasons for testing were selfish, but each family is different.

2ombie5layer Fri 24-Feb-12 20:49:17

Thanks those of you who have said why you haven't tested. As I said I am very aware I am in the very minority. Perhaps thats what makes me unique to others. I would just personally rather know there was a high chance and prepare myself even if I decided not to take any more tests and keep the baby anyway. I just think it must be a big shock when baby is born and that is the first knowledge of any difficulties.

Though I must say here that I was 5 when my sister was born so not aware how much of a shock it was to my mum, but she has told me she wanted to test more, but the midwife said that everything would be fine and not to test. I think its the one thing my mum regrets is not pushing harder for more tests, she says she just knew there was something.

smallwhitecat - I think I explained myself quite clearly and I can't help but think you're being deliberately obtuse. If I were put in a position where I had to become a full-time carer for one of my children or another family member, I would do it. But I would not do it if I had the chance to avoid it. So I wouldn't hesitate to terminate. No doubt I would grow to love that child if I didn't terminate, but why put myself and my family through the hardship for someone I've never met?

The OP asked why people would consider a termination for a baby diagnosed with DS. I told her why. If you don't understand my reasoning, well I can't help that. Personally I can't understand why anyone would make like more difficult for themselves than it already is.

Dontgetpithywithme Fri 24-Feb-12 21:05:35

MN doesn't reflect the national statistics. The figs show that the vast majority choose to terminate (94%) but this is also a misleading stat as it includes those babies with DS that die in utero, which is also high. I look at it the other way - the 6% who do make it are little miracles.

I think you can look at the stats concerning DS and get frightened and only see the DS, and not the person who also has DS.

2old2beamum Fri 24-Feb-12 21:23:40

PearsBeaufort thankyou for your kind words. I will let you into a secret
--I am 68yrs (hence my name)DH 65 and given your personal experience you would be probably be welcomed with arms. We are old farts Good luck x

Booboostoo Fri 24-Feb-12 21:26:07

I think it's a very personal decision.

I used to think that I would NOT terminate in such circumstances until I volunteered with adults with disabilities and life was very tough for them and their families. Their parents, who used to be their main carers, were by now in their 70s and finding it extremely hard to cope with the demands of looking after someone who was still mentally immature but physically a grown adult. Social services support was scant and it was not clear what would happen to these people when their parents died. For example, social services were suggesting that a 40 something year old woman could live on her own with one visit a day by carers to check up on her despite the fact that she had uncontrollable epilepsy (amongst other multiple problems).

It also seemed to me that while they were children they had a good support network with school, friends, activities, etc. but after they left school they led increasingly isolated and lonely lives.

This may not be eveyrone's experience and it may not be true of everyone, but because of it personally I have changed my mind and if I knew I would terminate.

marshmallowpies Fri 24-Feb-12 21:46:57

Booboostoo your comments echo what I said above - the thought of leaving a child behind in the world with insufficient money to care for them for the rest of their life would be heartbreaking.

My friend is very lucky to have gone into shared accommodation with carers and can go back to her parents for weekend visits, but who knows what the future will hold. Her only sibling lives abroad and I do wonder if they will feel they ought to return in future to help care for her.

(I have another friend with a DS sibling who has moved abroad, partly I believe due to wanting to get away from the stress of the home situation where the parents are the main carers of their sibling. I wonder how common this is amongst brothers and sisters in similar situations....perhaps just a coincidence that I know 2 people who have opted to move away from the family).

OhDoAdmitMrsDeVere Fri 24-Feb-12 21:56:26

I think that the way things are going with the WRB things are going to get even more difficult.

Those with disabled children are in even more fear of what will happen to their children when they are gone. Its getting harder to cope even now.

Given that the Tory party are traditionally anti termination it is cruelly ironic that they may well be pushing more parents into making that decision.

My main thought on this issue is that I am very, very grateful that I have never had to make such a decision.

Theas18 Fri 24-Feb-12 22:03:40

I do think there is encouragement to terminate a possible downs pregnancy.

People with down's do, on average have a short life span and the perinatal/postnatal time can be very stormy. Up to half (maybe not that many, hazy recall!!) have heart defects and bowel problems are commoner too.

I know people with Down's of a variety of ages, including a paralypian swimmer, who's mother thought could never live independently and reluctantly put A into a group home in A's late 20s (A is not the correct initial either!) . Support was gradually withdrawn at the home with much angst on mum's part. However I nearly cried with mum when she told me A got the bus into town and took Mum for a coffee and cake with money earned from a cleaning job. It was "like a normal person would treat their mum" and she never thought it could be possible!

Your friend will need support what ever the outcome and maybe a "cool head" to look round test results. For instance amniocentesis used to be recommended at my local hospital (when I had my kids) for a risk of 1 in 250. Now I wouldn't bet much money on a 1 in250 outcome, and 249 or the 250 babies will not have Down's! (and amino has a 1 in 100 risk of miscarriage too- many more chromosomally normal babies die because of that than abnormal babies found!). It's a statistical minefield.

Theas18 Fri 24-Feb-12 22:05:29

Also remember "low risk" pregnancies may still have Down's......

A risk of 1 in 1000 or what ever doesn't mean you WONT be that 1....

2old2beamum Fri 24-Feb-12 22:14:51

Booboostoo I can see your point, however what would you do if your DC born no problems had a devastating infection or involved in a horrific accident and was rendered severely disabled ----kill them I am sure you wouldn't

Jux Fri 24-Feb-12 22:15:54

I have a relative with DS. He's in his late 40s now. When he was born, life expectancy was much lower for people with DS but medical science has moved on in leaps and bounds, and I think that generally life expectancy is now about the same as anyone else.

He was a gentle, kind and affectionate child and now he's a gentle, humorous and very kind man; definitely worth having him in our lives.

allthequeensmen Fri 24-Feb-12 22:19:35

Its basically state-sponsored eugenics.

Watch this video, try to imagine none of these people have speech difficulties and then tell me these humans were only worthy of abortion www.youtube.com/watch?v=gLpKy5I7whw

Oh and my brother has DS, no health problems here either (though a severe learning disability). I can't even begin to tell you what he has brought to my life, its a love deeper than any other. Everything I am I am because of him.

2old2beamum Fri 24-Feb-12 22:22:27

Jux YAY YAY X

Sevenfold Fri 24-Feb-12 22:26:27

Theas18 good point.
I had a low risk pregnancy, twas a doddle
so was the birth, nhs cocked up, I now have a severely disabled dd.

learningtofly Fri 24-Feb-12 23:13:02

I have written several posts to this thread, all of which I have deleted because I can't articulate well how I feel.

If you had asked me exactly this time last year my posts would have been different. But life throws you curved balls at strange times and I found myself in a position I never thought I would. With. decisions to make that I never thought I could.

My situation was different, bewildering even, but then I made the best decision I could at the time. There are pros and cons against it and I can't condone anyone who takes the time and effort we did to look at it from all angles and hope for Tue best.

Op I wish you all the best for supporting your friend

feelinghappynow Sat 25-Feb-12 07:45:32

learningtofly sounds just like me

Anyway - as I said early on, there are different scenarios that people face..

Would I terminate if i had an unborn child with DS, who would be able to live for years, all be it with some health issues and medical treatment - No way!

Would I terminate if I had an unborn child with DS who was unlikely to last the pregnancy nevermind birth... - Yes!

It's not the disability in question for me, it is the severity of it.

We did for chromasome problems and other complications after 20 weeks - i couldn't face watching my tummy expand knowing my child was never coming home, and waiting for the day of the stillbirth to arrive, of our baby to be born and spend time in NICU waiting to die. I couldn't face questions from well meaning friends, aquaintances and strangers about whether i had decorated the nursery, bought my baby items etc....no point as baby is not coming home. I would have been a psychological mess trying to run a family and house day to day while waiting months for the inevitable. This is not something I had ever comtemplated in my life before having children when pondering the abortion issuse.....but it's a fine thing to 'ponder' when it's not happening to you.

Many couples face what we did, and carry on the pg. Hats off to them - wish I had their strength....

feelinghappynow Sat 25-Feb-12 07:46:59

learning I don't know your situation, and you could well have done the opposite to us, but the 'curve ball' is the same...

FanjoForTheMammaries Sat 25-Feb-12 07:54:38

That's my DD screwed then in 40 years as we don't even have another child to look after her (or move abroad to avoid it hmm the milk of human kindness)

Shame her chromosomal deletion couldn't have been tested for antenatally.

Actually, no, because she is beautiful and I love her to bits, she is a human being like any other and not some political/ethical dilemma, or a burden.

feelinghappynow Sat 25-Feb-12 07:58:34

And I'm sure I would have loved my child, had they been well enough to suvive the pregnancy - thanks fanjo!

FanjoForTheMammaries Sat 25-Feb-12 08:02:20

Well clearly I didn't mean a child incompatible with life as my DD is lave, my post was not directed at you, but others saying they would terminate as the child would have noone to care for it, as I said.

So no need for the passive aggressive 'thanks' directed at me hmm

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