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.

Feelinghappynow - don't beat yourself up. You acted in love for your family. Nobody could ever think that was wrong. I think you were very brave.

Such a difficult decision, and hopefully your friend will get news so the decision is not necessary. I don't have massive experience with DS but had some good advice from my gp when i first told him i was pg, he said that the scans we have are for detecting problems (not just getting excited over small beany baby) and to prepare some thoughts on what you would do if something came up. He also said that coping with a disability is testing for your relationship as a couple an you should fully consider all aspects.
My aunty and uncle adopted my cousin who has DS and she is absolutely lovely, got on brilliantly (as far as i know) with my other couins, health wise she hads a few problems, heart, and also went progressively more deaf. When they first adopted her, long term prognosis and life span wasn't good, but with evolving medical treatments and better drugs she is still going strong. The saddest part of it all is my aunty and uncle have now passed away, luckily she is living with my auntys widowed ds, but my main consideration if i was in a similar situation, would be what would happen if they were dependent on me and dh for care if they outlived us.

If you can find the 'Born to be different' series on channel 4, there is a gorgeous boy with DS on there. I've been following it since he was a baby, I think he was 10 in the most recent episode.

2old2beamum: Thank you. I will look in to this and may come back to you, thanks. We do have many wonderful memories. Btw, your nickname sounds very sad but from the sound of your post you've done and are all the best bits a mum could do and be, if that makes sense. x

But you could have a baby with no chromosome problems and have a traumatic delivery and the baby could have CP. Your baby could get meningitis with dire consequences (our youngest DS is far far more disabled
than our Down's) I am not being judgemental but it is not the worst thing in the world. Every child has a beauty spot and it is up to us to find it.

feelinghappy, dont beat yourself up. You did what was best for you and your family at that time.

Well said 2old2beamum. I love my disabled dd as much (possibly more) than my other kids. Within her abilities she is treated the same as the others and she reminds me never to end a meeting on an argument as no-one knows what lies around any corner. So each night I make sure to tell her how much I love her in case its the last one.
(she now has a monumental ego of course )

Thanks all...anniversary coming up so it always feels hard at this time of year.

We have a child that would never have been born had we not gone through all of that....so we're very lucky to have DC"2"..

and feelinghappy, I agree with the others, of course you were not wrong, you did what was best.

I would terminate a baby with Down's or any other major complication, because while some lead fairly normal lives, some require a very high degree of care, and I do not want to be a carer. I am not prepared to give up my career and time with my existing children. If I gave birth to a child who had special needs with no forewarning, or, god forbid, something happened to a family member, I would accept the hand fate dealt me and I would care for them the best way I could. But I would never knowingly and willingly put myself in that position if I could avoid it by terminating a pregnancy. Some may call me heartless, but that's how it is.

Down Syndrome, like any other illness can vary in the way it affects babies/children/adults.

There's no real way of knowing if your child is going to be the one with no complications or severe complications and it is that unknown that makes people decide to terminate.

My cousin has Down Syndrome. She's deaf and had a heart op when she was tiny but she's a feisty bubble smiling 20yr old now.

I didn't have the test as I knew I wouldn't have been able to terminate either way. When I declined, you could see the look of shock in the Midwifes face. (I didn't realise the test was so common that I would be seen as weird for not wanting it). But for some the unknown is scary and so I don't for one minute judge anyone who makes the difficult decision to terminate a baby who could have a possibly life limiting illness.

feelinghappynow, please try not to feel you did the wrong thing. Edward's and Patau's syndrome are very very serious condition and children who have those conditions hardly ever even live to term

Making the decision to bear a child who is going to die is a very personal choice and one I decided not to make. I do not regret my decision, although I am sad every day that my son is not here with me.

feelinghappy - so sorry to hear your story. you've gone through such a hard time - all the best with the anniv.

Also Humphrey. Wise words.

Priscilla I turned down the antenatal triple test too and my MW was so mean about me not having it done that she made me cry . I think most people have the tests done, and most of my friends have paid extra (not funded in our area) for the nuchal scan also, so I guess the MW thought I was weird.

My youngest brother now 33 has ds so I find it hard to be objective in this situation am also a Teacher who works with kids with sn. My brother has absolutely no health problems and leads a productive and joyful life.he has only added to all our lives and is far less trouble to my parents than my other 4 brothers!
I do think ds suffers from some bad press and people presume the worst, my parents always say that my brother having ds was sad and they grieved,however my other brothers diagnosis of schizoprenia at 17 and subsequent alcholism drug addiction etc is the great sadness in their lives. None of us have any guarantees.
I do think ds suffers from some bad press

Hi there
we have moved this thread to Ethical Dilemmas
Thanks
M Towers

My sister was born with downs 28 years ago. Unfortunately she passed Nov 2002 and was 18 (she would have been 28 this last Tues)

She did have lots of other heart problems too. I dont know the full extent, but I know she had more than one hole in her heart. During her last years she had a wheelchair as she just didnt have the stamina to walk more than 10 mins. She would always go blue in a bit of cold too :(

In answer to your question about why do people terminate, I dont personally know. I have had tests with all 3 of mine and was always given a low risk, but I always said if the risk was high Id take further tests then decide. I never knew if I would terminate because I think that id rather know even if I was going to keep the child so I could come to terms with it before the birth so when he/she did arrive I was prepared so would hopefully deal with it.

I am aware that I am in very much the minority but I always think its strange when people say they dont want to test as they would keep the baby anyway. Is it not better to be prepared as soon as possible?

I think it is because Down syndrome is one that it is possible to test for.
Once it is detected people are then forced to make a choice.

Down syndrome is such a wide spectrum and I think that parents are often given the worst case scenerio.

I dont judge those who make the incredibly difficult choice to terminate. Everyone must make that decision according to what they think they can cope with.

I am glad that I have never been in that position..

2ombie I am once of those who chose not to test. I had two babies in my 40s so it was automatically assumed that I would want all the tests.
My reasons were that I didnt want to start a process that would lead to more tests and more stress. The intial test can only tell you a risk. In order to be sure you would have to make yet another difficult choice - to go for more invasive tests or not?

Why put yourself through that? You cannot prepare yourself for a having a disabled child anymore than you can prepare yourself for having a child full stop.

Once a baby with Down syndrome is born the referall process kicks in on day one anyway.

smallwhitecat um not quite the same thing though is it?

Caring for my DS2 is very different from caring for my other boys and caring for DD was nothing like caring for the others.

I dont live in a hospital now for a start. I dont spend my days administering pain killers and anti biotics and anti epileptic drugs.

My life does not revolve around clinics and hospitials and appts.

2ombie A bit like MrsDe I chose not to start the process of antenatal screening tests because all the test would give me was an estimate of the chances of there being a problem. To diagnose we would then need to then have a diagnostic test like CVS and amniocentesis which carry a miscarriage risk.

We had a long struggle to get pregnant, with previous losses, so wouldn't risk a pregnancy by doing a CVS or amniocentesis. So because we would not risk the further tests there was no point doing the first set of screening tests.

If there had been problems they would most likely be picked up at the 20 week scan so we'd would still have had some time to prepare.

Well we have choice in this country and some people decide to make that difficult choice.

Others make different chocies and thank goodness we can.

I have a cousin with DS who is now 25yo. His mum is one of my parenting mentors, I often seek her advice.

When I look at the health problems he's had, the worries he's had, the extra worries his close family have, the way he lives, the whole package of what his life has meant for him & others, I find it very very daunting. And depressing. Keep in mind his mum considers him the light of her life, btw, so it's not like his mum is being at all negative about it. The only thing she's bitter about is the way new people react to him in public.

He does not have many of the problems mentioned here (no heart defect, for instance). He has a host of other difficult things going on, though.

I agree there are much much more challenging difficulties that kids can have, though.

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.