Ignorant quetion, and not sure how to put this tactfully, but why do people not want to have a baby with DS?

[LesAnimaux]

I don't want to offend, or be flamed, but I am curious.

I've seen several threads where posters have terminated a pregnancy when they have found out their baby has Down Syndrome, and then gone on to ttc a "normal" baby.

Now, I don't personally know any one with DS or any parents of children with DS, so I genuinely don't know the difficulties they face. Is life with downs syndrome really so bad? Or is it the thought of a child growing into an adult with SN and having no one to care for them when the parents are no longer capable?

Out of all the things I worried about when pregnant, downs syndrome wasn't one of them.

Cheerfulyank thank you for your kind words. I was not trying to guilt anyone. I only try and give a perspective from the other side.

I understand the original OP was in reference to DS and of course this is the situation most people were answering. I of course understand people have the right to disagree with termination I just try and show that it is not always done from a point of view of not wanting a child but from a position of alleviating suffering.

Yes, definitely. I hope you find peace knowing that you spared your little girl pain.

Having recently lost our daughter (stillbirth) I can say I would not terminate for ds, but then I've always held that view. Nothing in my life has been as hard as the past few months since we lost Scarlett and I've a lot of bad things to go through as it is.

Fwiw goindownhill I think you made an incredibly brave decision and I wouldn't liken your situation with that of ds, totally different imo.

'If they could test for autism in the womb, I'm sure a lot of people would terminate. However I was watching a physics prog on bbc4 the other day which described a Man who made huge advances in theoretical physics. By the description of his early life he was glaringly autistic.

The world needs variation, not perfection.
'

It's unlikey to happen as a test anyway- we now talk interms of autisms (multiple causes) as oppsed to autism when discussing aetiology.

Hugely agree about variation.

The person who included intellectual in their criteria for not continuing a pregnancy affected by disability- why? I know many intellectuals I would place on the spectrum, to varying degrees (think Temple Grandin for a start, then my Aunt who ahs a first from LSE in Economics and two kids with asd- both studying at uni- one with support, chemistr and one doing medicine).
I am not sure I am dim; not exactly yer bog standard intellectual perhaps but doing well at post grad, was asked to consider Phd but too many caring responsibilities atm.

Selfishness OTOH- yes, probably the one characterisitc that makes caring a bad choice; in extreme amounts anyhow.

goingdownhill- hugs. I am sorry for your loss and I hope life brings you happiness soon. Mrs Devere- heck we know each other anyway but

With my last DD I came back with appalling "odds" for Downs. I was an older mother etc.

I had about a week/10 days before the amnio to think about the implications.

My main concern was not the syndrome, but the implications for the child's life when I was "gone".

A child is for life; but with "normal" children there is an expectation for a fully independent life in the normal course of events when the Parents' die.

There is not such certaintity with a child with Downs. Ensuring care should the Parents decease the child is a massive concern.

I didn't have the amnio as I thought it irrelevent. I was bonded to my baby; and knowing one way or the other would not have changed what I felt.

At the same time. I went through a massive overhaul of fiscal and practical arrangements; and found that I was sadly lacking in arrangements for my extant children; should I have died; never mind a further Child with additional needs. It stuck a rocket up my arse.

In my NCT group was a midwife, (she enrolled for the sake of her husband who was a plumber; and she told no-one that she was a midwife until our course finished) who whilst much younger, had similar initial results to mine.
She had the amnio and then a "Nuschal scan"; (sorry it was new/cutting edge at the time and it's an age since I've had a baby, so it might be the wrong "name" for the procedure) She then aborted the child.
She was pregnant again within about 5/6 weeks (not sure) but rejoined the group and the next one by account.

Her grief was very cruel; she rang me often. She continously asked me why/how I could carry a potentially "deformed" baby. I couldn't answer her; I just let her rant.It distressed me greatly. I was made to feel like the village idiot at NCT when this came "out". I even overheard one member saying "Jemima had a long labour because she was too scared to see what she might give birth to"

I was satisfied and happy with my choice once I had addressed the practicalities

My daughter was born without Down's. I am entirely grateful that I didn't take the options that were offered to me (at the time).

DS has a medical condition which we could have terminated for (not DS)- except he was diagnosed at birth.

I always struggle with these scenarios as there are two sides - how the parents cope and the quality of life for the child.

Personally my son has endured multiple surgeries and more hospital stays than I can count ( I lost track after the 23rd visit before he was 2) and honestly it's heartbreaking. My son has been put through so much and he is now of an age of understanding so he knows we have to put him through this.

It's not about DS specifically but all disabilities - I had an option to test with DD and decided that I couldn't bring another life into the world knowing it would be faced with pain and suffering, which is different to if something happens after the child is born.

The problem with DS is that the spectrum of suffering is wide ranging and what one family would deem easy, another would struggle with. So it is always more difficult to fully know each situation.

Having said that I still wrestle with this, as despite all my sons suffering he is able to live a good life, adores Dr Who and has a mutitude of friends who adore him. I couldn't and wouldn't want to imagine life without him. I just am worn down by the guilt of his illness.

Jemima your treatment was appalling; whilst i get that other woman had grief to deal with, I hope youn spoke to the NCT people and her manager (given she will ahve been asked to handle cases where baby was hr or guaranteed to be disabled).

I had ds4 knwoing that some people (inexact science) would give us odds of 80% on him having ASD. No wonderful stats beating ehre: seems he certainly has some AN, the nature of which will emerge as he grows. I can't imagine how hard it would have been dealing with her as a MW.

Cheese, I am so sorry for the loss of your daughter. It is a truly terrible for thing for you to have to go through. I know that words are useless. I always remember your daughter Scarlett as she and Alexandra share the same middle name. Sending you lots of love xx

Honestly? The only thing that really worried me about the possibility of having a child with DS in my last two pgs (40 & 43) was the higher risk of leukemia.

The thought of going through that again was too much to bear. But It was not enough to make me have the tests.

I find it difficult when people are very understanding re termination but only if that pregnancy would result in a disabled child.
My judgement is only ever for our society not for individuals and I would support any of my friends and family if they had to go through this. They would never know how I felt, I wouldnt discuss it with them. Infact my closest relative has been through this and all I can feel for her is sympathy and love.

I adopted a child that I knew had a significant risk of disability. He was 8 weeks old when I met him we had no idea how affected he would be or if at all. He is somewhere in the middle. He didnt have cerebral palsy but he has got ASD (very interesting about the discription 'autisms' Sancti) LDs and various bit and pieces.

How could I then go on to terminate any further biological children?

This is all personal. Its very complicated because my life has been very complicated lately.

I do not think people take these decisions lightly. I cannot imagine they are easy or simple.

I wonder if changed attitudes to disability [in wider society], particularly those affecting cognitive ability, terminations for DS would be so high?

There are probably all sorts of reasons, so best not to speculate unless you are faced with that decision yurself, I'd say.

i know that for me, I may well have terminated my first pregnancy if I'd have thought the baby would have DS - out of sheer terror and yes, probably out of some sort of misguided longing for a 'perfect' baby.

Now, after having had two miscarriages and two children - one with autism (which there is no antenatal test for) and one NT child - I would still feel very torn. I know I would love and do my very best to care for any child of mine, whatever their issues. but I also know how much hard work is involved in looking after a child with SN, and I know that, realistically, caring fo a DS child is a lifetime commitment that would impact massively on my existing family.

hard, hard decision.

i have terminated two pregnancies. the first was for a hypoplastic right heart and was at 6 months. The second was for downs syndrome at 13 weeks. The baby with downs syndrome also had a cystic hygroma (also referred to by mw as hydrops). Indications were that the baby was unlikely to be born alive, although we spent a lot of time researching life with downs syndrome, the overriding reason for terminating that pregnancy was my great fear of losing a baby late in pregnancy as I had found it very traumatic. In my view the earlier it happens the less painful for all.

for what it's worth my sister was hit by a car as a child and lost around 95% of her brain. she lived for 9 months following the accident. If that happened to one of my children I would do as my parents did and ensure her life was as stimulating as it could be and plan financially for her potential future. As I would if I gave birth to a child with any syndrome or disability. I just couldn't personally choose to knowingly go through that.

My choice was informed by my life experience, I don't think it's about perfection.

I am sorry manitz. My lovely sister had to make the same decision re cystic hygroma. It was connected to Turner's in her case

goingdownhill Tue 12-Apr-11 08:12:35
" As her mummy I feel it is my job to take on the agony and let her be at peace."

goingdownhill, I'm so sorry you about your experience, your post has made me cry, and the last sentence explained an awful lot to me. Thank you. x

I feel awful for anybody who has terminated a pregnancy, I imagine it must be horrendous, hence my question in the first place. Thank you all for not eating me alive. I really have learned a lot from this thread.

"I am entirely grateful that I didn't take the options that were offered to me (at the time)"

Jemmima, what was offered to you at the time, apart from the amnio which you turned down?

I think the midwife at your nct group would have had a nuchal scan then an amnio, there's no sense in having it the other way round.

Do you know what really gets me, is how some get sympathy and others get nothing!! Sorry having a bad time at the mo and don't disagree with people getting support. However I was remarked upon something I said earlier by someone hinting down syndrome wasn't as bad as say edward syndrome, then out came facts. After saying I have also been through 2 horrendous pregnancies and loosing a baby I get nothing!!

FWIW after having been through the scenario of wanting to keep a baby no matter what and the horrendous way I lost the baby boy with multiple disabilities/problems, then going on to have a son who I had tested antenatally so as not to go through it all again, knowing I would terminate, for them not to pick up on the fact he was down syndrome with major heart implications etc says it all.

I personally would never judge anyone for doing what they feel is right for them, at the end of the day it's only the ones making the decision who has to live with the consequences.

goingdownhill - you're more than welcome

frakyou - that must have come out wrong on my part because i very much agree with your sentiment that in some cases it takes more strength the let a child go

on thw whole though i don't disaprove of abortion for any reason. i beleive every child deserves at the very least to be 100% wanted and accepted by both its parents. any less than that and ethically, a temination is the right option.

i think there is a huge misconception that those who/those who would consider teminating for birth defects are thinking on,y of themselves whereas i'm pretty confident they ar much more likely to do with the quality of life of the child in mind

Devientenigma, did you have an amnio?

I think it's really important for anyone who just has a nuchal scan to realise that it's never conclusive and they could be the one in however many to have a child with one of the chromosonal disorders.

Sorry to hear about your loss.

Devient. I am so sorry you are struggling and having a bad time. I think I can understand in a small way. As I have posted earlier lost our daughter 3 months ago. My DS is on the ASD spectrum though we are still swimming against the tide to find out the exact extent of his problems. I know this is nothing compared with the level of issues your son has. It is exhausting and draining trying to constantly fight for the correct support, education understanding. I can only imagine with what you have said about your son that for you it is a 1000 times harder.

I am sending you a huge hug. I am sorry if you felt ignored on this thread. I think sometimes a lone voice gets lost.

I think I am so pathetic at the moment people respond for fear I will sling myself under or bus.

I wish both you and your son lots of love. x

a bus even doh!

Having worked with children with DS, I now realise that many of them can have happy fulfilled lives. Before working with them I would have had the same, unfounded fears about their lives not being worth living etc...

I actually find many people with DS to be the most happy and content in life, because they just accept it as it is. I am not saying it is easy though, being a parent to a person with moderate learning difficulties must be hard at times.

I think it is a shame that people think that someone's life is not worth living just because they have SN, and that therefore they shouldn't exist. I would not choose to have tests if I were offered them, because I wouldn't terminate anyway.

goingdownhill, sending huge hugs back.

I didn't intend to make the post sound harsh or misleading. My baby boy I lost is coming up to 15, it's just my dd is also coming up to 14, both within a week of each other. I just look at her and think you wouldn't be here if he was etc. My ds with down syndrome is 10 and what really annoys me is how people catagorize disability. Down syndrome being one of the best!! I wouldn't wish my life with my ds on my worst enemy, it's not a bed of roses and as someone has said in a post on another thread...I am in a minority with my sons severity.

Duel, I didn't have an amnio as everything was low risk so no need for further testing.

as missy has just said a parent to a person with moderate learning difficulties................this is not always the case!!
My son does not lead a happy content life!!!

Hi Devient. i think it's difficult to post personals on here as it's so long so individual situations get a bit lost. i was reading 10 pages before I posted so I lost who said what. I'm sorry that you are finding things difficult. i must admit I had previously thought downs syndrome might be the best - not because of the level of need or severity - but because it appears to be high profile and has (I thought) a good support network. It doesn't sound like you are getting much support, i hope you are able to find a way through. xx

missymarmite - i'm sorry but posts like yours frustrate me. maybe you have seen something in your experience with sn but perhaps you haven't seen enough (and even as i type that i realise how wrong it sounds - hard to explian bear with me). working with and being a full time carer of are such poles apart. again this is anecdotal evidence. i have seen plenty of miserable ds people who spend a lot of time in hospital.

yes it is true that some ds people live happy fulfilled lives, yes it is true that the personal sufferring can be considerably less than with other birth defects but that is in no way a guaranntee that this rosy picture will be the outcome of continuing with a ds pregnancy and i dont think its wrong to not want to take that risk.

i will never judge those who terminate for birth defects (or any reason actually but that is not this discussion). i certainly dont judge those who don't - hats off to you as i freely admit its not a job i am willing (in the informed sense) to do.