DH would abort but I wouldn't........help!

[Bloo]

My DH really took me by surprise - he was asking at what stage we take all the tests for DS etc etc. I said that we should only have them if we would potentially act on the results as they come with some risk. to cut a long story short, DH said he would want to abort if the baby had DS. I am mortified. Has anyone else been in this situation>

Well said eidsvold
I am delighted that my taxes etc contribute towards assisting families with SN children to care for. I wish a load more of my taxes were diverted to this cause instead of eg funding our presence in Iraq. I'd much rather pay for additional SALT, Teaching Assistant and respite provision than waging war or shoring up Tony's cronies' businesses, thanks.
I believe in an inclusive society where everyone is valued for what they can contribute, trifle. I have no personal experience of SN or living with disabilities but I still find your POV morally bankrupt and really shocking on this thread.
Good luck with whatever you decide bloo. As others have said, men are often more reluctant to entertain the possibility of a SN child and more able to see invasive antenatal testing "objectively".

Well said Eidsvold!!! Good on ya!

sorry to go off on a tangent on your thread Bloo - I think for men it is a little easier to be somewhat removed after all they are not physically carrying the baby. I guess you need to decide what is best for you in your circumstances... I remember when we found out about my dd1's heart defect or basically that she ahd a heart defect and dh adn I talked about it - I can clearly remember saying I knew he wanted that baby too but if he didn't then he needed to consider our future as I really wanted the baby and I felt the baby deserved to be born..... Luckily he felt the same way as I did..... and we now have two gorgeous dds - the eldest of whom has down syndrome and I for one cannot imagine life without her... and she is a real daddy's girl.... they adore each other.

I guess it is also easy to make decisions in isolation - in that you can say yes he would abort a baby if it had down syndrome which is easy to say when you are not facing that very real decision. Though for us - never was a decision.... dd1 was being born.

In the end though - usually as the mother you are the primary carer - you have to consider that too.

I couldn't say it anywhere near as eloquently as other posters esp Eidsvold, but I just wanted to add that I have just spent the most lovely morning (aided by some fabby weather) at a park/playground and cafe ALL run by pple with special needs. The food is honestly fantastic, much better than a lot of places, clean, friendly fast - just lovely in fact. This was a dump of a site a few years ago and all that done by pple who you doubt, Trifle, should be allowed to have a right to live. Just a daft example, but I think it highlights why your argument is so very wrong in many ways Trifle.

I didn't have any tests when I was pregnant with either of my girls for the very reasons stated by FioFio.

I didn't bother having the initial blood tests to see if I was 'at risk' as I wasn't going to have an amnio so what was the point of worrying for 9 months over something I couldn't do anything about?

I loved having my scans but tbh I think all this testing can cause more problems than its worth.

And if I had a child with Downs, well you would just have to cope.

And also, if, god forbid, you had all the tests and they came out clear and then went on to have a difficult delivery, you could have a disabled child. Or what if your child was in an accident? Non of us can prepare for everything that life throws at us.

And I can't think of anything polite to say on Trifle's posts so shall remain sthum.

very well said eidsvold.

I didn't have any of the tests when I was pregnant. They can pick up so few things anyway I just didn;'t see the point.

Well said Eidsvold. Tbh though I think that attitudes such as the one Trifle has shown are often born out of ignorance. I imagine that Trifle has maybe never had any positive experiences with people with disability of any kind? I think it’s sad in this day and age of equal opportunities that people can still be so ignorant. It’s the kind of attitude I would have expected from the 1950s. And yet some people just don’t have a clue. I remember well one day in Marks & spencer in Cardiff, the shop assistant who helped me was extremely patronising, and asked when I was buying something “so however do you manage to cook?” to which I replied that I was actually a very good cook and cooked everything from scratch and never from jars, to which she responded “and does the dog help you with that at all?” I had to be very restrained not to laugh at her.

I remember shopping on day and a man with DS came over cooing over dd1 and making her giggle and the person who was with him came rushing over with a worried look and then said 'oh, you don't mind?'. Which made me a bit as she must have had some bad reactions before for her to say that.

I´m horrified by some of the views expressed here.

I´ve had a great deal of contact with people with special needs and have folk with SNs within my own family. I think many make a huge contribution to the community in which they live and touch the lives of so many people in a positive way. Their carers are often also an inspiration to many.

As a teacher, I have seen less intelligence in so called "normal" children than there is in some children with Downs. I wonder where some of you would draw the line between " normal" and "special-and-too-expensive-to-keep".

I can't believe that comment about the dog wannabe!!

Bloo, I have tended to avoid participating in too many discussions about antenatal testing, as I terminated a pregnancy last year, and realise this is not a decision that everyone would agree with. However, I just wanted to say to you, that you just don't know what is around the corner, as others have said, so in a sense it is not worth spending too much time being anxious about 'what ifs'. Last year, DH and had similar discussions about DS before our scan, and I had said I would not be able to terminate a pregnany for this reason. We hadn't even considered anything else that might crop up because there seems to be so much focus on Down Syndrome. In our case, unfortunately, our baby was diagnosed with Trisomy 13 at our 12 week scan, which is a lethal chromosonal abnormality, and we took the difficult decision to terminate.

Most of the women I am in contact with, who have similar experiences to me, also thought they would never terminate, also probably went to their scans preoccupied with DS, not aware of the myriad other problems that can occur. Only a small number of people that use the support email group I am a member of, have ended a pregnancy for Down Syndrome.

I'm not saying this to scare you-by far the vast majority of pregnancies are 'normal'. I just think maybe you should try not to focus too much on what might be but probably isn't, (if that makes sense). We spend so much time worrying about things outside our control.

Also as to whether they offer you CVS, amnio etc I am not sure that it is clear cut all the time just because of age, history etc. It was not suggested to my friend who will be 40 when she has her baby in June that she have a CVS. I will always officially be offered invasive testing because of our history, but in my current pregnancy the consultant did not advise CVS (because of good nuchal results.)Personally, if I can possibly avoid them, I will not have any invasive tests in this pregnancy.

Sorry for the essay-hope everything works out well for you.

tf tbh I think you're being a little harsh. The only poster on here who has displayed a very ignorant attitude was trifle, yes some have expressed that they would abort a baby in the event it was diagnosed with sn but most have said that it's a personal choice and that they wouldn't say that everyone should take the same view. As people, we are all different, and we all have different coping threshholds, some people just feel that they wouldn't be able to cope with a child with a severe disability, for those who have children with sn this is potentially a hard concept to grasp, but imo it must take tremendous courage to admit that you couldn't cope with a child with special needs and to take the decision to terminate a pregnancy on that basis. I would imagine that most such pregnancies are planned and therefore the decision to terminate a pregnancy following the diagnosis of a genetic condition is not taken lightly.

MM I'm sure the dog would happily have done the taste testing for me :O

DH and I were (are) in a similiar situation but in reverse to yours Bloo (IYSWIM!). I wanted every test under the sun as I would definitely terminate if chromosomal abnormalities were present, but DH was very, very unsure. At the end of the day, he said it was my body and, as I would be doing the bulk of parenting, ultimately my decision. But (especially the first time round) we spent most of the first trimester discussing what we should do. I really wanted the decision to be one we both arrived at; I was terrified that we would potentially have a 'marriage-wrecking' situation.

We both hate the amnios, that 2 week period of uncertainty - will there be a miscarriage? Have I done the right thing? But at my age the risk of abnormalities is higher than the risk of miscarriage so it's never a decision I regret.

I think, as MNers say all the time, if you'll never abort then there's probably no point in the tests. My OB said the 20 week scan is pretty reliable at picking up problems anyway ('forewarned is forearmed' apparently).

Discuss, discuss, discuss and both try to understand each other's view - FGS don't sweep it under the carpet

Have been at work hence absence. An example of what I was trying to say - my friend's 3 year old nephew drowned last year. A totally devastating accident and one they will never get over. When the child was taken to hospital he was put on a life support machine and told that should he recover he would be nothing more than a vegetable. Bad choice of word I know but that is the harsh reality of what they had to accept. They made the completely selfless decision to turn the machine off as they felt the prospect of looking after a child who would grow to a full blown adult but never be able to walk, talk, was blind, deaf, unable to feed themselves or basically do anything independently would be detrimental to them and the rest of their family. They are glad they made that decision as they have wonderful memories of a happy child who was able to live life to the full, not a child confined to a wheelchair with no concept of anything that life offers. They know it would have been a selfish decision to have continued his life and I applaud their courage and honesty in the decision they made.

Trifle - please tell me you are not equating the quality of life for a person with Down's Syndrome with a person in a persistant vegetative state.

Just for the record, I fully accept some families will make the decision to go for a termination. Each person can only do what they think is right for them.

My main point here was that people with SN can and do make an important contribution to any community. They are not just sucking up resources, which is what Trifle suggested.

Trifle I think though that there is a vast difference between having a child with absolutely no quality of life such as the one that you described and one that is born with special needs such as Downs Syndrome. I have limited knowledge of Downs, but I'm sure that Eidsvold and others would tell you that children/adults with Downs are perfectly able to walk, talk, see, hear, feed themselves and in some instances even live independent lives. You can't lump all disability into one category because it just isn't that simple. I imagine that most on here wouldn't want their children, or any other members of their family to be allowed to live in a permanent vegetative state and most likely would take the same decision as your friend, although I'm not sure most would do it because they felt that it would "be bad for them and the rest of their family" but would do it in the best interests of their child.

i wouldnt even worry about it till you have the test results.

Beckybrastraps - no I'm not, perhaps a wrong example. Like others have said, special needs covers a broad spectrum. Ok, let me give a different example. A friend of mine has a sister who is severely disabled and is now aged 50 but has a mental age of 18 months. His parents, now in their 70's, have had to look after her all their life as the help available was and still is extremely limited. He says his childhood was blighted by having a sister with such severe needs. Simple pleasures that children take for granted such as a trip to the park, the seaside, kicking a football round were impossible as it required the effort of both his parents to look after his sister. Because her needs are so severe she cannot be allowed out into social situations nor left with anyone so her parents have not been out together alone for 50 years, not even to the pub for a drink, a meal, a holiday, absolutely nothing. The sheer effort in having to look after her has taken its toll on their mental welfare. Tests 50 years ago to detect such abnormalities were not available. They are now so people can be better informed which I think is a good thing as I dont agree that ignorance is bliss. My friend feels despair at the life his parents have had to lead. It has been neither fulfilling, fun nor enjoyable but a daily struggle simply to cope.

But you can surely see that for every extreme example you give, there is another more positive one to counter it. There are plenty of examples on this thread alone. And as has been pointed out, you cannot tell how severely a person will be affected just by seeing, for example, an extra chromosome in a prenatal test. I think I understand the point you are trying to make but either you are just very bad at expressing yourself or you are basing your arguments on a few anecdotes which completely undermines their validity.

Trifle, I was brought up in circumstances similar to that of your friend and we never resented the limitations my brother´s disability put upon us all as a family. Since my brother died, having lived a very long life too, he has been very much missed. My parents and the whole (very large) family only ever saw him as a blessing and welcome addition to the family.

I have to point out to you all that respite care is possible when you are living in such circumstances so you do not have to be completely on your own with such a huge responsibility.

and you are only giving negatives, there must be positives to having a disabled sibling? I can think of tolerance for one.

A lot of people say that siblings of children with SN grow up to be better adjusted etc because they have had a wider experience of life.

My son sounds at a similar level of functioning as the 50 year old described, he may be a little higher functioning. Anyway we can;'t do trips to the park etc, so we've badgered SS and got help (not easy I know and difficult when SS didn't exist). The children do now all go out together. It involves extra work sorting out care issues and lots of time but can be done. My son's condition was not detectable antenatally (if indeed it existed antenatally). I think day to day life can be difficult, but its not a struggle to survive, and I don't think my other children see it in that way.

Charlotte Moore's book ends in a lovely way. She talks about Jake (NT but with 2 autistic brothers- neither is likely to lve independently) He was just learning about death. and she says

"he only began to cheer up when he remembered someone had told him about the theory of reincarnation. 'Mum, he gasped between sobs 'please tell God that when I come back ...I want exactly the same brothers'.

Unfortunately I have discovered that lots of people with no experience of disability think that those who are disabled are a little bit less than human. I think you fall into that trap Trifle.