Re pregnancy testing - Is it me....

[theheadgirl]

...or does any one else find it hard, when flicking through the threads on pregnancy, to come across someone who is DESPERATE to rule out every possible abnormality, counting statistics at every turn, planning amnios here, cvs there??
I'm normally a live and live sort of person but I find this so hard to come to terms with. As the mother of a child with DS, I know and ascept that there are those who would terminate rather than have a child like her. Their loss, truly. But my DD, as well as having Downs, also has ASD, which can't be tested for. And in my opinion ASD is far more debilitating than DS. I sometimes feel that there are people who expect their child to be nothing but perfect, and who are in for a sad awakening. And if they only knew, that when the "worst" happens, and their child does have a disability - well, actually its not the worst, there are far worse things. They will love their child anyway.
Sorry, this sounds so intolerant of me, I'm not normally like this. But tonight for some reason, I'm upset by it.

You're right Edam except that if you're discussing this with someone then its fairly eprsonal and chances are you know they have a child with SN, so at least poeple can be tactful if nothing else- and often theya ren't (see my post below about Sister).

Personally thats all I ask. Just as I often think 'Hell love, babies with CP get it often during delivery and youc ant test for ASd or know if a car is gonna hit your child ten years down the line'- but wouldn't ever, ever dream of saying it to anyone, no matter how ignorant theya re about my kids or their rights.

We all need to just think a little about others feelings sometimes.

edam I agree with what you are saying. I so remeber what i was like when i was expecting ds(PFB)
I don't think people are critisising just letting of steam about something close to our hearts.

peachy don't forget ponds as well. dd's freind went for a dip in a pond and now has a sever brain injury. you can't test for that.

so don't you think these women are being let down by medical professionals who are not giving them accurate or full information about tests they are having done in order for them to make an informed decision?????

I must be a freak cause even as a first time pregnant mother I wanted to know what everything was about, what tests were for, what would be indicated by the results, and what would happen next after we got the tests results depending on what they showed.

actually re reading that edam - it bloody is their fault - 'oh I could not have a child like that' whilst my child is sitting in front of them or knowing very well that I have a child with sn - so very respectful and tactful

2 shoes - my uncle as a very vibrant, athletic man in his early twenties - went to a party -w as not too drunk but managed to fall down the front stairs to his house - woke up from a coma many months later - he now has a form of cerebral palsy - can happen to anyone.

My experience is that women are being let down by med profs as I imagine rhe pressure I was put under to test and have Amnio for ds3 (which is rather ironic as Amnio doesn't exactly screen for regressive ASD!) would ahve affected many less ecuated / aware women than I.... and I ahd nursed in the field so was in apriveledged position to know what the disabilities really were and how valuable people are as individuals regardless of some DX

BUT people do have a responsibility to find out for themselves what these tests do and don't test for, what teh associated risks are, that (for eg) a child with spina bifida can fit any stage of a wide range of disability levels. If you're competent enough to accept a test sucha s Amnio that carries a risk of miscarriage, you should be able to sit in front of Google or whatever for ten minuteas first.

Yes, I remember this conversation coming up before.

Fwiw, I feel a lot of it is because the general public (and the medical profession, actually) think of disability as a binary state. A baby is either "disabled" or "not disabled" and if you know in advance it would be disabled, well then obviously you couldn't cope because everyone knows that means constant medical care, pain & suffering and a poor quality of life. Yes, testing gives no guarantees but if it did happen to you, your life would be over, so why not try to avoid it?

Reality is that disability is a spectrum so wide that there is far more difference between - say - many children with Downs' and my DD1, than there is between an NT child and a child with Downs'. In fact (I hope I'm not offending by saying this) imo Downs' is "missing the bullet" in a way - except, of course, for coping with how society treats you. Now I understand this, I too am disturbed by the assumptions around testing for this condition.

However the flip side is that those of us who would want to test for and terminate for conditions from a position of knowledge feel unable to post for support on this forum for fear of the reaction from parents of children with less severe conditions. I do find it ironic that we get threads saying "oh how ignorant and insensitive to post long threads about terminating children" without the self-awareness to think that you are posting on the SN forum and that there will be a number of mums here who have been or will be making that choice because they are coping with problems that you are as ignorant about as the mums you are criticising.

Sorry, this comes across as me having a go, which wasn't my intent when I started typing. But it's an incredibly sore subject at the moment.

Thing is r3dh3d, there is a section called bereavement etc that I would never, ever dream of posting other than support on for someone going through that situation- and I often have done. And of course the respect thing comes down to respecting the decision once someone ahs amde it anyhow, my poor Mum had to make it for her 5th child after Rubella- her first 4 died at birth from being premature. Sn though is a forum for the other side of the coin I think, and I sincerely believe that a lot of sadness / fights / offence, whatever could be avoided if people gave a bit more thought to the section they posted in. I'd have no more time for a Sn aprent posting something cruel abbout termination for disability within the beareavement section, than for the reverse.

Pregnancy, for a first timer, is such a huge leap of faith. I didn't know whether I would be able to cope with any child, let alone one with a SN. My biggest fear was getting PND and falling to pieces, even without any extra cahllenges. So far, I've surprised myself.

My way of making decisions is to gather as much information as I posisbly can as I tend to feel that I could find out something after I've made an irrevocable decision that would change it entirely - and then how would I feel - so I have to know everything and I like the 'certainty' of statstics - the way they make it easier to rationalise and live with a decision based on them.

During my pg with DS, following the triple test, I was given a 1:13 chance of him having spina bifida plus about the same chance again on top of abdominal wall defects or anencephaly. I'm very pro-choice, although I've always much more comfortable about early termination for whatever reason that later termination for abnormalities.

I'm sure that, had I known about mn at the time, I would have been just one of those people on the antenatal threads. I'd have looked at the (fairly frequent) SN threads about how tough someone's finding some aspect of caring for their SN child and it would have reinforced my feeling that I would not be up to the job of caring for a child with a disability.

I can only be glad that medical science hasn't yet cottoned on to the fact that the blood test result that I had is also common in babies with eye conditions and that they didn't spot DS's cataracts on the scans I had. If they had, they would have given me some more statistics; over 50% chance of seriuos visual impairment, plus a 50% chance of any one of about 100 rare syndromes, most of which are very challenging.

Given those odds, I would have terminated and I would have felt that it was the right decision. I am unbelievably glad I didn't know. I have changed my point of view about what I would do in the future about a similar decision, but I still don't really know how things could have been different before I had the benefit of hindsight - other than by changing society's views on diabilty fundamentally.

I think it's a huge leap of faith for anyone TBH, Sn can strike any child, and if you've already had it happen once the untouchability soon disappears I can tell you (this baby is high risk of ASD as has 2 /3 siblings with it).

I think it is fairly normal for first time pregnant women to have unrealistic expectations about what can and cannot be screened out in pursuit of a perfect life and a perfect child. They may learn better through life experience or they may go pursuing unrealistic objectives such as being ten years younger or blonder forever and be unable to face up to realities like old age and death.

It could be said to be odd that more and more restraints are placed on pregnant women's lifestyles - eating and drinking etc often with no credible evidence to back it up yet the same women are prepared to have a needle put right through the amniotic sac to obtain DNA for testing. However, not everyone who has testing though goes on to terminate, for some it can be a chance to prepare for the SN.

I always feel a bit iffy about this topic because dd inherited a genetic condition from dh, when we knew that any child that we had would have a 50/50 chance of having it.

There was no way of testing for this particular condition in either of my pregnancies (and even if there was, I wouldn't have had the test anyway). Also, I wouldn't put my children at risk by testing them for anything else.

I try to keep an open mind about other people and their feelings about testing, as they might not feel able to cope... my SIL felt that she couldn't tell me that she was having tests with a view to terminate her pregnancy because she felt that she couldn't cope if her child was disabled (they suspected DS). Baby was OK in the end, and all I hear now is how sodding "perfect" she is. THAT gets on my nerves more than anything else.

I feel quite strongly about terminations on the basis of disability, with the exception of conditions that are incompatible with life. My mum had a termination when I was 7 because she didn?t feel that she wanted another disabled child. No testing was available back then, there was no way of knowing whether another baby would have a disability, no-one else in my family is visually impaired, but she felt she didn?t want to take the risk, so she terminated the pregnancy anyway. To me the message is very clear that had she known about my disability before I was born, I wouldn?t be here today.

But I wonder if there?s a difference between terminating a pregnancy on the basis of disability, and deciding not to have any children because of disability? Because surely to an extent it?s similar, apart from that in one instance a life is ended, but either way the message is clear that disability is still considered an unacceptable part of society, and yet how many parents, if they were told their children would definitely be disabled, would choose not to have children? I know I probably would think very hard about it, even though I would never be able to terminate a pregnancy.

wannaBe, you're right. I know of several adults with the same genetic condition as dh and dd, and most of them will not risk having children because of the high chance of it being passed on. They can be pretty outspoken about it.

A lot of people don't understand why we decided to have children, some clearly think that we are mad. However, we have also got a (slightly) older ds who is OK.

R3 - I am sorry you seem upset, I would hate to think that I was contributing to a climate on MN where you felt you can't get the support you need.

we're going to be having this conversation until disabled poeple and disability are no longer seen as 'bad'.
And that requires a huge shift, both in suport and in perception. Being disabled is not the end of the world which is often how it is viewed - hence all this euthanasia choice for the disabled but not for 'normal' poeple. They get counselling and help but should someone with MS say 'I'm having a tough/in pain day' you get asked about when you'd like assisted suicide!

Of course I can. I struggle with termination anyhow. Its a woman's body but on the other hand its also a baby (for all terminations) so, still wavering, have sort of felt more comfortable with terminations that are very very early but not with those after 12 weeks.

If I became pregnant again I still would refuse all tests. While I wouldn't really want to deal with more disability (not because of disability itself but the lack of support/money/steares etc) I would make the choice to just get on with it. DD's disability of course was untestable for.
I don't want another disabled child for my own sake but would never terminate for that reason.

I would also support a friend (and was in this position recently) who did want to terminate. It caused immense dilemmas for me. She has a severely disabled child (he got CP after meningitis at 10 months old and is profoundly cognitvely impaired too) and couldn't cope with another. So I stood by her through the scans and what have you, and her dilemma about whether she could cope with twins as a single parent or whether it would be better to terminate and I'll stand by her and help her with the wtins when they are born (she decided to keep them)
My thoughts are that the majority of women are not making informed choices. They get on the conveyer belt of booking in/blood test/triple test/amnio/scan with any real information and if they get a 'likelihood' of a problem (and none of these tests are 100%) its straight to termination. No doctor ever says, wow, congratulations, your child is a girl/boy and has 'X condition'. Its always 'OMG,get rid of it of course' and fragile, emotional women are sometimes rushed through to termination with no real counselling or time to consider all the options.
And thats a society thing. Disability is so hideous that its never considered as an option.
So I'm not critising anyone who has had to wrestle with this dilemma up close but critising society who see disabled people as a tragedy.

I hope what I'm trying to say is clear. I'm not very good at putting thoughts into words as I think inpictures/emotions more than words.

I've discussed this with ds1's psychologist because I felt guilty that I found it difficult to be accepting of ds1's as.No it is not the end of the world, but it would be good to have avoided it. The way I feel is that ds1 is fantastic and I would not be without him, but I also feel that already his life has been harder than his nt siblings - his anxiety, fear , loneliness, confusion and distress are a constant feature. I am not judging his worth - of course he is of equal worth with anyone, but I wouldn't choose to have a child with as because a lot of the time life is shit for him in my experience - I think as his mother and with his siblings to compare his experiences too I'm a reasonable judge of that.
I would never abort a child with as even if there was a test for it -once life is made then get on with it( but i think tests are invaluable re being able to prepare and educate oneself),but if there was a preconception test available of eggs/sperm then I'd do it and not have a child with as.
Even if the whole world was accepting and inclusive of ds1 I truely believe he'd feel stressed, different and alienated.
I'm not desperately unhappy for ds1 and we get on with life pretty well, but it is harder and why would i not want to avoid that?
An interesting question for me is am I saying that I would prefer ds1 not to have as - is the as not part of his personality though so he wouldn't be ds1 without it - but I think he would be -he'd just be ds1 with out feeling as stressed about life and therefore he'd have more spaceto enjoy things.
Sorry if this has offended anyone - I am really not denigrating the worth of disabled children - all children/people are equally precious, I just hate the condition my ds1 has to live with - even though it's not in any way as dehabilitating/restrictive as some other disabilities.
Have thought hard about posting this, but it is a discussion forum.

ah r3- haven't read it all - but your sort of situation was meant in my 'but even that isn't that simple' - but I didn't have time to type it all out before work this morning.

I would struggle with 2 ds1's. Although we did end up with ds3 accidentally one reason I felt able to go thro with it was becuase we thought we knew what had triggered ds1 so we felt it was, to an extent avoidable. That said, dh's snip after ds3 was in part because we felt we had gambled enough times iyswim.

I think I find the conversations on the general board weird because it's always about DS- whereas I think every child I've met with DS has been streets ahead of my own son. And I think it's weird to focus so much on a condition just because it can be picked up.

eidsvold, yes, saying 'Oh, I couldn't have a child like that' in front of a child with SN is horrible, clearly. I was thinking more about people posting on MN antenatal threads.

Huge difference between first-time pregnant woman and an actual mother though - now I have ds, I'd find it much trickier to think about the consequences of ante natal testing if I did get pg again. Because he's real, IYKWIM.