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.

I know, I know. I shouldn't read the pregnancy threads. They don't concern me. And these people have a right to seek out information. but still.....

{{{}}}}

the only testing i had with dd3 was my blood work (i am rh-neg and get gestional diabetes), and fetal cardiac scans (dh had dilated cardiomyopathy), mainly due to hearing about thomcats dd1 and how lovely she is.

I feel like this - I haven't a child with DS, so I can't know anything but a corner of how you feel, I don't think.

You aren't alone. There are many posters on SN who feel similar (and a lot who don't have any real reason to post here, but lurk in case we can help at all sometimes).

No, I know where you are coming from. Life never gives a 100% guarantee to anyone against illness/disability.

I have a dd with a deletion on chromosome 5, caused many problems and also a ds with possible ASD,i do know how you feel.

Thank you. I'm aware of how intolerant I sound. I'm definately pro-choice, although because I personally decided against amnio after being given a test result of 1 in 90 for Downs, many doctors treated me as a pro-lifer. I absolutely believe in an individual's right to choose.
But now I have my girl I feel I've entered a different world. Full of people like you lot on this board who know what its like to have life throw a curve ball, and full of people like the staff at my girls special school who accept her for who she is.
And people whose minds are full of testing, testing, don't get it.

I don't think it's intolerant. The women who post on the pg boards are, often, not thinking through the full implications of testing. I know when I was pg with DS1, I had full blood tests, my risk came back low, I thought "good" and carried on.

Before I had DS2, I thought more about it, wondered what I'd do if the blood tests came back with a high risk for something, figured I'd carry on anyway and would be very unlikely to have a CVS or amnio, so didn't have the tests.

But if I'd thought about it more deeply before I had DS1, maybe I wouldn't have had any tests with him. Who knows?

Exactly hunker. I too had all the blood tests unthinking when pg with DD1 and DD2. But the assumption that its all so bad that termination is the only option is sometimes perpetuated, even by medical staff. And as I said earlier, many many problems wouldn't show through testing.

Yep, I think sometimes the tests lull people into a false sense of security - I had a really low risk result with DS1, but it was a 1 in X chance still, not a "there's no chance" result - and, as you say, they don't test for SO many things that can potentially make your child's life harder than the majority.

the thing is, they dont really talk you through al lthe tests at your appointments here. i didnt have them with dd1 as felt i was low risk (and am mild;y needle-phobic). with dd2 i had my ante-natel appointment at exactly the right time for a blood test for DS (cant for the life of me remember what it was called), and then spent 2 weeks worrying about the result. i had no idea what i would do if it had come back as high risk.

between dd2 and having dd3, i had an inkling soemthign wasnt quite 'right' with dd2. she is a tad quirky, and in early years lots of people mentioned autism/ADHD when talking about dd2, and even though she is still with no-dx, i think going through all those assessment with dd2 and worrying also affected the idea of ante-natal testing by the time i was carrying dd3. as well as hearing about lovely lottie. plus i have a neice and nephew with CP, and my friends ds (personalclown on here) has autism.

I had testing done when pregnant with Ds1 but refused all testing with DD1,DD2 and Ds2. Not sure why, but by the time I was pregnant with Dd2, Ds1 had been diagnosed with CP and DD1 was going through testing for CP, I felt that I could take whatever was throw at me, also I felt that if I had terminated a pregnancy for disabilities it would have said to Ds1 and Dd1 that I didn't want them for them IYKWIM

I'm an older mum & some people were surprised that I made the decision not to have any tests, I had no qualms in telling them the reason I didn't was because I knew I would love my baby no matter what and could never have made the decision to terminate if something had shown up. I have also had 2 mc and because there is a slight chance of mc with amnio I couldn't risk it. My DH feels exactly the same way as me, children are special gifts.

There was a thread on this before. Many people on here felt the same way.

I feel the same, yet none of my kids have sn. well, ds2 was diagnosed a couple of weeks ago with ADHD (dunno if that counts) so we're at the very start of finding out all about it. And if ds3 hasn't go the same (but worse) I'll eat my hat! But I've never had a complaint from school about him. He's great, clever and funny, and like probably every other parent out there I love him for who he is, 'warts and all'.

And as you said in OP, the things they can test for are a drop in the ocean to the possibilites they can't test for. Nor is there a crystal ball to say what will happen in the future, even if the baby in utero is NT (is that the right phrase?) My uncle was, until delivery 'normal', botched forceps delivery, brain damaged. What's my grandma supposed to do then? Terminate at delivery? Or kids that get illness eg meningitus and suffer damage as a result?

This goal of a perfect baby upsets me too. dd's cerebral palsy was caused by lack of oxygen at birth but sometimes its the complacency, the sort of 'I've had a test and my baby will be perfect' that makes me cross.
Its hard to explain but terminating a disabled baby makes me feel that society doesn't value the disabled and would terminate me and dd if it could.
Obviously I'd never say anything to a pregnany woman or freak her out but I do wish that poeple met disabled kids so they could make informed decisions and that testing didn't automatically lead to termination or the expectation of termination because its disabled.

I'm still horrified that a disabled baby can be terminated up to 40 weeks. How is that allowed?
Do they actually kill the baby? Because at 40 weeks, or anything after about 30, that baby is going to be born alive.
I feel sick thinking about it.

Yes I agree nmc. 'Lifestyle' terminations don't bother me at all weirdly. I guess it is what's being left unsaid about the value they place on ds1's life that I find difficult. I think it's more complicated than that though. If someone is terminating for something hideous that will leave the child in pain then I don't have the same reaction as someone who is terminating because they 'couldn't cope with a disabled child'. BUt even that isn't always straightforward.

Perhaps the problem is with the language and style of language used on the threads, which often seems to not value children with disabilities. Or to view that as something that only happens to other. I have met plenty of people who have treated ds1 as little more than a vegetable and I think it's that sentiment that riles me rather than any decision.

I think they stop the heart before delivering in very late termination.

i was told i could be having a baby with ds and needed a amio, i refussed because as far ias i was concerned it was my baby and i would love no matter what to be honest all i was thinking was how loving ds babys are, but i didnt in the end infact her illness now is worse

the thing that gets me is, I could have had all the tests in the world. but unless they can find one that see's into the future they wouldn't have been able to tell me she would be disabled as it happened at birth.
so people get all het up testing and worrying then wam bam a mistake occurs and you end up with a disabled baby. makes me wonder what they would do then .....ask for a refund.

well you all know how I feel about it

I get cross that people ( here and in RL) think that nuchal translucency screening is just for down syndrome when in fact - as I learned doing some reading - that it can indicate a number of conditions - one of which can be heart conditions.

I get sick of being made to feel like some martyr or right to life nutter because I chose to have dd1.

I get so cross when I read the messages as if down syndrome is the end of the world and god forbid 'their' baby has anything like that.

just makes me so

Right up there with people who blindly take all sorts of antenatal tests without checking what they are all about.

I had a friend have a nuchal fold scan just because it was in the list of possible antenatal tests - when I asked her why she was having it, what she thought it indicated and what she would do if she was given a high chance - she had no answers.

Another time I had a hospital midwife in the UK express shock when I said no to a triple test - even telling me I should not be put off by the fact that the triple test is only 48% accurate!!!!!

okay [breathe] rant over.

is it just me - or do lots of woman just have antenatal tests cause it is expected of them without thinking about what would happen if the news was not what they expect?

Am I just weird or distrusting that I go away and research stuff as much as I can before I make a decision regarding my health care or the dd's? Dh thinks I am in the minority - that a lot of people just accept what they are told without looking for further information or questioning their doc further.

Something i've been very aware of, being 8 months PG at the moment with 2 disabled kiddies! We took the decision to refuse tests above the level of scans (we'd have wanted to know about anencephaly for example which can usually be picked up on a scan) and don't regret it one bit, becasue well- the chances of this baby having ASD, dyslexia (even NT ds2 has dyslexia), SLD or whatever are HIGH!

And choosing to screen out ASD's- even if it were possible- that would be like rejecting the babies I already have.

Any other disability we can cope with, becasue well, once an SN family always an SN family.

Don't have too much of an issue with those who do test- just people like my Sister who say things like 'don't want one of them' about SN kids while I am there! I will respect their decisions happily, if they'll repsect my family

I don't think it's fair to criticise pregnant women for making their own choices about their own bodies/babies. Especially first timers who probably don't have a clue about the implications of testing, or the likelihood of conditions that won't show up on tests. I can see that if you are the mother of a child with SN it might hurt to see someone saying 'ooh, I could never have a child with X' but that's not their fault.

FWIW I wanted the tests because my pregnancy was higher risk. Luckily nuchal results were good (although obviously that doesn't mean your baby won't be the 1 in 900 or whatever) so I didn't have to consider amnio. 20 week anomaly scan and later heart scan were the crucial ones. Thank heavens they were OK so I didn't have to think about what might happen next. But if ds had had heart defects, at least we would have been prepared and the docs would have been geared up to assess and look at a treatment options.

unfortunately peachy - the respect does not seem to be reciprocated. I do accept that each person has to make the right decision for themselves at the time BUT to me it seems the decisions are often made out of fear and ignorance rather than from a truly informed position. BUT that is just my limited experience of the world of antenatal testing.