HELP!! I'm paralysed with indecision about ante-natal testing.

[rubyone]

Hi,
Can you help me? I just can't make a decision about ante-natal testing. When I had my son, I had the integrated test at the Wolfson Clinic (Nuchal plus blood test at 12 weeks and this then combined with blood tests at 16 weeks to give risk). This went fine and a I had a healthy boy.

This time round (after miscarriages) I've arranged the same (I'm 39) but I just can't face the stress of it all.

It would really help me to hear from people who:

a) went and had a nuchal etc and felt that they would terminate if they found anything was wrong. I'd like to know from them, what was it about having a child with Down syndrome that they feared?

b) had a nuchal etc. but knew they wouldn't progress to CVS/amnio or termination but just did it for reassuarance - did they get reassurance and if not, did they then feel the pressure of the cascade of intervention once they knew something might be wrong? ie, is it really feasible to have a nuchal and leave it at that if it's 'bad' news.

c) decided to have absolutely no tests whatsoever. I've heard of a few on the SN board who had a DS child and were glad they didn't know beforehand. I have a feeling that knowing something was wrong at even 20 weeks makes the rest of the pregnancy hellish with worry. Am I right? But is is responsible to have absolutely no tests at all? And didn't you just worry all your pregnancy that something might just be wrong?

d) There are many positive stories of DS children - but there must be some downsides? Can you tell me what these are? Is it a lot harder than bringing up a non- DS child?

I know that's a lot - but it's a moral minefield!!

Any advice would be very much appreciated. THANKS!

What I keep thinking is, the disabilities these antenatal tests look out for are not things that would benefit from any ante-natal/in utero intervention so (as already observed by rubyone) there is absolutely no benefit to the baby. So why are the medical profession so keen for us to have them and, more to the point (as of course I understand why some women would want them), why are we often made to feel irresponsible for not having them? (big time rhetorical question there...).

Yeah, I?d like to line up all the medical professionals out there and ask them why they think it necessary to rid the world of people with DS?
Seems to me, in my limited expereince, that doctors go on about the risk of Down's and if it turns out that baby will be born with DS then it would seem that a termination is offered.
Doesn't seem right to me.

Message withdrawn

I'm new here, and usually a bit reticent about posting, but this is such an interesting thread and so relevant I think.
I'm 12wks with my 2nd pregnancy. I've had my dating scan, but nuchal fold scans are only available privately here and we didn't really get organised enough to think about having it. Last time with dd, my first scan showed an amniotic band, which none of the preg books covered, but roughly speaking a fibrous band from the outer amniotic sac was pushing through the inner sac. In very extreme cases it can get wrapped round the baby's extremities, limbs etc and can cause an amputation - very very rare. However mostly the bands disappear. I was given no info at all about it, and of course scared myself witless reading up about it on the internet. The point of mentioning this issue was that I decided then that I would definitely not have the blood tests as I didn't want to worry myself further about anything else and also a second scan would show if the problem had worsened, in which case keyhole surgery could have been used to help the problem. Thankfully the band disappeared and everything was fine, but what a lot of worry.
This time around the first scan has been fine and we have decided not to have the blood tests at 16 wks again because we don't feel we would want to take any action anyway. We can only get a 20wk scan if we pay for it,(unless there is a clinical reason for having one) we haven't decided whether to do that yet, half inclined not to bother. My husband feels quite strongly the same as me and this has helped to clarify my feelings. Reading all your posts has helped too!
Its all very abstract just now and perhaps easy to say, but I do think if you have a child with SN,it means that your life will just go down a different path, which would be just as rewarding and interesting as whatever you might have imagined life with children would be like. I mean having children takes you into a whole new world, that you can't truly appreciated beforehand anyway !!
Sorry about the length of this, good luck with your decisions rubyone, I'm sure you'll do what's best for you.

Lots of v interesting posts on here. TC as usual you have me blubbing into my keyboard with joy with your descriptions of Lottie - we must get our two together SOON!

Must say dh and I totally surprised ourselves with this one. When we were ttc, I always assumed we would go for every test there was ((I was aged 35 and on drugs for Crohn's disease that could cause foetal abnormalities). Then when push came to shove on the invasive testing we suddenly decided that (a) we didn't want the risk of miscarriage after ttc for 3 years and (b) there was no point anyway as we wouldn't terminate whatever the result.

We hadn't really talked about it beforehand, it just suddenly came out one day that we both felt the same (having both previously not felt that way!)

HTH rubyone xx

Habbo,
What a great sentiment. We should take it as our motto! Lovely post...

"if you have a child with SN,it means that your life will just go down a different path, which would be just as rewarding and interesting as whatever you might have imagined life with children would be like. I mean having children takes you into a whole new world, that you can't truly appreciated beforehand anyway !! "

TC I agree entirely.Could say a lot more but fear that it will turn into a rant.

rubyone,. I've not read any other posts - sorry no time, just to let you know from my experience -
ds1 had nuchal fold, just becasue it was offered. didn't really think about it.
ditto ds2
ds 3 I was actually asked if I wanted it & explained the next step would be.. and the next would be ... etc, so for the 1st time I actaully sat down & thought about it. I decided in the end I wouldn't go through with an abortion, so didn't have any tests at all. It was no more stressful or worrying 9poosibly a bit more liberating) than having the tests. i'm glad I had no tests & with the next one, if it happens, I will not have any tests then either.

Just my experience. i know everyone's different

sorry, what I mean to say, is, and you seem to be doing this from your q. i guess you need to have a clear idea of outcome in your mind. Would you choose to have an abortion? Under what circumstances? How invasive are you prepared to go, test wise - may healthy babies are miscarried as a result of amnios etc etc. only when you knwo the answers can you decide what, if any you will get. sorry if that sounds obvious. it took me 3 pregnancies to work this out

I would still like to hear from people who have had a nuchal fold scan and then got 'bad' news, and felt railroaded into having invasive tests.

Also, - though I understand people might be reticent in answering this but I ask it in a non-judgemental way - from people who are certain that they would terminate because they don't feel they would be able to bring up a disabled child. Can anyone tell me more about their feelings on this? Have you had particularly bad experiences with disabled children, for example? Please do write about your views if you can. It would help me tremendously. Thanks.

rubyone, I do appreciate your concerns but just wanted to add that what you can tell from a test, whether invasive or not, is not always the whole picture anyway. 'Disabled' is a very big term - for example, a child could be extremely low functioning autistic and very difficult to deal with, but I don't think (and correct awway if I'm wrong!) prenatal testing will pick that up?

I would also guess that there are huge differences in what level of 'disability' you are considering -cleft palate? club foot? Spina Bifida? DS? I don't know that anyone can make a decison in advance of the actual situation they find themselves in, but I do applaud your wish to hear both sides of the coin - those who wouldn't consider terminating and why, and those that did and why.

I also think this is a decision you (& your partner) HAVE to take by yourself, for yourself. It's your body, your baby, your pregnancy and your family, and nobody else is the same as you or thinks like you or has your exact circumstances. You could hear other people's stories for ever, but you really do, IMO, need to make this decision based on what you want. For example, you want people to say if they were pushed towards invasive testing...well, firstly, you will have totally different people caring for you, and secondly, you cannot be made to do anything, so I think that's irrelevant to your personal decision. How pregnant are you? How soon would you need to make up your mind re a nuchal fold test anyway?

Rubyone, I went straight to an amnio with my last pg (Hosp didn't offer nuchal fold) as I was in my 40's and wanted to have the info the test could tell us. I think if anything untoward had been found we would probably have terminated. With me in my 40's, dh in his 50's and three children already (and aging parents) a child with a disability would have been quite a load for us to bear. I know the tests can't rule out every possibility but as there was an opportunity to rule out some of them I wanted to take that chance. I know what it is, to some degree, to have a child with a problem as my ds2 had brittle asthma, a condition which ruled our lives for 15 years. It adversely affected our family a lot, and that was with the hope that one day he'd grow out of it. As I say, I hear all the arguments, as indeed you are doing now, but I think it is something that can only be decided by you. No matter how positive or negative people's stories are, you are the one who is having the child and you are the one who will be raising him/her. Make a decision according to what you feel is best for you, not for anyone else. Good luck.

rubyone- I'm the mum of a severely autistic 5 year old, "normal" 2 year old and now pregnant with number 3. My autistic son is classed as severely disabled- and as peskykids says couldn't have been picked up antenatally (actually don't think he was born autistic but that's another story).

All I can say really is the same as Aloha. - Only you can make this decision- it can't ever be the same as anyone else's. I had blood tests for spina bifida and DS in this pregnancy but knowing that it was for info only- we definitely wouldn't have terminated. I have friends with children similar to ds1 (same kind of level of need) who feel quite differently. IN my case I couldn't terminate because for me 9and for dh) that would actually be harder to deal with than a disability- just the way we feel.

The experience of disability is different for every family anyway. It blows some families apart, but others brings closer together. In our case I wish ds1 wasn't autistic (for his sake more than anything), but I do recognise that I have gained a lot in terms of friendships - and for want of a better word- life experience from his condition. But our experience is our experience iyswim- no-one elses.

Suedonim, how old were you when you had your fourth? Just nosey - as fellow ancient mum!

Yes, I'm aware of course that it is my (and husband's) decision but the reason I ask for other people's stories is that it highlights one's own feelings and what they are based upon and helps one therefore to examine why one would go for either option. Already, I find my views shifting - not because of what other people have done or not done, but for the reasons they give for doing what they did. And getting others' views is what mumsnet is all about!

I think it is interesting that one hears a lot about why people would not terminate but very little about why people would terminate, so thank you suedonim for your imput in particular.

And of course, I understand there are very many different levels of disability and most can't be tested for - but I am only concerned with those that can, as these are the ones I have control over at this stage.

Thanks again for all your imput - it's all very illuminating.

Sorry rubyone, without going back all over this thread, have you had a chance to meet any children with DS? Is it something you would consider at this stage?

Hi RUbyone,

I had my ds at the age of 40.We had been wainting ten years for him and decided not to have any antenatal tests except the usual 18 week scan.

We had made the decison that we couldn't go throughwith an abortion whatever the results were so decided to not "know".I am sure any test results would have worried us more than not knowing IYKWIM.

I was quite nervous about the scan as i was counting on that for reassurance that ds was healthy and progressing normally ie.a good sign that all is well.
Thankfully all went well at the scan and I was relatively worry free for the rest of my pregnancy.Well as worry free as any mother is,ie I think all mothers worry about the baby,testing or not.

I had a healthy ds with no problems(not counting emergency csection).I must admit my first question was ,Is he alright? But who's isn't?

I don't know how to reassure you but just thought I'd let you know my experience.

Good luck whatever decision you make.

As I partly mentioned previously. I am now 9 weeks and have a NTS booked for 3 weeks time. I had one done last time and found it unproblematic. My obstetrician has said that a result lower than 1 in 300 would put me in the high risk category and therefore I should consider further testing.

I know my DH would feel strongly that I should get further tests if it came back lower than 300. He feels very strongly that he does not want a disabled child. I don't think that it is a very educated opinion, just his gut feel that he couldn't or wouldn't want to deal with it. I would go for a CVS as opposed to an amnio as it can be done much earlier. I would check on the doctor performing it in regard of their miscarriage rate, but I have had several older mummy friends who have had this procedure without a problem.

I couldn't really say what I would do if the result showed a problem. It would depend on the severity/type etc and I would have to cross that bridge when I come to it, but I ultimately believe that it would be my decision and mine alone, although I would take into account my DH's views and impact on my DS. Of course I hope all of this is hypothetical and that my baby is healthy. HTH.

Rubyone, I did think long and hard before posting here with my view/experience. It goes against most other posts and I didn't want to upset anyone. But those are my feelings and nothing I've learned would have made me change my mind. None of us walks in anyone else's shoes, though I know that on Mumsnet we all try our best to see, and learn from, another person's POV.

Aloha, I was 42 - just a spring chicken nowadays. Did you read about that woman in America who is having natural twins at the age of 59???

I like those stories Suedonim, they make me feel giddily young and skittish (or as young and skittish as you can feel when you are a vast egg-shaped lump!)... even if in the case of Americans I always suspect egg donation.

Apparently not in this case, Aloha. She'd been sterilised almost 30yrs ago (she already has 5 children and umpteen grand and g-grand children!) and went to the dr because she was putting on weight. It was in the LA and NY Times earlier this month, though I can't find it on a search.

I can't help but think how dreadful! Poor woman!

BTW I did inteview a woman who terminated a pregnancy after discovering the foetus had Duchenne Muscular Dystrophy after testing (CVS). She already had a son with DMD and was already in the process of watching him deteriorate and eventually, die - the strain is enormous, physically, mentally, emotionally. The whole family loved that boy without a shred of reservation, but decided that having another child with the same needs and outcome would have broken them. I thought she was enormously brave and could totally, 100% understand her decision.

The thing is- except in very particular circumstances like the one described by Aloha- I don't think anyone can know how they would react/deal with disability. My experience and reactions to it are so very different than I would have imagined. I tend to think that is particularly true of men- you're asking them to consider how they feel about a baby they've never seen/felt/had the hormonal effect of etc. Like AussieSim i think termination at the end of the day is the mother's choice, not the father's (and its amazing how many men are crap when problems first surface but become excellent once the news is digested- dh for example is excellent with ds1- but I had to hide my autism books when I first suspected problems as he would fly off the handle).

I alos think its something that can be intellectualised- as the emotions and experience of disability cannot be understood unless experienced - even seeing close friends/family go through it does not give an understnading of what it is like. So I would always say to anyone- at the end of the day all you can go with is gut instinct. Nothing else.