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!

Thank you so much to all of you for taking the trouble to write.
Strangely, it seems harder to decide now that I already have a child. Before my son was born (and after a traumatic miscarriage) I still felt I needed to have the tests. Now, with this overpowering love I have for my son, I feel that if something terrible happened to him, I'd still love him so why should I feel any differently about giving birth to a disabled child?

But I think one needs to be faced with the actual baby to cope with the disability, if you see what I mean (which is why I feel maybe having no tests might be better) because knowing (and not terminating) would make you so worried and focus on all the problems without that visceral love there of an actual baby in one's arms. Am I right, do you think?

I really wish I didn't have any options. I've never been against abortion in particular but to terminate my own - I'm not sure I could live with myself - so why bother testing at all? I have a hideous feeling that to go with each result and then decide I would cascade into intervention.

Like you, Puffball, one minute I think I want no tests at all, the next minute I want the full works - how can one have such diametrically opposed feelings on this subject?

Thank you Thomcat and Dingle about your own experiences of a child with DS. (what does NT mean, by the way?) I always imagined having a child with DS as being like having any other but more emotional. Though one has to deal with society's prejudices as well, of course, which is not easy.

Reading your messages does clarify things in my mind though. More thinking to be done, however, on my part.

Thank you!

Tinker, what is KIQFTM?

I also was wondering with regard to other things the nuchal/CVS/amnio picks up like Edward's and Patau's - would these babies die in utero? Or at birth? Again, is the only option to terminate? And is there pressure put on you to do so with such serious diseases? I sort of want to let nature take its course (though, obviously, I also want to intervene intensively at the same time!)

There are some prejudices I have to deal with but the vast majority of people either a) don't realise she has DS or see striaght past it because she's just charmed the pants off them!
Best way to deal with people with prejudices is to pity them, I feel sad they can live their lives in such an ignorant way and will never know the joy of a child like Lottie.

Yes having a child with can be a bit more emotional, yeah, I whell up with tears of joy an awful lot, as do the rest of our family! Every time my heart swells with pride I thank God for all the wonderful emotions she's introduced me to. Wish i could send you an m-peg of her 10 minutes ago crawling round the room pretending to be a tiger and then going straight into a pretend swim saying 'Nemo, nemo, nemo'!!! LOL

SN = special needs and NT is neurologically typical. NT is more PC than 'normal'. Lottie is normal, she's just got DS! And anyway what the hell is normal?!

Maybe you could try to imagine yourself on the other side of this - would you feel very stressed not having had the tests? Or would you feel more relaxed having decided not to have them?

Sorry, bit off subject but... Re: 'normal'. I'd just like to share a v quick story about my friend's little girl with DS. She's 8, at mainstream school, and has just started her classes term of swimming lessons. (You only get one term of swimming over your primary years apparantly - shocking isn't it!) She is the only child in the class that can swim without aids, and is busy teaching the others. You should have seen her face when she told us that! Her pride was utterly palpable, as was her mother's!
(Hope I raised a smile from someone at least..)

Sorry, I've just read all the threads and know what KIQFTM is!

From all the different messages, this is obviously a hot issue and on the minds of so many pregnant women. It is a terrible burden in a way to be given technology to then play God. Thank you Thomcat and Dingle for your positive accounts of having a child with DS. There was one woman who said she had a negative experience on one of the threads but I don't know what that was. Maybe I should try to contact her. But I do feel a lot more confident about having whatever comes my way. I am veering toward having no tests at all now.

Oh and best of luck Bunny2 for next week. Please do tell us how you get on. It is so tempting to try and get reassurance - but then if you don't get it, it is such hell with the worry which can push you into just 'having' to know, thus invasive tests. Holding fingers and thumbs for you.

Hi Ruby,
Just want to sympathize with your hard decision. I have nuchal schedule for tomorrow, and I am dreading it! I went through the same process as you, and read many of the old threads here. I decided like you that I just didn't want to have any tests! That that would be the best way to feel stress free and focus on my budding love to my new LO. My husband though (as it seems all husbands...) was not happy about my decision. He is very stressed with another baby (we do have a stresful life we both working full time and a 2 year old DD) and really wanted to have some "data". I told him I would never terminate if we find anything wrong, but decided that going for the nuchal test was a good compromise with him.... BUt after just reading this thread and I am already regretting so much! I know that if I get a borderline result I will loose control over this whole pregnancy and there will be more pressure to do further tests and a lot of stress.
So, my only word of advice, stick with your guts and don't let anyone pressure you!!!!

rubyone, i just wanted to say that if you decide not to have any antenatal tests, you need to think about which scans you will/won't have as well. i would have gone for the nuchal fold test, but the hospital had withdrawn it suddenly and without warning, so i missed the moment. i had 'good' quadruple test results and went to my 20-wk anomaly scan blithely thinking it would be nice to see the baby. 2 soft markers for DS were found. we went for amnio because we were 'lucky' in that me and DH were both in agreement about what a 'bad' result would mean. the amnio gave us the all-clear. i don't need to spell out how awful that period of time was. i wouldn't wish it on anyone. it seems to me that there is a lot of extraordinary technology involved in antenatal testing, but a shortfall of experience in how to read it.

also, 10 wks later, i have to say the doubt has never really gone away. as a friend who has had a similar experience (ie, something that turned out to be nothing picked up at the 20-wk scan) said, 'i won't believe this baby is OK until i see the evidence with my own eyes'

you sound as if your own ideas are firming up. i wish you as stressfree a pregnancy as possible.

rubyone I opted for no tests in both pregnancies (apart from routine ultrasound). The overriding reason was that I couldn't face the risk of miscarriage with amnio/CVS - they were both IVF pregnancies and I might have felt differently if I'd had a normal expectation of having another pregnancy, but as it was I just couldn't put them at any extra risk. It was very much a gut feeling - rather like aloha describes feeling 'protective to her unborn child'. There wasn't even any point considering whether I would terminate for DS, because I couldn't get past the issue of amnio/CVS risks. And because I knew that, I didn't want to have a screening test which could only give probabilities, not hard facts - the last thing I wanted was to be faced with a 'high risk' pregnancy but not want to do the diagnostic test.

I DID worry a little during the pregnancy, but I told myself that in having a baby I was accepting the risk that it might not be perfect, or that it might become ill or disabled or even die during childhood, all eventualities that cannot be tested for or avoided, some much more difficult to dealt with than DS.

I think it is perfectly normal to feel anxious for the health of your baby, but I think we tend to look to antenatal screening to remove this anxiety and tell us that everything will be ok, when clearly it cannot deliver this (Of course I know that rationally we do appreciate the limitations of screening, but emotionally there is a powerful need for reassurance which often makes it hard to refuse).

rubyone, just read your message from last night and wanted to say I really agree with you, especially how you describe how having one child already has made you appreciate how unconditional your love is. Before I had ds1 I did worry that I wouldn't be able to love a DS child, afterwards there was no doubt in my mind!

I haven't read the whole thread so sorry if I'm repeating anything but with dd I was in the c) category. I was adamant that no matter what the tests revealed I would still have the baby so I didn't see the point in taking an extra risk, however small, for nothing. And although the blood test/nuchal doesn't carry the risk, I didn't see the point of having those if I knew I wouldn't have the amnio.

I had no ante-natal testing with any of my three. With dd1 I was being shunted along the routine testing track, when I realised that I wouldn't want to have to make decisions about intrusive tests let alone about terminations. So I decided to step off the conveyor-belt, and never regretted it.

Yes, I had occasional panics that my child might have Downs Syndrome (for some reason that worried me more than anything else), but then at some stage I realised that a baby with DS would still be my baby, and we'd just deal with that if it happened.

I did get some quite odd responses from medical personnel, particularly in my 2nd and 3rd pregnancies, as my sister had had a baby with trisomy 18 (Edwards sydrome), who died at six weeks. It was a very sad time for all the family, but peaceful in its own way, and no more traumatic than having an induced labour at 24 weeks, with all the guilt that must entail. My sister still felt she'd made the right decision and went on to refuse all testing in her fourth pregnancy, including 20-weeks scans. She encountered downright hostility from medical staff, but ultimately it's no-one else's business but your own.

I didn't and still don't see how not having testing makes you irresponsible by the time they do the testing, all the genetic dice have already been cast, so it's effectively a decision whether you accept your pregnancy (and your baby if you want to look at it like that) as it is, or whether you feel strongly that you would terminate if the baby isn't 'normal'. Having a baby is effectively like signing a blank cheque anyway the tests don't come with any guarantees that your baby won't have a hidden disability, and there's a certain calmness that comes from having made a decision to accept your baby however he or she may be.

Good luck!

I didn't have the tests because i knew i would have the baby regardless of the results. Yes i worried that something may not be wrong, but knew we would cope and love our baby whatever the outcome.

Thank you so much for these last messages. I agree totally - one wants reassurance (particularly if you've had miscarriages and/or other traumas in your life as I have) and look to ante-natal testing for this. Also, being 39 one knows that one is seen as a high risk category. (were any of you in this age category?)

So right that you are not changing the diagnosis by having testing - the die is cast as you say Frogs, what you are deciding on is if you are going to terminate or not.

It's the issue of self-blame that I can't get round. I know I would feel terrible GUILT and agonising grief if I personally had a hand in finishing a pregnancy (note, one can't say 'kill' in these discussions, which says something, for fear of sounding 'pro-life, which I'm not(in the sense of the movement or being against abortion in theory) - but you ARE ending a life). I want to feel blameless even if I have to have a baby that dies at a few weeks - that would be nothing to do with something I have done. Does this make sense?

Yet, even still, I feel a pressure to go through the system - why does it feel teh 'responsible' thing to do? It's odd. Somehow, the situation has arisen that the responsible thing to do is to interfere. I wish I was a staunch Catholic or something where there then would be no question about what one would do.

I was 37 during my last pregnancy.
I think the 'pressure' arises from opting out of something which most people do. But this is a personal decision and you shouldn't feel in any way swayed by other people's decisions.

Yes, ruby, what you say makes complete sense, and I think that's how we all felt about my little nephew. His life was very short, and not entirely comfortable, but we all felt privileged to know him, and that somehow nature had taken its course.

I think there are lots of women who feel like you, but the medical system is not very honest about the implications of the tests. The real antenatal testing scandal is the fact that women are herded believing that they're taking out a health-insurance policy for their baby, only to find they have to make all sorts of decisions they didn't realise they were signing up for.

Frankly, once you have children, people are going to be criticising you whatever, so you may as well get used to it. Once you've made your decision, you just have to get on with it, and tell anyone who doesn't like it to get stuffed (or just smile sweetly and ignore them if your temper's up to it).

Oh, and my sister was 40 when she had her 4th (test-free) pregnancy (her baby was fine). I'm younger, but still well into my thirties by the time I had my 3rd.

To be fair, just because you get a diagnosis pre-birth (via scans or in other ways) it doesn't mean you have to terminate at all. It may mean that you can get proper medical support set up from the time of the birth and not have to wait, and also you could prepare yourself. A routine scan could show an abnormality that might indicate special care at the moment of birth for example, or a limb defect that might be a huge shock if you hadn't researched it in advance. A diagnosis really doesn't have to mean termination. However, if you aren't going to terminate under any circs, then the risks of CVS or amnio are probably too high. Funnily enough after my nuchal my age related risk plumetted, but when it came to my 20 week scan, they misread my notes and thought my chance of my baby having Downs or something (at 41) was one in 80 or something instead of one in nearly 500, so that's why (I realised in retrospect) my 20 week scan was so incredibly thorough and why I had so many professors peering at my baby - they thought I had refused CVS despite being 'high risk' and were being extra thorough. I was very pleased to find out that my baby had no heart defects etc etc so that even if she has a medical condition at birth at least I won't be panicking about her heart, organs etc.

Also, even when they thought I'd refused a CVS despite a 'high risk', I have to say I came under NO pressure at all to have invasive testing. Everyone was very nice and gentle.

Nice post frogs. I like the blank cheque book idea! You're so right.

Message withdrawn

my notes have declined across all tests apart from scans.

even at only 24 i was offered all the tests.

Hi
I agree with totally with Frogs sentiments. I am 36 and currently pregnant with No2 and have refused all screening. Personally, I know I would love a SN child just as much and, no matter how hard, would willingly raise him/her (or be there for them and then mourn them when they died naturally if it turned out they had a terminal condition). I have thought long and hard about this scenario being real although I have no reason to suspect that I will not have a healthy baby.
It is very hard to express how I feel exactly as I realise many other would make different choices and have no wish to offend or upset or be judgemental in any way - (although that said it does sometimes feel that those with my viewpoint are made to feel as though they are treading on eggshells and must reach for the appropriate PC words and euphemisms for fear of offending someone.... I get offended too!!!).