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!

Just want to add GOOD LUCK Lua for your nuchal scan tomorrow - hope it all goes well.

How's it going rubyone?
I have read this with interest and it's good to hear that at least I'm not completely alone in my thinking!
I had just had my 35th birthday when I found out that I was pregnant with dd. I wasn't encouraged to have any additional testing (ds was about 1.5 at this time). My main reasons for not pursuing further testing was because personally, I know I would not have done anything about it if anything had been found. I was suffering from really bad hyperemisis(sickness)as I had done with ds. I was (sorry to be blunt) throwing up 8 times a day and struggling not to be hospitalised as I had been with ds. I was so aware of this tiny little life inside me, causing me to feel so bad! I was having this little one, whatever the consequences. I didn't really have any worries during the pregnancy though. Perhaps that didn't help when I had dd only to discover that she had DS.
I was sad, I was emotional, she wasn't perhaps the baby we were expecting. It took me a day to take it all in before I let in the floods of cards & flowers-I almost had to grieve for the baby I hadn't got before I could celebrate the beautiful, healthy little lady I had.
I can remember sitting in my room in the hospital with dd and overhearing that the lady in the opposite room had lost het baby who had been born prem at 27 weeks-I cried so hard, how selfish was I grieving for something I didn't have when I had this gorgeuos little girl to love and care for just like I love & care for her big brother.
I guess what I'm trying to say is that the "what will be, will be" approach was right for me.
I look at dd now with so much love and amazement, she is absolutely wonderful, in a way I can't describe, her whole being, her character, her cheeky little grin. It is no good even wondering what she would be like without DS, it would be like wondering what a child would be like without a heart- she is dd and that is all I would ever want!

Thomcat I think your post is inspiring and beautiful and should be published. I used to look after a little girl with DS when I lived in London and I miss her terribly, she is one of the most optimistic, loving people I've ever met. Every walk involved her kissing her reflection in each shop window as we went past.

I found the testing issue very difficult and think it is so important to know what you will do with the results when you get them - I wish more help was offered with this. Rubyone, I wish you well and isn't the advice offered here fantastic?

Dingle, you say 'additional' testing. Did you have scans etc? I was pleased I had mine just to see my little girl and have the reassurance of seeing her moving about and waving her arms and legss Though I am a very nosy, impatient person by nature.

Thanks Dingle and everyone else too for your posts. I agree that when you suffer terrible sickness (as I am at the moment - and did with my son) you are less inclined to do anything that would put the pregnancy at risk. I don't think I could face this sickness again. I still can't make up my mind. Actually, if I could have a few moments without throwing up or feeling as if I want to throw up, I feel I could get to a decision!!

oh am in the c catorgory as well then.

DS doesnt scare me, phase me or whatever. everyone is different, and why should i stop a child being born because they may have different abilities to other chilren. i know this is a sensitive issue, but to me the question of tests didnt really come up with this pregnancy. i just said to dh 'no tests' and he agreed. have had extra scans on babys heart due to dh heart problem but thats about it. didnt even have the triple test this time (had it 1st time, and barts test 2nd time), as i found even waiting for the results of them stressful.

hope you come to a decision you are happy with soon rubyone.

Hi rubyone - glad you have got such interesting responses. You started a good thread here. In answer to your question I am 38 so automatically in a high-risk category. I cant wait for this baby to be born - look out for my birth announcement!

Rubyone,I had no screening or testing done when pg with dd as I wouldn't have terminated anyway.Plus having been told that I'd never have children,& having lost a baby,I knew how lucky I was & was happy to accept whatever came my way.

Another reason is that a friend lost her perfectly healthy baby after an amnio.{sad}

I had my 36th birthday just after I found out that I was pregnant again & have declined testing this time to.

My uncle has Spina Bifida,CP & Mental & physical disabilities & my midwife ect is aware of this,but I have never felt pressured into tests of any kind.

bunny2, I haven't read all your thread yet, but my heart is with you for this baby. I am sure that everything will be fine. I know it is easy for me to say, I'm so much further down the line now!
Aloha, being really ignorant here but I did have various blood test at my booking appointment(4 from what I remember)but to be honest I was still being so sick, to get through 1 day at a time was enough of a challenge for me and any information linked with any higher risk never came back to me. I was offered the chance to pay for the nucal scans, but declined. The only scans I had were several "basic" routine scans. The first at about 12 weeks, the next at about 20. Out of interest they did call me back for an additional scan to check growth I was told. Did they suspect something then? I'll never know.
DD was not really a small baby,7lb15oz,53cm,had no heart defects. (she is off the height chart for DS now and is above average on the standard growth charts.)

I only wondered because I can't imagine not seeing my baby before she was born if it was possible, but even that's a double -edged sword, because you know they are looking for something wrong. I found my scans very moving and exciting though.

hi rubyone - I think you are right to think you would feel differently about a disability if you are actually holding the child rather than it just being a diagnosis.

My dd was diagnosed at 4 months with Aicardi Syndrome. It can't be tested for antenatally, but if it could have been, to be completely honest, I may have considered a termination. I don't think I would have thought I could cope with or want a child with SN. As it is, I cannot imagine life without dd, nor can I imagine her to be anything other than who she is. And I couldn't possibly love her more.

The way I see it, okay this wasn't what I expected, and it wasn't my dream of parenthood. But this is what being a parent really means. It is what it is all about. Loving unconditionally, accepting your child absolutely, taking on whatever you have to.

And as frogs so rightly pointed out.. there are no guarantees in becoming a parent. Is having a child with a disability harder than having a perfectly NT healthy child who develops a brain tumour and dies at age 4 (as my friend's did) ? Or having a 14 year old who becomes a heroin addict and will have nothing to do with you?

I guess what I am trying to say is that no antenatal test is going to tell you how your experience of parenthood is going to turn out. You just have to make that leap.

I have been pondering this overnight....

I admire anyone who has decided not to have any antenatal tests. I think it is all too easy to go along with them thinking it is the right thing to do. But really, what are most of us hoping for when we have them? I think if we are honest, it is to be reassured that we are going to have a healthy happy normal child.

Well, it doesn't tell us that at all. Aside from the rather extreme scenarios I gave last night... as Lou33 pointed out there are many many many other conditions that cannot be identified antenatally. By having the antenatal tests all we are ruling out is a handful of conditions. And ironically, the one which most people fixate on, DS, is by far and away, in no way, the 'worst' thing that could happen. I know many would feel it is not a bad thing at all.

Secondly, this thread has really made me think about where I stand on antenatal testing. I am not against testing/scanning per se. Of course it has a value in detecting fetal abnormalites as well as providing all sorts of other information. And I thought your point, aloha, about it enabling hospitals etc to prepare for potential problems and having medical assistance on hand etc was really valid.

But I am against testing for DS, especially routine testing. I didn't used to be. I used to believe that it was important for people to have the choice, and that if couples felt they wouldn't be able to cope then it would be better if the pregnancy was terminated. That otherwise there would be all these babies with DS out there that no-one wanted. But now, I truly honestly believe that most people infact underestimate what they could cope with. I also believe that very very few families would, at the end of the day, not want their child with DS. Because I think they would find the reality is very very different to their fears.

Okay - I'll get off my soap box now . I could go on forever. I guess the newly aware mother of a disabled child is a bit like a born again christian or a reformed smoker.....

Heartinthecountry, I have to thank you for that post. I wish I could have said that myself, it's certainly how I feel, you made me realise how strongly I feel that as I read your words. I sat here with tears running down my cheeks, saying to myself 'yes, yes, yes'.

So thank you for putting, so well, into words what I have felt deep down in my heart for so long. I think you must speak for every parent of a child with special needs, esp a parent of a child with Down's syndrome, I know you speak for me.

You can really tell you've been thinking about that overnight Well said mate, if only we ruled the world, or at least ruled that part of the world aye! TC xx

I am c - for both pregnancies - dd1 now 2 was born with down syndrome.. and I knew beforehand - she was diagnosed with a heart defect( at 20 - 22 weeks) that goes hand in hand with ds... I chose not to have an amnio as it would not have changed the outcome. We did as much reading and preparing as we could - especially in terms of her heart defect. But we went on and continued to enjoy this pregnancy as any couple would. This was our first so very exciting times. I can honestly say that the first few weeks until her heart surgery were difficult..... There is no point in lying about it but once her surgery was completed - she is great. Like tc I can honestly say there are no downsides to raising dd1 - she is just amazing.... She really does not take that much more care than any other child - not just me who says that but other people who have looked after dd1 and been a bit concerned about how they would go. They have been surprised how easy going she is.

On Monday I gave birth to dd2 - again chose no antenatal tests ( other than the scan) Scan picked up a soft marker for ds which raised my risk of having another child with ds. My risk was already higher than that of a woman my age as I already had a chid with ds. I chose not to have an amnio and to be honest neither dh nor I worried about it for the rest of the pregnancy.

Dd2 was born with nods and at the moment is harder work than dd1 was at this stage. DD1 slept through from the time she came home from hospital. so no sleep deprivation..... this time round there is and Oh my... not sure how I will go.

DD1 absolutely adores dd2 so far

Oh I was 34 when dd1 was born and 36 when dd2 was born.

The best advice I can give you - is that you have to decide what is best for you and your family. Everyone's situation is different.

Agree with you HeartintheCountry. FWIW I am struggling at the moment with the fact that I had the CVS test plus genetic screening and everything came back as fine', but now that my darling little boy is here there are definite signs that everything is not fine'. He is developmentally delayed, has one kidney and is not babbling. Just wanted to reiterate what the others have said, that CVS testing does not guarantee a healthy baby . Sometimes wonder whether if I hadn't had the test I would be better off - its a case of hopes raised and hopes dashed .

On a happier note. I love him with all my heart and cant imagine being without him, but know that our life may have been turned upside down forever by his arrival.

I send you much love for what is a very personal decision [hugs]

Just wanted to add, that the `problems' I listed re my son are tip of the iceberg stuff and there are all sorts of tests going on atm. Just couldn't face listing them at length, because it saddens me so much and he is ......gorgeous .

And he always will be gorgeous, Merlot (with the usual 'ungorgeous' moments everyone has!) Try, try, try, not to let the battery of tests drag you down. Without wanting to sound glib, he'll be the same little boy with or without whatever label the medics decide to attach to him. And no-one can actually predict his future - however much the docs or anyone else might like to.

Thank you so much again for your messages.

Thank you HeartintheCountry for your thoughts - I completely understand where you're coming from.

Thank you Eidsvold - did you say your second child had nods or no DS (just wondering if nods is another condition I need to worry about?!) My thoughts are with you - we went through terrible sleep deprivation with our very healthy son for the first year (I wasn't well myself which made it hard) - it can be very tough (relatively speaking).

Thank you Merlot - I am so sorry you are under such strain and worry - it's the worst feeling in the world when the person you love most has something wrong with them and you don't know how bad it is (I know this from a different experience) - sending all my best wishes.

I had a sort of epiphany tonight worrying away yet again about my decision. I've been puzzling away at something I mentioned in an early post about why it feels as if you are being irresponsible by NOT having any tests. And then a question popped into my head and it seemed to answer things for me. The question was: what is actually safeguarding the (unborn)child's health most - having the tests or not? Somehow the ideology behind tests is that we're being responsible by finding out the 'health' of our baby to be - in as much as science can tell antenatally - . And the answer came back loud and clear: having ante-natal tests is most likely to endanger the health of your unborn baby because it may lead to invasive tests (1 in 100 miscarriage) and possible termination. How does that benefit the baby? And I thought - my God what kind of mother am I?

I know this is emotive but if feels right to me. I have to add that it has something to do with being a mother already. I didn't feel the same with the antenatal tests (luckily my integrated test at Barts signalled no need for invasive tests) - but now I am a mother, things have changed. It's hard to put my finger on, but I'm thinking like a mother rather than before my son, when I didn't know what being a parent was or felt like. Does that make sense to anyone?

Yes that does make sense Rubyone, but then tbh it would also make sense if you had said i'm going to have the test because as I'm already a mother I have to think of the impact of a sn child on the rest of my family. It's an emotional minefield whichever way you look at it.

Thanks for your words of support - much appreciated and to peskykids, you got it in one, he will always be our beautiful son irrespective of any dx or label.

Makes perfect perfect sense to me. I had an amnio with dd2 which went fine but she was terribly ill for the first few months of her life and having contemplated losing her, I now can't believe I willingly went through with a test which could have put her in danger, purely to put my own mind at rest - ie in no way for her benefit, as you say. My reaction isn't a logical one, of course, as the amnio had nothing to do with what happened later, but having thought she might die just put everything else in life (and I mean EVERYTHING) into perspective. good luck and I'm sure you're making the best choice

This is a great thread and has given me a lot to think about. I am 35 and 8weeks pregnant. But I saw a few examples on here on women who's husbands felt very strongly about testing and SN children, as mine does and no matter how persuaded I am by the info on here that testing has perhaps no upside, this is not a decision I can take on my own, or enforce on my DH. What does your DH think about all this Rubyone?

My husband is irritatingly supportive about any decison I make! Nice of him, of course, but in a way, I wish he did have strong feelings either way as it might sway me.

I still haven't completely made up my mind. I have all the appointments booked and will wait until the day before, probably, to make a decision. I am strongly veering, however, against any tests. The fact is, as has been reiterated here, the die is cast and the only way I can influence what baby I have is by risking miscarriage by invasive tests or terminating. Otherwise, 'finding out' doesn't change the diagnosis.

when I was pregnant I missed the nuchal fold scan but opted for a quadruple test (blood test) because I "wanted to know either way" I had a 1 in 40 chance of DS but decided not to have an amnio because I'd have gone through with the pregnancy anyway and didn't want any risk to the baby. Further scans showed no markers for DS or other problems and the Dr said the chances had probably gone down to 1 in 70. It didn't really affect the rest of my pregnancy once I'd made the decision but my first question after she was born was whether she had DS - so it obviously was still an issue. My sil had a ds baby after her tests said she wasn't going to (not sure which ones she had). Having said all this I don't know if I could go through a whole pregnancy knowing I could be tested and not having the tests as I'm a bit of a want to know sort of person even if its only knowing the odds(I had to know the sex of baby too).

Hi rubyone, difficult decision isn't it. Its one of those times when you wish someone could just tell you 100% what the right thing to do is and you don't have to think about it anymore. Unfortunately its not like that and there are good arguments for both testing and not testing, no right or wrong answers.
In my experience I had the blood test a 16 weeks (no nuchal scans round here). Never was keen on amnio and didn't really give blood test much thought. Test came back 'high risk' of downs and I was contacted by antenatal testing adviser about amnio. I decided against amnio based on my 'high risk' being 1 in 176 (so just thought have 175 in 176 chance of unaffected baby). Also I felt that if I was to find out my baby had a problem I would be unable to terminate and so the test would not affect the outcome for me. I did think it would have been nice to know for definite though, just so I could have prepared myself if anything had been wrong, but wasn't prepared to take the risk of miscarriage for this.

Daisy50

I love your calculation! "thought have 175 in 176 chance of unaffected baby". We do all rush to the 1 in 176 side of things don't we. I don't think the docs help much either, possibly because they are more conscious of potential litigation, or possibly because their job is to have utter faith in medical science being of help in all instances. Knowledge is not always power... Discuss