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!

Ruby One, I just wanted to add that I think that you are actually quite brave to stick your head over the parapet and ask for the downsides. I wonder if to ask to discuss the potential downsides can sound like one is being prejudiced when actually what one is asking for is a full and rounded perspective of life with a child with additional needs of any variety to give you a better 'feel' for the reality. (I use 'one' not to sound like the queen although it rather suits me , but because I don't mean you in particular, I mean for anyone to bring up the discussion)

IMO it's much harder to talk in public about the negatives if you don't have the authority of dealing with children with additional needs. It's easy for someone like me, with little experience, to expound the perceived positives and theoretical arguments but at the end of the day I actually know diddly squat!

Gut instinct, I think that's exactly it, Jimjams. My gut instinct is that I know I'd be a cr@p mother to such a child and that he/she deserved better than me. Aloha hit the nail on the head on another thread when she talked about the aging and dependency factors. Those aspects scared the sh*t out of me, I'll be honest. Maybe if it was guaranteed that there was 100% support from the state for every single person with special needs, I'd feel differently.

I do think fear and it has to be said, probably, prejudice, does come in to it. How can we say society isn't prejudiced against disabled people?

One has to question the entire antenatal screening programme that accepts the termination of disabled fetuses - what does it say about our atttitudes? But it is now the norm and acceptable in society so we have a choice. But as someone said earlier, where do you draw the line? Wasn't there someone in the news recently who aborted (late, I think) because of cleft palate?) Obviously, that person drew the line further (or nearer?) than a lot of people would.

If we have a national screening programme, why shouldn't we discuss it? Acceptable though termination is - and I might myself go ahead with that option if I opt for screening, who knows? - it has to say something about what we feel about disabled people in society. It's a lot about fear of having to go there and be involved in that side of life and fear that we will fail at it miserably.
When you are being given a chance - through screening - NOT to have to go there, it is tempting. Which is why I want to know what it is exactly I am scared of. Didn't Thomcat pose exactly that question?

God I could talk all day about the negatives of having a child with severe SN Actually I think ds1's LSA summed it up (she's a mum of a child with SN as well) when she said "let's face it its pants isn't it". And to be honest yes it is. But at the end of the day its still a child- and its a child you love as much/more (and I say more because so much of parental love is to do with being protective) than any NT child. Which is why it comes down to gut instinct. I know that for me a termination would screw me up more than having a child with SN. Having a child with autism makes daily life very very very difficult but I could never deal with a termination. Emotionally that would screw me up more and would probably affect my life more, and in may ways would curtail me far more. Daily life is bloody hard, but my emotional life isn't. Emotionally I think I'm balanced, whereas I think a termination would be something I could never come to terms with. So for me the decision is a complete no-brainer. Couldn't do the termination, so would have to bear the child. Does that make sense?

IN the case of severe autism it also makes parenting your non-SN children and absolute pleasure and dream as they are so unbelievably easy compared to the other one. A rather warped advantage but something I feel.

Hi Rubyone, I just wanted to add my thoughts my 2 eldest were born 13 and 11 years ago and apart from amnios which were only offered top older mums, there were no, blood tests or nuchal fold tests, just a scan at 19 weeks, both were born healthy( although sadly it has become obvious that dd 13 has mental health probs which you could never forsee)however I was offered the triple blood test with 3year old ds and refused because I knew that I could not go through with amnio, if the scan had shown up a severe prob which meant he wasnt viable or would have a dreadful quality of life I would have then possibly made the decision to termiate although It would have broken my heart it would have been preferable to giving birth to a child that would possibly die soon afterwards or live a v miserable life, from the point of view of the child and myself.with dd who is now 4 months I refused all testing except for the usual scans at 12 and 20 weeks.Although not over 35( im 32) I realised that my risk of having a ds baby was slightly higher but we discussed it and both agreed that we would never terminate a ds baby because they can have a wonderful life and are lovely , happy and giving children who bring great joy into their parents lives.I read up on ds beacuse I wanted to prepare myself for the possibility and that was it.I was given a nuchal scan routinely at my hospital as part of the 12 week scan but pointed out that I would not have further testing unless the result suggested a severe abnormality, then I would have opted for cvs but would only have terminated aseverley disabled child that would have non-excistant quality of life.We were adamant that we not terminate.As it was every thing was fine but there are plenty of disabilities that cant be dete cted in ante-natal testingso there are no garauntees any way.I think you have to have listen to your heart, if you dont feel comfortable with a test dont have it.Most severe abnormalities can be picked up on scans and from experience of a friend with a ds child, they are a gift not a curse.

Hi Rubyone, this is myfairlady. Today is the first day that I am back in the real world. I had a termination last Tuesday. I wanted to let you know what I feel. Quite frankly I waver between, the feeling of relief and peace and an incredibly strong feeling of regret. There is no turning back of course, but I wouldn't go into the decision of a termination if faced with a diagnosis of down syndrome lightly. You will most probably be fine if you do decide to go for the test. But having been through this experience now, I wish I hadn't known and been given this baby at birth and had to deal with the life ahead. I feel dreadful a lot of the time because I feel as though I have killed my own child and now it's too late. I would have loved it however it had come out and now we are burying it. It is quite simply awful. however my situation arose quite unexpectedly, my screening was routine everyone does it and I didn?t expect anything to be wrong, when I was given the 1 in 3 risk there was no doubt in my mind that we needed to have a diagnoses. I did not make a definite decision until we had the diagnoses, I certainly thought about it a lot and did a lot of research but you cannot make the definite decision until you are faced with the reality of the situation. If I do ever get pregnant again, I will go for screening to get an idea, but I will not get a diagnoses and will have the child however it is because I will love it however it is and I am ready for the child to turn my world upside down and show me how it is. I won?t be scared. I have regrets about what I have done, but I also know that there was a reason for having done it, we were given a choice and it has changed my life for ever. No one prepares you for a situation like mine and you can only deal with it the best you can at the time, my feeling of regret will get less and I will start to be able to forgive myself at some point, but if ever faced again with the same situation I would not terminate, it is too hard, and I will be able to know what to do since I have been there before.

You need to discuss with your dh how he feels about having a special child with DS, because if you feel you can cope and you want to face the challenge then that is already a great help in the direction of a decision incase you are faced with having to make that decision. As some of the others have said, there is the chance of another Chromosome abnormality where numbers 13 ands 18 have extra ones. These conditions are more serious and the child is not likely to live beyond 1 year. I think to find this out is worth it and I think a termination in this case is something you would do in order for the child to suffer less.

I still don?t really know why I decided to terminate. I fear it was for selfish reasons and that my husband was so anti it, I love my husband and I didn?t want to throw a curve ball into our fantastic relationship. But there are also times that I realize that this world isn?t really very nice and that my womb was the best place for my baby and it is the only place he/she will have ever known. I also know that I have handed my baby back to its creator who will love and care for our baby until the end of time.

There?phew, no idea if this has been of any help, I think I needed to get some things off my chest, thank you.

What is really important to realise is that all my friends in their thirties have had the nuchal fold test as routine, had a low risk assesment and went on to have NT ('normal') babies, please remember that only 2% of babies are born with abnormalities, so you are pretty safe, please remember that.

I wish you all the best Rubyone, myfairlady

Oh mfl, am wishing you lots of peace for teh future. Take care x

Myfairlady
You did what you thought best.
You can do no more.
And no more can, or should, be asked of you.
Peace
xxx

mfl,
plse dont beat yourself up, it is not surprising that you feel such a mix of emotions after what you have gone through,

I answered you on the other thread, I have had a similar experience and if you want to CAT me then plse do so

thinking of you,
mindy x

Mfl, so sorry to hear of your loss, you made a very difficult and brave decision, I am so sorry, ,my thoughts are with you xx

Dear MFL,
Thank you so much for your message. I was wondering how you were getting on. It was very useful to have your testimony and I think it will help a lot of people because these are the decision older women now have to face. It ruins pregnancy and part of me feels angry that we have to make these decisions. The clock can't be turned back on science that has provided us with these 'choices.' I'm so glad you wrote because it is so important that all sides are talked about. The sad truth is that there are reasons to keep a baby and reasons to terminate and every one has different reasons for each. But, as you say, how can you know how you will feel after you make one of these decisions - either way?

My thoughts are with you in your grief - it is a very difficult grief to come to terms with which is why this whole situation of 'choosing' is so incredibly hard because if someone just dies there's no self-blame whereas if we 'choose' then we blame ourselves, however sanctioned our decisions are. I still don't know what I shall do. No doubt I shall decide the day before.

Warmest wishes to you and I pray that you are blessed with another pregnancy.

All the best
Rubyone

myfairlady, i've been thinking about you too, xxxx

my fair lady
I know I speak for scores of us when I say that you have been in our thoughts and hearts these last few days.
You did what was right for you.
May you and your family and your baby be at peace now.

Dear rubyone and moondog, spacecadet, bundle, peskykids, mindy and tinker.

You are very generous thank you, just quickly, I feel I am getting closure as we are cremating our baby today and then burying the ashes in a family plot on Monday. Time does heal and I am starting to feel like I am able soon to go on with the rest of my life

Rubyone what is important for you now is that what ever will be will be, and I don?t think you should worry about the screening too much. However as you said you will make the right decision the day before, you will feel what is right in your gut, always follow it. I wish you all the best with your pregnancy and send you my love.

MFL - you're an amazing, courageous lady. I wanted to wish you all the best for the future.

Mfl, I had a still born boy 14 years ago and although I still cry even now, the pain lessens each year and I will never forget him.I was told I would never have any more children but I am now blessed with 4 beautiful children, I truly hope that one day it happens for you and I am thinking of you {{{hugs}}}

Rubyone

I guess it depends on how you 'use' the information. Sometimes being fore-warned of something can be extremely helpful. It allows us to consider different options, talk to people who have been in similiar situations and prepare ourselves for difficult situations. I recently had CVS after being given a 1:15 chance of having a baby with trisomy 18/13. I am pleased I had the test.

Remember the probabilities that your baby will be fine are still definitely in your favour (despite the miscarriages and your age)I am sure the scan will reassure you. (Just to put things into perspective even my high 1:15 risk only gave me an approximate 7% chance of a chromosomal abnormality. That is a 93% chance that the baby would not have a chromosomal abnormality.)

My results came back negative. We are not out of the woods yet (Ie cardiac scans etc to come) but I feel the more we know the better, for both us as a family and, of course, for the babe. Why it might be that this information saves its life.

Hi everyone,

Thought you might like to know that I've finally made a decision. I'm having no tests at all.

It was incredibly hard to make it and then suddenly I realised that this was what I was going to do and I feel okay about it. I realise that I can and will love anything I get and feel lucky to get anything at all!

Inglis, I read your message on a different board and actually you swayed me the other way around! You had a very high risk assessment and then went through a CVS and were diagnosed that your baby is fine - which of couse, statistically as you say, was likely as the odds were still in your favour. Thank god your CVS was fine. But if you had miscarried.....as people do - one in 50-100..... I just can't take that risk having had previous miscarriages.

I'm hoping everything will be fine even at my age. If not, as I say, I shall just have to get on with it and love whoever comes my way.

Thanks to you all for your contributions. It's such a thorny issue. Your opinions did help me a lot and definitely swayed me towards no testing. The testimonies on having a child with Down's syndrome, gave me courage to take the risk.

Love and thanks to you all.

Good for you rubyone! Even though I counselled the opposite I can totally understand your decision. To be honest, even though the odds are in my favour that all will be OK, I spend a disproportionate amount of time worrying about the outcome of this pregnancy. For after all, CVS can only rule out chromosomal abnormalities. It does not guarantee a healthy baby. As a result I have ceased to enjoy the pregnancy.

The only thing I would take issue on is the miscarriage risk you quote for CVS. My understanding is that it is 1% for the general population. But when there is a skilled practioner carrying out the procedure this risk falls dramatically.

Rubyone, enjoy a wonderful pregnancy. You will be blessed with a beautiful child. xx

Rubyone
I think I've misunderstood. When you say you're having no tests whatsoever I presumed that meant you're not having the nuchal scan. Have I got the wrong end of the stick here?

inglis, I think it depends where you have acvs done - each hospital has its own stats. At mine it was 3% risk of miscarriage.

rubyone, I responded earlier when I was waiting for the birth of my baby still not knowing waht to expect following a poor nuchal scan result. Well, our baby wasa born last Monday and she is absolutely perfect, healthy and beautiful. I shudder to think I may have lost her through and amnio or cvs and I am so glad I opted out of those diagnostic tests. If I get pg again, I'll refuse all tests for sure.

MFL, hugs to you.

Inglis, yes, I mean to have no tests at all neither a nuchal or blood tests. Nothing. Our local private hospital that does nuchal and CVS quoted a 1 in 50 chance of miscarriage. I think the Fetal Medicine Unit is 1 in 100 as they do it all the time.
Bunny2 - congratulations! You must be so relieved and happy. But you would have loved your baby regardless, I'm sure. What a horrible worry, however, throughout your pregnancy. Your email did influence me, I have to say. Best of luck to you and hope you are getting some sleep!

I'm so pleased Rubyone, I truly am, now you can sit back, get huge and enjoy it! I look forward to reading all about the birth and hearing of the safe arrival of your little one.

pleased to hear your decision rubyone. Like I sadi, I had nuchal fold testing with 1st 2 & only with pg 3 did I actually question it & go throught the process you just did & I was pleased with the decision. I would do the same again. Hope you have a wonderful & stress-free pregnancy. Best wishes for the summer (guessing your baby due then)

And big congrats to you bunny 2

I am glad that you have made your choice Rubyone!
Now just enjoy the rest of your pregnancy for the wonder that it is! Love & hugs,Dingle.