DH upset because I don't want CVS (long sorry)

[CourgetteFlower]

Regular but have namechanged. Looking for advice from anyone who might have been in this situation.

Brief background: 2 DCs, 2 early m/cs last one in Jan. Age 37, 7 weeks pg. DH adamant he doesn't want a handicapped child: his exact words this morning "I don't want it if it isn't normal".

We did talk about prenatal screening when I found out I was pg 6 months ago but because I had bleeding there was more concern about whether pg would continue than anything else. We had non-invasive screening for my two successful pgs, I found it not to be reassuring at all (1:350 based on age) and consequently don't think there's any point. Already have ureaplasma infection (asymptomatic) that gynaecologist has said puts this pg at risk. I'm of the view that the pg should continue whatever if "compatible with life" and am not happy about the m/c risk of CVS. DH's main argument is that a child with Downs would adversely affect the two children we already have. I feel damned if I do and damned if I don't go through with the test: if I do, obviously because I would never forgive myself if anything went wrong and because if I don't, it will cast another shadow over a marriage that is already strained. Help.

Bloody hell - what a nightmare. Could you not just have a nuchal screen which would give you some idea about actual risk for you? Then maybe discuss some more.

I think I would be very upset if my DH had that same attitude as yours but I guess he is entitled to his view. You need to come to some agreement I guess. He is being very harsh I think.

Maybe a more accurate risk assessment will give you both more information and if you come out as high risk then you could consider amnio or CVS and if not then maybe your DH would settle for that?

Good luck with whatever you decide. It's a tough decision even without the relationship issue.

I agree with fifitot - at least have the NT test and get your risk numbers before you decide? They may come back very positive and DH will feel much more reassured.

I agree with you though, there is no way i would consider an invasive test risking misgarriage when there is no reason to suspect a problem.

Did you have a CVS with your previous pregnancies - why is DH so adament this time around?

Thanks for replying. I'm not in the UK. I don't think they offer the NT test where I am, at least not locally. Will ask the doctor.

I only had the triple test for both the other pregnancies but I was aged 30 + 31 at that time. TBH I didn't get any reassurance at all from it: it was just a statistic.

Yes fifitot I am very upset by his attitude: he seems to think pregnancy is about ticking a series of boxes and if something goes wrong you can just rub it out and start again .

Don't go down the testing route if it doesn't feel right for you. Yes it may reassure your husband but on the unlikely event it comes back high risk, what then?

Early pregnancy is a very stressful time as you know and It's a shame you've found yourself in this difficult position with the one person who should be supporting you.

Ignorance fuels fear and it sounds like your husband needs to address this problem especially as you have children together. Pregnancy and testing aside many disabilities reveal themselves after birth and DS is infact now seen as on the milder end of the scale, things have changed a lot in the past 20 years.

I'm sorry I haven't given any suggestions on how you can resolve this, and when it comes to testing there are no easy choices. I certainly don't want to give marriage advice either just want to wish you luck in your pregnancy and the choices you make.

Courgette, sounds like a very stressful situation for you .

Again, I'd go with what Fifitot says - although if you don't have access to the combined test that makes it harder. FWIW I had my DS aged 37 and combined test was something like 1:30,000 so remember each pregnancy is different, if they factor in bloods and nuchal fold as well as your age.

On the other side of things, I was pregnant last year, wasn't offered the combined test but at my 13wk booking scan very obvious abnormalities showed up. This is not always the case with T21 but probably more common with T13 and T18 (CVS confirmed T13 and she died a couple of weeks later). So later scans at around 14-18wks can show up physical problems (heart, brain etc) that might be of concern. I'm pregnant again now, and combined test was 1:3000 (I'm now 40). So again, each pregnancy is different.

So one option might be to agree to leave it until later in the pregnancy and if anything is worrying you then, get an amnio. Can you find out stats for mc with amnio/CVS at the hospital you would consider using?

It's very difficult to consider how such things will affect your other children. I work with someone whose 3rd child has Downs and she feels that he has brought much happiness to her family. However she is also very much supported by her DH. Perhaps you need to agree to continue for now, see what will be with later scans, and try to unpick any fears you have if things aren't as your DH says, 'normal'...

Wishing you all the best, it sounds like a very tricky situation. xx

Thanks NMum. So very sorry to hear of your loss, but glad to hear things are looking good for the new pg. At the moment my head is full of worst-case scenarios and I'm more worried about m/cing again than anything else. I'm going to find out more about the combined test options and what it will actually tell me.

I'm sorry you find yourself in this situation.

I think Numptymum is right - that your dh needs to understand that doing the testing doesn't mean you necessarily get a healthy child. There are a myriad of things that don't show on the scans or could occur during the birth. I think he needs to explore his fears and feelings around this - what happens if despite the testing he gets a child that's 'not normal'. I realise it's bit late in the day for this and it doesn't address your testing issue. Good luck with your difficult decision.

I have a child with ds and the living proof of every day life - my other two are in no way adversely affected by their sister. Your dh also needs to recognise that there are a number of conditions that are not indicated by either CVS or nuchal translucency that have a greater impact on the family.

Does your dh know anyone with ds or anyone who has a family member with ds? does he realise that children with ds attend mainstream schools, play sport, can read, write, walk, play, and may have very little developmental delay. They are able to live relatively independently - marry even??

First of all congrats on your pregnancy!

I feel the need to play devils advocate (don't know why really as along with eidsvold one of my 3 children has ds). I feel as though you both need to have a long private chat about how you both feel, maybe once the dc's are asleep and try to calmly come up with a plan you both agree on. I just worry that if (god forbid) your baby had diagnosed disability at birth (that could have been screened for) your relationship would be destroyed and therefore have a massive impact on that of all of you dc's.

I think if you could decide the plan for the preg together it would mean that no-one would be to 'blame' if something went wrong. Even the stress of this issue isn't healthy of you and if something went wrong early on you may feel this stress contributed in a way.

I know i have waffled, but i hope you get my drift. I hope you go on to have a lovely healthy preg and have no problems.

For what it's worth in my ds's class there is a little boy who has no genetic or anatomically diagnosed disability but has more special needs than him!

Courgette, my DH has the same attitude. it's really hard isn't it? I can't advise you, but can only tell you what I have done, and was the right decision for me.

I chose not to have any screening/routine scans, on the ground that termination is not something I would EVER consider, even if it cost me my marriage. The thing is with screening is that you can't "undo" the answers is they are not what you want, and then you have to decide what you are doing with the info.

I am sure you will get some other advice here which will be very well thought out and I hope you and your DH can come to a choice you are both happy with.

Look at this as a series of choices.

You don't have CVS:
baby fine - all fine
Baby has some disability - your DH may or may not disappear

You do have CVS:
baby fine - all fine
some problem - one of the few disabilitis identifiable by CVS - you will be v v unwilling to terminate, in which case DH may or may not disappear, or if you do terminate you may resent DH so much that all not fine.

So, in the long run, if you would not terminate whatever the result, there is no advantage in having CVS.

I don't know how you deal with your DH. But apart from anything else he is very ignorant and ill-informed: of all the disabilities that could affect famly life to the extent that it would impact other children, DS must be way, way down the list, or not on it at all. A child with severe autism, or one with health problems that required long hospital stays thoughout childood or chronic ill-health would be far more challenging. And not detectable by CVS.

hmmm what is "normal"?

maybe sit with DH and turn it round: - if one of our existing children got v ill or developed a disability eg thru an accident - would you give them up because you dont want to deal with it?

if i or you developed illness/disability would i/you walk away?

not saying the answer to walk away is wrong...everyone decides and has their limits....but maybe putting it into perspective might help both of you - as it sounds like you have already decided baby is baby is here to stay....

it is like the conversation - what do you want boy or girl
"i dont mind so long as is healthy"

next quetion should be:
"and if it isnt healthy - what would you do?" what in reality are the options if there is something wrong (whether fixable condition or life long condition) - give up for adoption?

my son had odd scans - possible hints at problems - i didnt have cvs/amnio...he doesnt have ds...he does have autism...recently diagnosed with a syndrome not diagnossable on current amnio/cvs testing . life is strange. but life is ok.

Oh dear it sounds as if you're in a similar tangle to me, though DH is being more supportive, he has unfortunately voiced a critical opinion that will stay with me.

I was given a 1 in 5 risk of DS (I'm 39, bad bloods and nuchal of 2.85). Our intial reaction was what will be will be. Don't want a CVS as we wouldn't terminate.

I'm since driving myself crazy not knowing and wondering if it is right to knowingly bring someone who is disadvantaged in our far less than perfect society which hasn't quite got it's act together.

I do want a CVS to put all the question out of my head but then I don't want one as it will force a decision one way or the other.

To terminate I think, for me, would be the stuff of nightmares but DH has said if he knew if it was Down's his choice would be to terminate (which is going to stay with me forever) but he would happy to go ahead with the pregnancy if I wanted to (which is very supportive).

So, in effect, to know would put the weight of a decision that would effect the baby & the whole family on my shoulders and that feels too big. For me, I would be delighted with whoever came along I think but I can't ignore the fact that it would effect other people and that adults with Down's Syndrome are struggling to get the services they need, which is just stressful for everyone. Is it ok to knowingly throw someone in to that?

I've mentally gone through the termination and the thought of it has made me shake.

What to do. Help, I'm in knots.

What did you decide in the end?

How awful for you.Luckily my DH and I were in agreement that I wouldn't have an amnio or CVS (had my dds in my 40's),but if he had been pushing for me to terminate a downs pregnancy-well I think I would have resented him forever tbh.A very close friend of mine has a DP who would have wanted to terminate and she told him that she'd had the blood tests and it was all fine (she didn't have any tests).Their child didn't have downs,she told her DP after the baby was born that she had lied and he was pretty angry but not for long.I wouldn't have lied but I would have found it very difficult and upsetting.I think if his feelings are that strong then maybe he shouldn't have been happily getting you pregnant,rather than expecting you to have an abortion if things aren't going to plan.

It is rather difficult but he has stressed that he is fine either way and doesn't think that there's a wrong decision to be made. He's just saying what he would do if the decision only involved him - because he feels rather black & white about things and that he can't relate to the foetus as an actual child until it's born. I do understand what he's staying.

Sorry to put another negative in here, but when they say '1 in 5 for Down's' what they often mean is 1 in 5 for a chromosomal abnormality. We were high risk, and they thought it was most likely Down's. Then this week we got a diagnosis of full Trisomy 9 - which is fatal. Children with mosaicism of this trisomy can survive but with much more substantial disabilities than Down's. I'm just pointing out that diagnostic tests tell you what is going on, its not just a question of Down's or not.

Oh I'm sorry you've had that news. How very difficult.
I did ask whether my profile indicated that we should do a cvs for that reason but they did't really say anything other than if we want to know about downs. What was your profile if you don't mind me asking? also when is the limit for a surgical termination? The thought of a medical one terrifies me but I would consider termination if there was a serious
problem.

Hi Brownpaper, sorry for the bluntness of my post, I'm pretty numb at the moment and not communicating well.

We saw a cystic hygroma on the scan which can indicate a range of problems, but they told us Down's was the most likely given my age (in younger women they tend to think of Turner's). We declined bloods because the hygroma was worrying enough we needed to know what was causing it. So we were never given formal risks. OUr initial CVS results were clear for Trisomy's 21, 16 and 18 and for Turners. But our full results showed the bad news.

But it is my understanding that the screening tests (scans and bloods) don't test for particular abnormalities, just the risk of an abnormality. You might want to check with ARC about this though - I wouldn't want to mislead you.

As for the surgical cut off, its 13 weeks on the NHS, this is because of the equipment they use, they can refer you to private services which can do them till 19 weeks. In the end we are going for a medical process, which I thought I couldn't face, but in the end it feels like the right option for dealing with our grief.

Best of luck to you, whatever you decide, and do get in touch with ARC - they've been a great help to me.

I really am so sorry. What an awful time for you. Thank you so much for helping me when you've got enough on your own plate.

Please take care of yourself xxx

WS so very sorry to hear of what you are going through. I hope you are getting all the support you need and that you can start the healing process very soon.

BrownPaper am glad to hear that your partner is at least supportive of your decision and best of luck with your pg.

In the end I had the non-invasive screening because I felt it would at least give me - and obviously dh - some information to go on. Just got the results back today, nuchal 1.34 mm, risk of T21 1:2575 and age-based risk 1:156, "normal". TBH the statistics mean nothing to me but seeing the little bean leaping about on the screen meant everything.

Thanks again to everyone for all your helpful input and suggestions.