Very sensitive subject - I think DH and I now have v. different ideas nuchal fold and outcomes. Long post.

[Jackaroo]

I am about to have my nuchal fold/nasal bone/ blood test stuff done @ 12 weeks. Last time we had it all done, I didn't even actually think about why it was happening, or what we would do with the outcome if it is anything less than great. I assumed we would terminate. We were lucky, despite being older I had the risk of a 15 year old or something, so didn't have to think about it.

3 years on, I'm biologically far further over the hill.

DH had an uncle who had Down Syndrome, and lived well past middle age, but in a home, and back with family every Sunday (this was until about 10 years ago). Anyway DH grew up spending a lot of time with him.

As a result, he is adamant that he wouldn't want to bring a child into the world with similar problems. I take what he says seriously because he is the kindest most generous person I've ever met, so he's not someone who would treat differently anyone else's child with SN, for example. And of course, he is entitled to his own feelings, and to express them, and I've always known this.

Having been pg.,had a child etc etc, I don't feel I could now terminate any pg., just not have a child I've already been pg. with for 3/4 months.

I know I'm putting the cart before the horse, and shouldn't worry yet, but I'm wondering if I even want a test if I don't want the consequences of knowing?

and should I say something to DH now, rather than dropping a bombshell in a week or so?

Any thoughts? Similar experiences?

Oh dear, I don't think I can offer much advice, never really discussed this with dh. but no one can make you terminate a pregnancy.

Try not to put much thought into it all until you have your results. It may all be academic

sorry, i see you're wondering if you should have the test. I would. If you don't you will worry/discuss/stress over this for the rest of your pg. Have it, you will most likely find there is no need to worry.

I think you should talk about it togther again - I had a nuchal fold test last summer and the results were not good - once you find your self in that situation you tend to find (well we did) that events take over your booked for the next set of tests (CVS or amio) to get a definitive result(obviously you can choose whether to have these or not) and then its all a bit of a roller coaster. Its more than likley that everything will be fine but I wish we had discussed it more before we had the nuchal fold test rather than have left it until we were under pressure with a poor result/further testing - ultimtaley though we came to a decision about the pregnancy that we were both happy with.

Dp was also adamant that he was not able to raise a child dependent for life.
Both. Nuchals were fine.
I did say I appreciate your POV. But cannot guarantee I will feel the same way.
as it happened our dd was born with noonan syndrome.
Luckily not resulting in major issues well not now anyhow.
THis changed a lot for him and in our 2nd preg he was a lot less adamant.
But you are worrying with needing too
Cross that bridge when you need to.
Good luck

I think that's part of what worries me, that we'll get caught up in a rollercoaster of tests, and I'll be in teh middle of an amnio with a % risk of m/c, when I don't actually care if there is anything to find...

and as PF said, that's exactly why I'm wondering whether to mention it now.

ds is only 1 sn.
your child could have cf, or cp, or autism, or be blind or have epilepsy or be deaf or have learning difficulties, or be born with no disability but have an accident or contract a virus that leaves them with a disability.

Your husband can't control that and I know that's scary for him.

Is it just ds that he is 'scared' of, or any disability? What would he do if you had a child with a disability that you couldn't check for in advance? If he'd love and keep it - why is he so anti ds?

Ask him what would happen if the test came back fine, but the child was born with a different disability - adoption? If he'd say that the child was there so he'd love it/deal with it/care for it/whatever...then why the difference?

I'm not meaning to bash him, but I think you should challenge him, and he should challenge himself.

I think that's part of it hecate - I KNOW there are millions of SNs of varying types and degrees, and I know that he would just deal with it (whether I would is another matter, I sometimes have problems functioning with DS as it is)....I see kids at school all the time, with very mild versions of autism for example, and still it's very very distressing for parents/exhausting/all consuming etc etc. But we'd just get on with it.

I think it is that very specific thing that you can test for DS, so make the most of that, and he has personal experience of that syndrome, growing up.

He wouldn't abandon us, and would certainly step up and get on with it, but I think he feels that knowing what it's like, and given that at this stage it's not a baby yet (to him), it is an option that he would take.

Actually, writing that, I'm wondering if I should talk to him, because hell, he might have changed too....? He was very excited when we had a scan a couple of weeks ago after a bit of a problem.

Hecate, you were quite harsh, but it's helpful.

hecate thank you. My DH were having this conversation last night, my scan is in two weeks. I am very much of the frame of mind that I will not terminate this pregnancy for anything. DH was on the fence. I have emailed him your logic and hopefully it will help him!

His association with a DS person in the past is what's colouring his judgement.

I, too, have a DS uncle. He was never taught to read, or write or to function as an independant person (which he could have) and, accordingly, he can be quite frustrated because his mental ability is better than others have assumed. He also has ot live in a 'home' and is only allowed out into supervised care, but if he had been raised differently, that wouldn't neccesarily be the case (as Hecate rightly says, who knows what will happen)

But, my uncle was raised 50 years ago in rural Ireland. TImes and attitudes have changed.

My DH, previous to meeting me, had a son who died of a genetic disorder. I was offered genetic testing at 36 weeks PG beyond belief! Did anyone REALLY think I would consider terminating my baby at that point????????????? So what, the baby MIGHT be life limited... A chance I am prepared to take.

GO with your gut instinct... I hope you can get through to him.

(and, yes, I will add, it IS legal to terminate at 36Weeks, if there is serious abnormaility that will mean the baby is unlikely to survive.. Sorry for hijack, but I still find it quite unbelieveable)

That just sounds bizarre - why that late? Why can't they test at, I don't nkow, ANY time before then?????

Right, I'll let you know how I get on......

Oh, it's a long story... But, basically it's how long it took to get an appointment on the NHS.

To be fair, I had my baby privately and could have had the testing privately, but chose not to do it.

I hope you get on OK ,

It?s difficult. If you have experience of something, then you form your opinions based on that experience. IMO your dh?s greatest reasoning for not wanting a baby with DS is because his experiences of DS have not been positive ones.

Times and attitudes have changed now, and children with downs are no longer put away in homes or segregated from society. If your dh?s uncle had been born 50 years later, or even to a different family, his life may have been very different to the way it?s turned out. One person with a disability does not make that disability, everyone is different, and even Downs has a spectrum, and not all babies born with downs will have the same capabilities/problems.

Also, there are lots of other disabilities that cannot be tested for, disabilities such as autism that aren?t even apparent at birth but don?t show until the baby is older. He would have no control over any of those, and presumably wouldn?t choose to get rid of an existing child that turned out to be disabled?

I personally chose not to have any testing at all. There was a 50% chance that any children I had would be visually impaired, and this could not be tested for before birth. And with anything else I knew that termination would never be an option for me, so I saw no point in putting myself through the trauma of testing, and the potential pressure from my family if I turned out to be carrying a baby with a disability. Even if my dh had felt differently to me I would not have put myself through the tests, because IMO if you feel strongly enough that you wouldn?t terminate, then putting yourself into a situation where others might feel differently and want to apply pressure would only make things worse.

There is not a man alive who could force me to terminate a pregnancy. It is your pregnancy, your baby, and if you don?t want testing, then don?t have it.

was going to post something v v similar to Hecate

also, even if your nuchal result and bloods are low risk, that is not the same as no risk.

you have , IMO, the final say, as it is your body and you are carrying the baby.

it is definitely a good thing to discuss all this before you are pregnant and in tha position.

I am sorry, it was not my intention to be harsh to you.

Thanks for all the input - it's made a huge difference.
Hecate, absolutely no need to apologise, what I was saying was that it needed to be that stark really for me to be able to see clearly, which is why it was helpful!

It was a weird ocnversation. His final response was that he didn't feel strongly one way or the other - which I know means that he thinks I should make the final decision. Which on the one hand is great in terms of, yes, I know, my body, my choice not to terminate, BUT...leaves me wondering what he "actually" thinks. Because I sure as hack don't want to find out after the fact.

He may be more forthcoming if we're actually in the middle of the situation, well he'll have to be, because I cannot do it all by myself and then find he resents whatever decision I made.

Anyway, definitely opened the lines and all that, thank you for your support.........

could you provide evidence serious one about terminating after 24 weeks?
I ask this as a friend who had missed pre natal testing due to working abroad found out at 26 weeks she was carrying a baby with no chance of survival due to severe heart abnormalities. Baby would not survive more than an hour after birth and was growth impaired.
She was advised that the time limit for terminating had passed but that they could induce her anytime after 28 weeks.
She had a breakdown afterwards as had traumatic birth complications, had to be operated on and never saw her baby alive.
Where is the evidence that termination up to 36 weeks is an option?

piffle it is the law.
I found this article which may give you some context:
www.ingentaconnect.com/content/bsc/bjo/2006/00000113/00000012/art00009

it certainly is legal to terminate up to term for a health condition. I work in nhs maternity and have known of baby who was terminiated at 34 weeks for a syndrome.

OP It is very hard I think.My mum had a sister with very severe brain damage and severe LD and I remember her saying that if she had had an amnio and her baby had sn ahe would have terminated the pg.The ironic thing is my dd was born a seemingly "normal" baby but has sn.I think that your dh is looking at his relatives experience and is probably scared of thinking what would happen if his own dc had sn.This is understandable but things HAVE moved on,thankfully,and there is a lot of support out there in the early years..But his experience is his experience and will be naturally colouring his judgement.Yes it is hard having a child with sn sometimes but it is also hard having a child full stop sometimes IYKWIM?.I will be honest and say that my BIG fear as a parent of a sn child is what will happen to them when I die but in terms of loving your child you love them with your heart and soul because they are your child,if that makes sense?I think you need to have a chat about what his worst fears are and work it through together.Maybe show him this thread?I can see it from both sides.xxxAs others have said at the moment try to enjoy your pg and cross that particular bridge if it comes to it.Will stop rambling now xxx

Jackaroo; I have been in pretty much the same situation as I am a genetic carrier of DS,.... I didnt meet my dh until later in life and we started ttc both agreeing not to bring a disadvantaged child into the world, but by the time I had suffered 5 early mcs and then lost a dd at 17wks gestation just a week following amniocentisis (due to previously undiagnosed blood clotting disorder)my feelings on the subject had completely changed ...dhs feelings had not changed despite me using pretty much Hecates argument..his attitude was if something unavoidable happened we would cope with it but if we could avoid it we should. I agreed to the nuchal (which was a good one but not necessarily acurate with my condition)as it was non invasive but could not face another amnio (booked and cancelled 3!)and knew, especially after losing dd, that I could never terminate (Incidentally I was still being offered amnios and the option to terminate at 32 weeks). We were lucky, ds is perfect but dh was so worried throughout the pg that he wont agree to trying for another unless I agree to testing and possible termination, so we have agreed to remaining a one child family. I hope you manage to bring your dh round to your way of thinking

The expectations for people with DS have changed enormously in the lifetime of your dh's uncle. It's just not viewed in the same way (for started children with DS are now educated).

Can also say if you did go ahead and happened have a child with DS (which is unlikely!) is it very likely that faced with the reality of his baby your dh wouldn't actually care. That is the most usual response (mythical imaginary baby with DS being very different from my baby held in my arms crying for me with DS). When you have a child with SN you find that some sort of primeval protective instinct tends to kick in as well

As you are the one that would have to go through a termination I think it has to be your decision. If you don't want a termination and have one for your dh then I think it would be the death of any relationship- or incredibly difficult.

Hecates point is a good one. My son is severely autistic- we had a very normal first year and a half. He is far far more disabled than anyone I've met to date with DS. They're quite simply streets ahead of him. My main concern with DS would be the potential health problems not the condition.

Good luck, but I think in a way your dh is right to say he doesn't mind and leave it up to you. Sometimes you can't come to total agreement on this sort of issue, and in that case I think the mother should make the choice. I know that doesn't go down well on here sometimes but the reality is if a child has SN the mother takes on most of the extra responsibility, if you decide on a termination the mother has to go through it. So it has to be the mother's choice.

Thanks JimJames - I really panicked when I saw you'd written something, because of the MMR thread

I do understand your last para., and agree, theoretically, but in the same way that being coerced (I'm sure it's possible?) into a termination would be a death knell, equally I don't want DH to feel he has to be stoic, for it all to fall apart retrospectively.

Anyway, as we have nearly all been saying, far worse can come out of the blue at you, and you don't usually down sticks and walk off (certainly not people like DH anyway)...

I have a scan tomorrow. Wish me luck.

Jimjams!

the tests will also rule in/out the other (more serious) trisomies so this isn't just about DS