I find it sooo hard when people talk about nuchals and CVS's and amnios etc

[TeeCee]

I really try not to. I know some people need to know. Blimey with DD2 I found myself having tests, something I had never thought I'd do and found very uncomfortable, but a situation I found myself in all the same. I went through hell with all of that. Cried buckets, felt like shit, felt such a terrible person. It was the hardest thing int he world when I realised DP desperatley had to know.

I just feel really, really uncomforatble when people talk about checking the nuchal fold and booking in for a CVS etc. I'm sure they have thought loads about why they are testing etc and have made an informed decision about why and what they'll do and why they would do whatt hey would do etc, but sometimes the matter of fact way these appointments are discussed, it feels like they are discussing nothing more important than a hairdressing or pedicure appointment.

All these people that have a CVS or an amnio booked, are they all doing it becasue they need to know either way or are they doing because they would all abort if the child had Down's? I know you can't answer that, and it's none of my business anyway etc etc etc, but it's what goes through my head everytime.

How can I be a mother to a child with Down's and not be slightly pained by all the seemingly casual talk of CVS's etc?

Sorry, just needed to offload as feel quite sad about it all. It's the hormones, ignore me if you like, I won't mind!

[TeeCee]

Oh Fio thanks. I worried I was being a bit too sensitive. It just seems to be discussed in such a casual way. I put my DD had DS for 2 reasons next to my name. 1 so if people were concerend they might ask me questions and I might be able to help and 2 becuase I thought it might make people more aware and possibly a little sensitive. I think I might stay away till well after that part of everyones lives is over iykwim. Or maybe I'll say something, in a very gentle way, expalin why I'll be back after everyones week 17 or something?

It just makes me sad that sometimes people seem to get on the testing conveyor belt without really thinking it through all the way to the end.


PS - Don't think this will be seen by anyone as it appears from a few comments in other areas that people don't click on SN's anymore.

[alittlebitshy]

Lots of sympathy teecee.
It does amaze me the way people just have such tests done. We never did with dd and i wouldn't again. But i was talking to a friend who said that her sil had gone up to her parents area of the country just so she could have a test done (presumably she wasn't offred one at her hospital). The woman in question is not even in the over 35 age category and it just amazed me that she went to such lengths.

maybe i'm not making sense here but I just wanted to say that while I am not coming from the same reasons you are, it it gobsmacking the way people just have(IMO) such tests as easily as they did the initial pg test....

[coppertop]

I think in some areas it's presumed that all pregnant women will want these tests and so it does become a bit like a conveyor belt. I remember the odd looks I got from the hospital MWs when I opted out of the triple test with ds2. You'd have thought I'd just opted out of ante-natal care altogether.

TeeCee

[Booboobedoo]

But I had a nuchal because I wanted to see my baby on TV!

DH and and I had already discussed it and decided that even if I appeared to be high risk we still wouldn't have a CVS, as we would still want our potentially Downs Baby, and wouldn't consider the 1% miscarriage risk worth taking. (DH used to work with Downs Adults).

A friend of mine lost her baby at 18 weeks. He was a terribly poorly little boy, and she has decided that if she's lucky enough to get pregnant again she would have the CVS to 'arm' herself as it were.

There must be manifold reasons for women to take these tests.

[Jimjams2]

I do know what you mean TeeCee. I won't say more on here, but I do know what you mean.

[TeeCee]

I didn't get booked into the hospital until I chased becuase my GP letter went straight up to the Fetal Testing Worry Centre (!) rather than into the bookings dept. The head of Fetal Care rang me and spoke about testing and I said 'look I'm already considered high risk because I happen to have a child who has Down's syndrome so whatever test you give me I'm starting out on a negative and anyway, all you can do is tell me that my baby may or may not have Down's, Edwards or X (can't remebner the other one) and she said yes that's true. ! You have to laugh really I spose.

It is good that women have a choice I just wish that people didn't treat you like a freak if you don't want to be tested. People should say 'so would you like to have a nuchal and if so and the result comes back as high risk, these would be your next options and you it's worth thinking about that and how far you'd be prepared to go and why.'

Everything I got through from the hospital seemed to have DOWN'S SYNDROME stamped across the top.

[berolina]

TC I'm not in your position but I feel the same. More or less the first thing my gyn did at my last appointment after confirmation of due date etc. was to ask me if I wanted an amnio My friend with a ds with DS is asked a couple of times a month by people whether she 'had any tests'. I find it so sad and discouraging. The 'as long as it's healthy' thing is even starting to put me on edge. After 3 mcs you just feel 'as long as it makes it'.
Fio, I know exactly what you mean about people thinking they're immune.
(it's FiT under her old name, btw)

[homemama]

Teecee, I fully understand that as a mother of a child with DS, these decisions upset you. However, I just wanted to explain why I had a nuchal scan in each of my pregnancies. I can honestly say that hand on heart we would have continued with the pregnancy regardless of what showed up on the scan. However, birth is such an emotional time that I didn't want my joy at delivering a live baby tempered by the discovery that my child had a disability. I would have wanted time to prepare myself and perhaps to grieve (so sorry if that offends).
I would also very importantly want to share the scan news with close family and friends so that when my beautiful baby was born all everyone would feel was joy and I wouldn't be greeted with shock, sadness or worse still pity.

Sorry if I'm intruding on a SN thread, just wanted to share my reasons.

[berolina]

Been thinking about this some more. I think it's part of what I'd call a trend towards 'pregnancy insurance' - the desire to protect oneself from anything perceived as 'risk'. Presented as such, I think it appears to many as the 'done' thing. FWIW, when I explained to my gyn that we would certainly not terminate in the case of DS and weren't willing to carry the mc risk, he was absolutely fine about that - more than fine - he indicated that he approved very much of that position. I just assume he#s very used to seeing patients who want that exclusion of all 'risk'.
homemama, I absolutely respect your motivation. Sadly I think many don't share it - my friend told me that in Germany, 90% of pregnancies with a prenatal diagnosis of DS are terminated

[Woooozle100]

It isn't just about looking for Down's though.

I have very mixed views on the subject. I have a balanced translocation which means I am about a 50/50 risk for having an unbalanced translocation pregnancy - basically a baby with 2 chromosome abnormalities - a deletion and a duplication. My DD has this unbalanced translocation. I've been told by various Genetics Counsellors that my daughter's existence is somewhat suprising; in theory her unusual chromosomes are 'incompatible with life'. At the moment she is doing very well and is relatively healthy. However I do not take anything for granted.

When I was pregnant with her, I shunned all tests / bloodwork. I had no idea about the translocation and had the attitude that if something was wrong - then so what? That's the card we have been dealt. Its not the end of the world. I was pretty ignorant of all the weird and rare chromosome abnormalities. I knew of Down Syndrome and wasn't too fazed or frightened by this.
I was aware that my mother had had a stillbirth prior to my birth and that baby had multiple abnormalities - double sets of organs; organs missing; a spine that was completely fused together with no gaps in it at all - v staggering that my mother made it to term and hadn't mc. 30 odd years ago, this was put down to coming into contact with German measles. It was only after my dd's diagnosis that all this came to light. My mother and I have the balanced translocation. We have both also had multiple mc.

So my stand on the matter has know changed. I will be having CVS and I would terminate an unbalanced pregnancy. Its a profoundly upsetting thought because on some level it is tantamount to saying I would terminate my daughter. I certainly love her deeply and such a thought appalls me. However, I do not want to risk having the trauma of a late MC / SB or neonatal death and I certainly do not wish to detract from my DD's complex care by having another child with potentially far greater needs to also contend with. I would be sleeping in a hospital campbed most weeks. I could be having to organise two funerals. It is not something I am prepared to risk but that doesn't mean I am casual about it IYSWIM

[wannaBeWhateverIWannaBe]

I think that there are just too many tests available. Before scans and triple tests and amnio?s and CVS were available, people gave birth to babies with disabilities and medical conditions, and they just had to get on with it.

But now we have tests for this, and tests for that, and the option to terminate if a baby doesn?t conform to what society considers to be normal. And yes on the up side we have scans so we can see our baby as it is developing, but let?s not kid ourselves here, scans aren?t offered to give expectant parents the chance to see their lovely baby, they?re offered to check whether there are any abnormalities, and to give those expectant parents the chance to terminate the pregnancy if they feel it?s necessary.

I can understand why someone who already has a child with a disability would want to know whether the child they are carrying will also have that condition, but I cannot understand why someone who does not have a disabled child has the need to know if they have no intentions of terminating the pregnancy in the event of an abnormality. And I think the phrase ?because we want to prepare for having a child with downs? is extremely patronising tbh, and I?ve seen that phrase used more than once on here and heard it in rl.

What is there to prepare for? We don?t say ?I want to prepare for having a child that has no disabilities? so why the need to ?prepare? for one that does? Ultimately, every child is different, and no amount of reading, and research, and talking to parents of disabled children, is going to prepare you for the child that you are going to have.

Sorry if this offends anyone.

[Booboobedoo]

Wannabe, what on earth do you mean 'what is there to prepare for'? If I was told I had a high risk of having a child with Downs I would want to research the condition further and find out in advance what help I and my child would be likely to receive. I would also want to talk to parents who already had children with Downs about their experiences.

What an odd, blinkered take on it.

I think you're the one being patronising frankly. Pregnancy is a worrying time, and one does what one can to feel 'in control'.

[homemama]

Well I didn't use that phrase and I find it frustrating that you suggest that my motives are frivolous.

I simply posted to say to TC, 'don't be too sad, not everyone who has a nuchal intends to terminate at bad news. Sometimes we just want to prepare for what could be a different and perhaps more difficult (but no less joyous) parenting experience.'

[geekgrrl]

I know what you mean TC

(also don't think there's anything wrong at all with people wanting to be prepared for having a baby that's not your average run-of-the-mill sort - I wish I'd been prepared and actually able to enjoy dd2's newborn time, rather than being a sobbing wreck)

the whole conveyor belt feeling, and the people thus appear so blase about 'getting rid of it' if the foetus isn't up to scratch is rather unpleasant.

[OttergavebirthonValentines]

Teecee i really understand where you are coming from
My only close friend who had a child with Downs Syndrome said that she later wished she had tested and could have then acted upon that decision.
She loved her child a lot but said if she had her time again she may have terminated. Sadly she has since died young but her words stay with me.
I do see how hard it must be for you

[evenhope]

I had an amnio but it was by no means casual. My AFP bloods came back with 1:24 risk of Downs Syndrome and my MW came to see me in a panic at such "high risk". That was Wednesday. I was immediately given an appointment with a nurse for genetic counselling for the Friday and an amnio booked for the following Monday.

I didn't want to do it at all but my DH did. 2 of our kids have mild SN conditions, one of which involved a lot of physical handling when he was younger (DH used to have to literally sit on him when he went off on one). That was fine when we were in our 30s and physically fit but we are now 43 and 45. By the time this one gets to that stage DH will be in his 50s, and there is nothing to say that DS cannot co-exist with the problems the others have. DH was scared we could end up with a profoundly disabled child we couldn't physically handle. For that reason he was adamant he did not want to have a child with DS and insisted on the amnio. We did spend hours agonising over the decision, which was not taken lightly.

I realise that as a mother with a child with DS this sort of attitude is hard for you to understand but we are all different, and we had to consider the effect this scenario would have on our teenage sons. Unfortunately we know a family with a very severely affected 15 year old boy who has no speech, is violent, doubly incontinent and a mental age of 2. He was in the back of both our minds when we agreed to the amnio.

[Blu]

Big hugs, TeeCee.

The hugs are unconditional....but each person travels their own journey, and you don't have to go the same route as them...or even look in their photograph album - not pictures of your journey, pictures from a different place. You know this...look after yourself, nothing takes away the preciousness of your own children. More hugs.

[wannaBeWhateverIWannaBe]

Apologies if I caused offence. I just feel that people seem to view child with disability vs healthy baby as a bit of a black and white issue sometimes, and that people do say that they would want to ?prepare? for having a baby with ds without even really thinking it through. After all when having an amnio/cvs/nuchal scan do people really consider that their result may come back as high risk? I think if a result is high risk then of course you would then want to know as the not knowing would haunt you throughout the pregnancy, but so often people say these things ?I want to prepare? or ?I would have a termination if my baby has downs? before they?ve even had the tests and have any idea whether there is a problem.

And there are so many other disabilities that cannot be tested for. Debilitating, sometimes life-shortening disabilities, and yet rarely do people wonder whether their child will be affected by such a disability, and IMO the reason for that is because there is no way of knowing. But because there are tests for downs, people have this need to know. But not having downs doesn?t mean not being disabled. That is why I have issue with needing to ?prepare?.

Again, apologies if I have caused offence, that was never my intention.

[Blu]

Wannabe - I understand a lot of what you are saying...i don't think it is offensive at all, and I wonder, sometimes, when i see people approaching the 20 week scan as if it is nothing more than a fun day out to get a sneak preview of the baby.

I WAS grateful that I had the chance to find out about DS's leg before he was born (funny, though - I didn't want to know if he was a boy or a girl!), and that i had already spoken to the consultant, who gave me loads of confidence. For me, that was 'preparation' - and meant that in the flurry, chaos, sleeplessness and misery of prolonged confinement in the bloody post-natal ward (because he was on anti-biotics) I didn't need to find out about Ds's leg from the scaremongering crass paediatrician who stalked my bed like a raven ready to pick up his his next interesting 'case'! It meant I was thinking about my BABY not about finding out about his leg.

But there are so very many things that come with a child that are not detectable at any stage, even in babyhood....testing is a possibility. It's an opportunity posed in our modern world. It's the way we use it and the way we think of our babies, ourselves and what it all means that needs some attention, maybe.

[Davros]

Sorry, haven't read all of this.
Sorry you feel bad TC and I quite understand why you do. People are insensitive and things upset us no matter how hard we try not to let them.
As you know, I did have tests with DD and I would have terminated if Down's or any other detectable disability/illness etc had showed up.
I felt utterly justified as I knew only too well what it was like to look after a child with SNs, especially as DS was nearly 8 by then (so the cute quirky toddler was long behind us) and I had no other children, just the child with SNs. It doesn't mean I don't love him or don't want him but his life is hard and will get harder. It has made our life "unusual" although that is the least of my worries really. Also Fio is right, there are many, many conditions etc that can't be tested for, including DS's ASD so there is no absolute answer anyway.
I think you are right, a lot of people do seem to talk about it like its booking a hair appointment, maybe they don't mean to, maybe they really don't think? But a lot of people do make informed decisions and I hope I can think of myself as one of those. It mustn't be made difficult for people to choose testing or to talk about it, but it really mustn't be made difficult for people to choose not to test or to talk about it. When I meet people who have a child with DS I never assume they hadn't known as, in my view, they could very easily have known and chosen to go ahead.
It is hard when people seem to make light of something that is so important to you and so deep in your own functioning. If anyone says or does anything about DS (just giving him or me the eevils is enough) then I'm the first to react and the first to feel bad too.
Sorry, I'm sure this ramble doesn't help but hope you can feel better. These experiences come up like a kick in the teeth when you're least expecting it.