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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Downs-High risk-please advice........

78 replies

mum2oliver · 30/10/2006 16:44

Friend 30yrs old-1in 589 chance of having a downs.
Nucal tranluscency 2.2mm-this is normal.
Bio chemistry adjust was 1 in 297.

Combine adjust is 1 in 172.(combination of the above 3things)

Can anyone advice my friend on how they have cme up with this figure of 1 in 172 if all the other 3 are so high?
Can anyone explain anything about the test she has been offered for Friday?
She is 12 weeks so the flued is being taken from the placenta.Thanx

OP posts:

Are your children’s vaccines up to date?

Set a reminder

cathstirshercauldron · 31/10/2006 11:52

fairyjay can i CAT you?

bundle · 31/10/2006 11:56

That 5% chance of survival for an Edwards baby would mean a lot to some parents though, who would decide not to terminate (I know of a family who did this, and their baby died shortly after birth) so the decisions around the different trisomies are complex and I really don't feel I could judge anyone faced with such a decision.

bundle · 31/10/2006 12:02

geeekgirl, you have no evidence to show that she has not given any thought to it.

fairyjay, it's incredible that people still use that kind of language, good for you for putting them right.

TeeCee · 31/10/2006 12:03

Well I judge anyone who has gets back a high risk and automatically says 'ohh no, I couldn't have a Down's'. I judge them, yes I do, why shouldn't I? How could I not??? They judge people with Down's syndrome, obviously, and therefore they judge my daughter so I judge their misinformed prejudice.

Not saying that is the case here, I don't know enough to judge this mum.

foundintranslation · 31/10/2006 12:05

It makes me incredibly sad that children with DS are so often seen as some terrible calamity and talked about almost exclusively in terms of 'risk'.

Threads like this confirm me in my decision to stay away from AN testing (not pg atm btw). I know that I am risking carrying a child with a life-incompatible syndrome to term, but there are no certainties in pg and childbirth (as I know from miscarrying 3 times).

TeeCee · 31/10/2006 12:08

Thank God that pepole like you exist Foundintranslation.
xx

bundle · 31/10/2006 12:08

TC, most people I've spoken to re: Edwards broadly accepted my decision, re: termination, because they saw the baby's prospects as v poor, and indeed they are for most children with the condition. but for some people my take on Edwards is simply unacceptable, because they view life as so sacred that they cannot even consider termination..all I'm saying is people draw lines in different places, and for better or worse decide for themselves.

bundle · 31/10/2006 12:11

TC, this woman is not judging your daughter, or people like her, in the same way that I wasn't judging anyone born with Edwards Syndrome when I made my decision...I decided on the facts which I found out about it, for myself, and my family.

foundintranslation · 31/10/2006 12:15

bundle · 31/10/2006 12:16

FIT, I agree it's terribly sad

TeeCee · 31/10/2006 12:18

Bundle - last time as I'm off again after this.

Can't compare your decision re Edwards with someone who seems to be saying 'oh just found out I could be carrying a Down's, couldn't deal with that'. Totally, totally different. This is about Down's syndrome, not about Edwards, they are poles apart imo.

I'm NOT saying this woman who neither of us know, is judging my DD. I'm saying that anyone who rules out having a child with Down's syndrome, without knowing why they are ruling it out must have preconceived ideas on what having DS means, and therefore they judge people with DS. I judge those people. End of.

bundle · 31/10/2006 12:22

TC, in your opinion they are poles apart, exactly. you have an opinion and are entitled to it. everyone is.

TeeCee · 31/10/2006 12:27

I thought I was being as fair and as agreeable as I possibly could but it seems there is a word or line in every post I type that you pick up on so I'm off again, I can't be bothered.

geekgrrl · 31/10/2006 12:29

oh ffs bundle - anyone who doesn't think they're poles apart needs to read up on the facts.

people with DS - usually learn to read & write, most live full, semi-indepent lives as adults, some get married, most have jobs, life expectancy close to normal.

people with ES - vast majority die before first birthday. Those that survive have profound & multiple disabilities and serious health issues. Survival into teens virtually unheard of.

I really don't think ES has a place in this discussion about DS and prenatal diagnosis.

TeeCee · 31/10/2006 12:32

Thanks for typing what I didn't have the energy to type Geekgrrl.
Feels like this is somesort of Bundle V TC debate and I didn't want it to turn into that.

bundle · 31/10/2006 12:39

it does have a place, geekgirl, because as has already been mentioned, some of the soft markers cross over into different trisomies, or other conditions (I had low risk for DS and spina bifida, but high risk for ES). and for some people - even MNers - choosing to give birth to a baby with Edwards syndrome is a perfectly acceptable and desirable thing to do, but I believed it wasn't for me.

TC, sorry I really didn't mean it to be a debate either, you know I respect you a lot, but feel that people who don't choose the same route as you can also gain support from MN.

Blu · 31/10/2006 12:49

C'mon, folks, Mum2oliver and her friend are clearly coming at something very new, unexpected news during pg is always confronting, and starting from inexperience, they are doing their best to find things out.

Of course it becomes personal for people who have children with DS in their lives, and I'm sur Mum2Oliver will understand that. She has offered an immediate and heartfelt apology for her phrase....can anyone point her to accurate information and a way to help her friend make a decision about weighing up the risk of cvs, and perhaps an up to date site giving clear simple facts about children with ds, so that her friend can have a proper think?

TeeCee · 31/10/2006 12:51

Absolutly they should get support Bundle, and I'd be there too support them, like dreamingofleau. She came on asking for advice and wanted to know as much as poss about DS and what it was like for parents of children with DS, same as myfairlady and others before her. Anyone who makes an informed decision, whatever the decision may be, deserves respect and support. No question. I'd never say any different. But I am saying that I couldn't support anyone who decides without thinking it through first, that they couldn't possibly have "a down's". I would judge that individual for terminating. I am not saying that is the case here, I don't know if it is or not.

Anyway Bundle, quick > and now I really must go, I'm not really using Mumsnet and I have a shed load of work I need to be doing.

suis · 31/10/2006 12:57

I have been reading this thread and now I feel I have to make comment.

I too have been given a high risk of down's syndrome with my pregnancy and have had to face what the poor lady in question is facing. Before making my own choices about further testing I did look into what it means to have have a child with down's syndrome and talked the whole thing through throughly with my partner about what we felt would be gained or risked by testing and what our feelings would be on the results. The choices we made, not to have further testing, were difficult and personal to us. I am however glad that we had the initial tests which gave us that choice to make.

I realise that what has been said on this board had clearly touched nerves with many people, esp those who already have children with DS, but I think it needs to be clear that the lady in question here has her own circumstances, opinions and feelings which none of us are aware of.

One thing I am sure of is that this is a difficult and upsetting time for anyone, whatever they decide to do and the lady needs advice and support in whatever she chooses, which certainly seems to be lacking from her healthcare providers if her friend is on here looking for answers. She does not need comments on how she must just be ill-informed if her choice is not to go ahead with the pregnancy.

People terminate pregnancies for lots and lots of reasons, and I for one would not tell anyone what their choices should be or what they should base them on.

My own choice is that if our baby has DS, then so be it, it's just who my baby is and I see no reason why that's a big problem, but that's my choice to make and the person here has her own choice to make.

On a further point I also want to say that I think comments on here warning against ante-natal testing are also personal choice, but it needs to be pointed out that testing can reveal problems that can be treated before the baby is born and give the best chance possible to the child, and for that reason I would always go ahead with the non-invasive tests. A friend of mine had no AN tests and had a son with Noonans syndrome and lived for just a year. She always regretted not having the tests done which could have given advance warning that someone was wrong.

TeeCee · 31/10/2006 12:58

Thanks and well said Blu. It's easy to get a bit carried away on these threads sometimes and you're right to pull it back round.

Can't remember the CVS facts and figures but the best site for info on Down's syndrome is the DSA

Piffle · 31/10/2006 13:02

If this is her first child then she is more likely to be afraid of an imperfect child than if she had already been a mum, where she would undoubtedly would have seen children with various "birth defects" around and about happily getting through ordinary lives.
I am one of those people who if he words Noonan Syndrome been confirmed in pregnancy I am quite sure my immediate reaction would been to have terminated, as I would have been sure I could not cope.
But the 4 yr old little girl currently asleep upstairs is quite possibly the biggest light of a mothers eye that ever walked. She has been less trouble, les work and more pure joy than my extremely gifted and talented academic 12 yr old son.
this time round we are getting extra special scans to help ds the syndrome - 20 weeks and no markers yet, but not so we could terminate, so we would know in advance.
It is a fraught decision though, like with many condition Downs Syndrome and other syndromes have varying degrees of how they affect each child. Very hard to predict in utero.
FWIw I would not have my daughter any other way, it's part of who she is, why she is and how she is.

bundle · 31/10/2006 13:02

I thought she wanted help about why the stats turned out the way they did, given the different numbers for each "test" (it depends on the weighting, methinks, but am very poor with numbers)

TeeCee · 31/10/2006 13:06

Crossed posts with you suis and wanted to say what a good post your was. Like I say it's easy to get carried away with the emotion of these threads, esp when they come one after the other soemtimes. I think those of us whose children have Down's syndrome are a bit defensive and we have picked up on a few points and we've run with them.

I apologise if I have lacked empathy in my posts, I tried not to judge this particular mum but in conversations with other mumsnetters I ended up ranting about 'a' parent out there who makes decisions like this without the full facts and perhaps that wasn't fair to do on this thread.

It just seemed like it was a bit black and white wiuth commetns like 'a down's' and "She is 100% sure that she would not cope with a child who has down syndrome". It seemed to me that a decision had already been made.

Original poster

mum2oliver · 31/10/2006 15:48

After reading all that I dont think I will be asking advice on here again about this subject!

Thanku for your support though bundle.

Oh yeah and sorry yet again about the phrasing.

OP posts:

Original poster

mum2oliver · 31/10/2006 15:49

Thanx blu too.x

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