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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

fairyjay · 31/10/2006 15:55

cathstirshercauldron

You can CAT me!

FioFio · 31/10/2006 16:33

This reply has been deleted

Message withdrawn

TeeCee · 31/10/2006 17:03

Mum2Oliver - when you say - "She is 100% sure that she would not cope with a child who has down syndrome." are you saying that she has decided to terminate if her baby does indeed have Down's syndrome?

If so, and that's what I took it to mean, you're bound to get some mums's asking if she has done loads of research etc. It's a very very sensitive topic isn't it.

Sorry if you're upset though.

binkacat · 31/10/2006 20:16

Personally if I was pregnant with a child with Down's I would not terminate. But then I wouldn't know either as I wouldn't have any blood tests, etc. But unfortunately a lot of people do have a very midinformed view of the quality of life that a child/person with Down's will have - they picure them been more handiapped than they usually are. I wish that there was more positive images in the media.

Does anyone with more knowledge than me perhaps recommend a website that might be useful for the OP's friend to have a look at? Some sort of Down's association that might be able to answer her questions, etc.

Original poster

mum2oliver · 31/10/2006 20:21

Thanku teecee,Im not upset and do understand but my questions were not adviced until much later and I was judged too quickly.No1 asked me anything.It is a new subject to me but not to my friend.She wouldnt cope and she knows she wouldnt.If it were myself I would look into it as much as possible.She is also considering how her partner feels too.She just knows herself and thiks it would not be fare on the child.She has a dd already and was never really very maternal.She went back to work when dd was 11 weeks on and dd went to a childminder.She will vertally be doing the same this time and knows that a child with ds would need so much more love and attention and to be placed with a childminder at such a young age would be unfare.

Please ask me questions if anyone wants to make a opinion.

OP posts:

Original poster

mum2oliver · 31/10/2006 20:44

My friend has been adviced to rest after the cvs and was given a leaflet but was not told anything about downs syndrome.Very bad.

OP posts:

eidsvold · 31/10/2006 21:43

my dd1 went into childcare at aged 1 - I took a year off - as she needed cardiac surgery but she went into full time nursery just after her first birthday - prior to us coming to Aus. She coped brilliantly as did the nursery. She now ( at 4) attends sn kindy and mainstream kindy and is doing fabulous. TC's little one has also been in nursery ( from memory) whilst tc worked. IN fact my dd1 is far more adaptable to new situations than my dd2. In terms of day to day care as babes - my dd1 was far easier.

I did point out the DSA uk website - I gave you statistics regarding risks of cvs. As well as other information that can be gained by a cvs - such as bundle pointed out - a diagnosis of Edwards.

eidsvold · 31/10/2006 21:47

mum2oliver that is the sad thing in all of this - and having been through some dodgy medical discussions and some from so called genetic counsellors - they seem to either know nothing or say nothing or know such wildly inaccurate information that it is mindblowing. Fwiw - I had a nts with my 3rd pregnancy and the counsellor sat there trying to tell me what living with down syndrome was like - whilst my dd1 sat there with me - I was stunned.

I finally had to stop her and bring up the fact that nts can indicate other conditions to which she told me I was wrong and it was only for indicating your chance of down syndrome!

I finally had to stop the conversation and leave the room - I was getting so mad at the rubbish ( and that is what it was) coming out of her mouth about down syndrome.

It saddens me at the lack of information about anything that your friends seems to have been given.

Hope all goes well for her.

Clary · 31/10/2006 23:12

mum2oliver my niece has DS and she was in childcare four days a week from the age of about 6mo IIRC.

She was totally fine.

In fact to echo piff's post, I would say she is a lot less trouble in general (she is a quiet, sweet, loving, easy-going little girl) than her NT and very bright (but sometimes whiny, fussy, demanding) younger brother.

I see that proves nothing, but just to give yr friend a bit of the other PoV.

cathstirshercauldron · 31/10/2006 23:22

imo mum2oliver's friend won't be thinking about the issue any further, i feel really strongly about termination though so am probably the wrong person to be reading all this stuff, this thread is making me feel quite tearful reading it but that's probably because i'm pg !!

cathstirshercauldron · 31/10/2006 23:25

i don't think all terminations are wrong or evil btw but i do think any that are not thought through by the mum smack of a lack of respect for human life and that makes me really sick probably turning this debate in a whole new direction now lol but i agree with TC about the need for proper research and careful thought, rather than snap judgements often based on ignorance. i know for a fact too that DS children do absolutely fine at nursery, that's how my dd met her friend! but again i feel that mum2oliver's friend wouldn't want to know about this..

geekgrrl · 01/11/2006 06:33

mum2oliver, sorry I got so cross yesterday. I really took it the wrong way and overreacted.

I hope your friend's CVS goes ok and she gets the result she is hoping for.

FWIW, my dd with DS attended a mainstream nursery from age 1 to starting school, without any problems at all. She is now in year 1 at our local primary school.

Piffle · 01/11/2006 13:54

Good luck for your friends CVS Mum2oliver
Hope it gives her the result she wants.

peacemakerukuk · 02/11/2006 09:31

Out of interest - what do people think of the portrayal of having a baby with downs syndrome on Eastenders at the moment? I don't think at present it is helping peoples assumptions but this may change.

Original poster

mum2oliver · 03/11/2006 15:44

Just to let you all know friend had cvs today and went ok.She feels positive and had someone very nice and experienced.She was told she didnt need to rest.The thickness of the neck had not changed since her scan a weekish ago and they could see the nasal bone.

OP posts:

eidsvold · 03/11/2006 20:58

fwiw - although not totally ruling out the possibility of the baby having down syndrome - it is somewhat important as something like 2/3rd of babies with down syndrome will show no nasal bone.

peacemakerukuk · 14/11/2006 09:58

I had my nuchal last friday and I was given a 1:21 chance of my baby being born with Downs Sydrome.

Lolabelle · 14/11/2006 10:26

I just wondered about that nasal bone bit, i was told he baby looked like he/she had a strong nasal bone and have been offered another scan at 18 weeks to look for soft markers like this as i don't want an invasive test. I guess i'm intrigued to know as much about my baby as possible as i'm having it regardless plus i may get a chance to see if that really was a willy i saw last time!

Is the nasal bone quite an important soft marker then?

peacemakerukuk · 14/11/2006 10:40

my sonographer didn't even look at the nasal bone and in retrospect I should have asked but I was so shocked at the result I couldn't think.

Lolabelle · 14/11/2006 10:41

You can try requesting another scan to look for soft markers - all they can say is no. She saw the nasal bone from the 12 week scan and it clearly shows in the scan pictures but what it means i'm unsure...

peacemakerukuk · 14/11/2006 12:04

It means the baby has a lower risk of having DS

charlyp · 18/11/2006 09:32

Feel the need to comment here, have just had my scan yesterday and my risk factor came back as low. I was very worried that this may not be the case as I am sure every prospective mother wants to know their baby is going to be 100% healthy and have an easy and normal life, there is no question that because of the cutural and social stigma that is still unfortunately attached to Downs Syndrome and other syndromes children effected by these syndromes will face some challenges in life.

I am not sure whether or not I would have proceeded with a prgnancy had the scan results and further tests indicated that my child might have Downs Syndrome or any other 'abnormalities' - medical term not my preferred, but if I had made a decision to terminate it would have been based on all the information I have researched over the last 8 weeks because aside from miscarriage this is about all I have thought about for the last 8 weeks waiting for the scan.

I somewhat affronted by the assumption from those who have children with Downs Syndrome that anyone choosing a termination on this basis couldn't possibly have looked into what this means and what the implications are, the fact is that should test results prove positive and the parents decide to terminate the pregnancy there is not long after the termination to have a D&C and the alternative is so much more emotionally fraught.

I certainly don't think any parent choosing a termination at this or a later stage would find it easy or a decision taken lightly and the inference that this is the case offends me greatly. I am staggered that someone requesting information gets such a harsh response and amazed that she got so little constructive advice. If I decided to terminate a pregnancy and was lanbasted by people who had not chosen a termination on the same basis that would be really upsetting, wouldn't it be more constuctive to help the OPs friend understand why thos who have children with Downs Syndrom made the decision not to terminate rather than just venting about how wrong it is ...

eidsvold · 18/11/2006 11:07

peacemaker - sometimes they are unable to see clearly the nasal bone - asked my sonographer doing the Nuchal translucency and she said unless the equipment is very high tech and sonographer very experienced it can be sometimes hard to see clearly. Perhaps why your sonographer did not look or did look and could not see clearly either way.

charlyp - if you see my information - I shared my story and my experiences of medical professionals who do not give women the whole story or even accurate information on which to base decisions. I also referred her to the DSA website for further information as well as trying to answer her questions. You would also be very surprised how many women accept testing without really taking into account the implications of those tests and what decisions they may be pressed to make upon receiving the information - I thought people were like you and me - researched everything as much as possible - but surprisingly I am learning that it is not the case.

As to the comments regarding the use of the phrase that we found offensive- surely it is worth pointing in out to people that it is a term that people and why - if we don't do it - who will.

Frenchsmallfry · 18/11/2006 11:34

This thread has made me cross. I wouldn't normally get involved in something like this but this thread has topped me. Grrrrrrrr!

I am not suprised mum2oliver has said she wouldn't ask advice on here again. She didn't get much advice she just got a battering from people.

I also understand that this may be a sensitive subject for some of you but there is really no excuse for just being rude.
Obviously everyone is entitled to their opinions but if you are not able to express your opinions sympathetically then I think you should refrain from posting.
This is supposed to be a support site.

Sorry to anyone who is offended by my post.

eidsvold · 19/11/2006 08:09

what I find offensive is that people cannot understand how offensive it is to refer to a child as a downs or even a cripple, or a palsy or a cystic ( as I have also heard) or a mute or the list goes on. I simply stated I found the use of the term 'a downs' upsetting - not just for me but for your friend for your friend - how could anyone refer to a child as a downs or heaven forbid - a mongol.....

Surely everyone is a person not defined entirely by a condition they may have.

I come back to - I posted a link for a website where she might find helpful information for her friend as well again at sharing my story - what is the issue with that.

Again we are constantly being told how helpful us mums of children with sn are by 'educating' others and here we are getting a slating for it.

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