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Original poster

high risk downs result

53 replies

SanAndreas · 06/07/2009 12:56

hello there

Just recieved the news that my bloods have shown that im high risk for Down's. 1 in 180.

Wasnt expecting it even though i am 39. Its my third baby.

Im 19 wks now and couldnt face a termination and always said id never terminate but what the hell do i do. They offered me an amnio but is there any point? On the other hand how the hell can i wait until the baby is born to find out. Im having my anomoly scan on Wed which might show something, but what if it doesnt?

Im really worried now, ive got work this aafternoon but cant face it, but i suppose i wwill hav to just go.

Any advice please?

OP posts:
muddle78 · 07/07/2009 19:02

right. amnio for genetics scan 4 heart ect. if amnio shows downs they know what to look for specific to downs on scan. midwife told me this info :-)

brettgirl2 · 07/07/2009 19:10

I don't agree with the view 'if you wouldn't terminate there is no point in having an amnio'.

I think it depends on your personality. I haven't been in this situation but I am certain that I would need to know one way or the other as I am a worrier.

sarah293 · 07/07/2009 19:27

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wrinklytum · 07/07/2009 19:30

Hello Andrea sorry you are going through this

Has anyone mentioned ARC (antenatal results and choices) who are a charity that offer advice.

I know it feels like the end of the world at the moment,all this stuff,but as you say you would not terminate there is also a lot of advice and support on the SN part of the board with regard to Downs Syndrome and there are several mn who have children with Downs Syndrome who often write about the happy and fulfilled lives their children lead,even though they have a learning disability.I have a sn child (condition untestable for) and through her have met several delightful children with DS.

Hoping that whatever the outcome of your tests you do what you feel is right for you.Sending a big unmumsnettly hugxxGo easy on yourself.

Original poster
SanAndreas · 08/07/2009 10:38

Thank you. My scan has now been rescheduled for Fri, so more waiting.

I am just praying scan shows all ok. I would definitely keep a baby with Down's as it is no way the worst disabilty that you could face. Although, it would ruin everything as it is at the moment. i know that sounds awful, but depending how badly a baby were to be affected could have amassive impact. fOR INSTANCE, no way could i finish work or even reduce hrs and close family work too so we would have minimal help.

DH would be supportive but i know he wouldnt want a Downs baby and would prefer me to terminate but he knows i wouldnt.

Anyway, having said this, im trying to be optomistic and that all will be well.

OP posts:
lljkk · 08/07/2009 12:59

There are people on MN who have managed to have a career and a child with DS; look up Thomcat for instance. DS varies a lot in severity.

Good luck with the scan.

sarah293 · 08/07/2009 13:25

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Original poster
SanAndreas · 08/07/2009 13:34

Men definitely dont bond in the same way. I understand where my dh is coming from. Like i said, it would be devastating for our family. Its maybe not so bad if its your only child, but we have other two to think of.

I am very pro life, and im not having a dig at anyone when saying that. However, my dh is very different. I would also suspect that his mother would try and interfere(not that it would make a jot of difference) and try and tell us us how it would be hard to cope

He would never bully me though. And anyway why am i saying all of this? I ahvent even had anything confirmed, just a risk!

OP posts:
sarah293 · 08/07/2009 13:37

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Original poster
SanAndreas · 08/07/2009 13:44

Oh my God MIL shocking!!! Dont think even mine would be that bad.

Mine did comment after my 2nd dc though that i shouldnt have any more at my age. Wouldnt mind i was 37, not 57! And anyway she had her first at 17. Hardly ideal either! Anyway, look at me ive lost the plot.

I think if a problem is found i would feel very alone as i can imagine family's attitude(would be kinder to not continue with pregnancy, think of other two etc) and although dh wouldnt say anything i would feel i was maybe burdening him.

OP posts:
Original poster
SanAndreas · 08/07/2009 13:46

And Riven i also pointed out to dh what if there was hypoxia at birth(like you), we would have to manage then. And there is no test for that, or many other things rthat could go wrong

OP posts:
sarah293 · 08/07/2009 13:52

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fizzyanddizzy · 08/07/2009 14:01

Hello
I have a baby with Down's syndrome(after being given odds of over 1/1000). I didn't give it a thought whilst pregnant - was more worried about something going wrong in labour.

He is also our 3rd child - funnily enough with our first we were given odds of 1/14 so I had a CVS as I knew I would fret otherwise.

When he was born I panicked at what we would ddo - but I have gone back to work, he is thriving at the childminder. There are a lot of appointments but other than that the nightmare is in having three of them

As for MIL's - don't even get me started!!!!!

Am really sorry you are going through this - it is horrible and agree with both you and Riven about how the other half feels. Luckily mine on the surface is coping well. I know he would rather we had stopped at 2. II just try and not think about it!

Sayyesmummy · 08/07/2009 14:07

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Original poster
SanAndreas · 08/07/2009 14:39

thanks fizzy thats a very positive story. And yesmummy, i know you are right. My dh says the same. I know it makes sense!

OP posts:
handbagqueen · 08/07/2009 14:49

Hi SanAndreas, I has an Amnio with both my DD's as they were both high risk 1:80 and 1:50, both were fine. Ask for a consultant who has performed the procedure lots (100's or 1000's) of times before as the more experienced they are the less the risk of miscarriage. Try to rest before and after the Amnio is the only advice I can give. It is really worrying and a horrible thing to go through.

There are other measurements that can give an indication of downs (not 100% as the amnio, from memory there is a detailed blood test and a measurement of the nasal bone, I'm not sure if they are available everywhere or on the NHS, but it is another option.

juicylucytoo · 08/07/2009 21:08

I went through this at 12wks. Got back scan result of 1 in 190. This is my 2nd pg and I'll be 42 at term.

I made the decision to have a second scan at the Fetal Medical Centre. This showed a heart murmur which is a marker for Downs, so giving me a higher risk than the NHS.

On the basis of this I decided to have the CVS there. Prof Nicolaides performed the test and his miscarriage risk is allegedly the lowest around (as he created the test), so I felt I was taking the least risk I could. The scan was £150 and the test a further £350.

This was what was right for me. You have to know what you'd do with the result. Can you continue your pg without knowing. If you'd carry on anyway, then don't do a test. I needed to know.

It's a very difficult, but very personal choice. If you want CVS / Amnio I'd seriously consider the Fetal Medical Centre. They were great.

Good luck xx

mosschops30 · 08/07/2009 21:11

can I recommend these people

when I was having a nightmare over testing someone on here recommended them to me and they were wonderful, they will let you talk for hours, make helpful suggestions, discuss all your options over and over again.

alison56 · 08/07/2009 22:06

I had a risk of 1/168.

I had the amnio.

It was painless and I had no complications.

Baby was fine. I was glad I'd had the amnio.

Cadelaide · 08/07/2009 22:12

My risk was 1 in 60. When I first found out I was....not distraught, I'd say very sad (after 2 mcs).

I decided not to go for amnio and as the pregnancy progressed I became more confident about our ability to cope, whatever the outcome. I spose what I'm saying is the level of panic and worry you feel now won't necessarily continue throughout the pregnancy.

kd73 · 08/07/2009 22:26

My risk was 1 in 120. I was distraught not just sad (after 2 mcs)

Decided against amnio as pregnancy at greater risk and agree as pregnancy went along, it became less of an issue and the panic and worry subsided.

Good luck with whatever you decide.

PS beautiful boy born 6 months ago, he doesn't have down syndrome

meljj74 · 09/07/2009 11:37

I had my nuchal scan on Tuesday and all was fine, 1: 5862 - but then bloods increased my risk to 1:35! Apparently my free beta HCG levels are very high.
I am 34 years old and am now waiting for the phone call with results of CVS.....
I am going mad waiting.
Mel x

alittleteapot · 09/07/2009 14:57

Mel what a massive drop! Let us know how you get on. It's bizarre how much the stats can change. Good luck.

fizzyanddizzy · 09/07/2009 20:38

Goodness - Good luck Mel, I remember the waiting for that phone call - was a horrible time. Remember thats still 34 out of 35 chances that all is fine! x

kelly01270 · 14/07/2009 21:21

hiya my name is kelly,i had a call from the midwife this mornin tellin me my blood tests results had come bk at high risk.i was so shocked n absolutly gutted!!im 17wks with my 2nd child and in 22yrs old.ive got 2 go in hosp 2mo.the docter is goin 2 explain everythin in detail 2me.den i will get scaned n offerd the amnio.i think i will have it done tho!im so so scared!fingers crossed!!!