DS Test

[rainbow.nicola]

I know this might be a personal thing but I was just wondering if anyone wanted to share their views on the Down's Syndrome screening and diagnostic tests?

 

[Cantwait2011]

Hi, I've just had the first part of the Harmony test done, back next week for the blood results and detail scan - I will have the NHS test too but know due to my age that I'll be a high risk so this gives my a proper result and 99% effective is better than the NHS result.

 

[CARNAT22]

I had the screening and will again if we have another.

The diagnostic tests (IMO) are not relevant unless the screening comes back as high risk. I would have made a decision about diagnostic testing if I had been in that position but probably would have had either the amnio or CVS if need be.

Information is power and for me I'd need to know all the facts.

xxxxxxx

 

[rainbow.nicola]

The midwife just said to me something like, It's your choice, If it's high risk it's not definite obviously but then you might worry for X months for nothing. She put me off it a bit but my OH wants me to have it done.

 

[Jen1232]

The way we thought about it is that it is better to have all the information.

I have my test on Monday and have to admit I am really scared.

 

[MrsMeaney]

I've decided not to have it. Purely because it wouldn't make a difference to me with regards to keeping it. If I had the first test, and it showed an increased risk, I'd still refuse the second so I'd have all this worry with no definitive answer. We'll just cross that bridge when we come to it, really.

 

[Lilmisshopeful]

I'm having the screening test and I know it will come back high risk cos my age but I will look at the blood results and scan results and make my own mind up how at risk I am. I won't have the following test as carries a small miscarriage risk and I'm already high risk anyway. The results would be irrelevant to me as I would have the baby so why risk it. It's a personal choice like you say. No harm done from screening tho for an idea x

 

[holly1]

I think its a very personal choice but i thought that if if i came back high risk would i have the further tests done? If i didnt then i probably wouldnt have the original tests done as i think i would worry more. For me like carnatt22 Information to me is everything, i like to be prepared otherwise i stress to much so for me if it came back high risk i would go for further tests just so i can prepare myself. Mine came back the other day and i was low risk.

But i personally think there is no right or wrong answer its just how both you and your OH feel about it. Im sure you will make the right decision either way. x

 

[Beauandhamish]

We have chosen not to have it. If it did come back high risk I wouldn't have the other tests so it wouldn't make a difference to me. X

 

[SaraLouise]

I chose not to have any of the tests.

I would have never have agreed to the 2nd part, so didn't want to have the 1st and then be worrying for the rest of the pregnancy x

 

[Dotty_woman]

Hi, I've just had the first part of the Harmony test done, back next week for the blood results and detail scan - I will have the NHS test too but know due to my age that I'll be a high risk so this gives my a proper result and 99% effective is better than the NHS result.

I had the Harmony test too and for me it was a good option. I have been a lot more relaxed since without the worry of an amnio. I had the bloods at 10 weeks and the nuclear scan at 12 weeks via the same place that did the Harmony test. They advised me not to have the NHS test as it could come back high risk even though Harmony test is coming back low risk. I rang the NHS to say I no longer required the nuchal screening at the 12 week scan and because I had been private, they then refused to let me have the 12 week scan so be aware of this. xxx

 

[rainbow.nicola]

Hi, I've just had the first part of the Harmony test done, back next week for the blood results and detail scan - I will have the NHS test too but know due to my age that I'll be a high risk so this gives my a proper result and 99% effective is better than the NHS result.

I had the Harmony test too and for me it was a good option. I have been a lot more relaxed since without the worry of an amnio. I had the bloods at 10 weeks and the nuclear scan at 12 weeks via the same place that did the Harmony test. They advised me not to have the NHS test as it could come back high risk even though Harmony test is coming back low risk. I rang the NHS to say I no longer required the nuchal screening at the 12 week scan and because I had been private, they then refused to let me have the 12 week scan so be aware of this. xxx

That seems a bit ridiculous, are they not suppose to give you the scan for dating and to check everything is okay regardless of any tests which are not mandatory anyway?

 

[Cantwait2011]

Really ?! That's ridiculous ! I'm not telling them I've had the test, I told my MW who was fine about it and said it would be interesting to compare the results ! I've got my 12 weeks on Tues then private scan on Thursday.

For me I wanted to know, as Carnat said, it's all about informed choices and like DW I don't want to worry about this for the rest of my pregnancy - I think only you can know really x

 

[Sparklisam]

Very personal choice but my midwife advised me only have it if you are prepared to have the next stage of testing if you were high risk.

I'm a learning disability nurse and know tooooooooo much about the system!! Also the varying levels of disability. Behaviours, services, how it affects family life (positive and negative) my personal choice is that I wanted the tests as I wouldn't want to spend my life with these battles !! Seeing family's go through this day in day out. But then it's also one of those things that I don't think anybody can face until they are hit with the reality of the situation !!

However for others a baby is a baby and a disability is what makes them who they are and I would be out of a job if they didn't believe this. I love my job and the differences I make to some amazing children with Down Syndrome ... But I can go home at the end of my 25 hour shifts !!! (Yes 25 hours !!) lol. My brother is also autistic and I wouldn't change him for the world.

Sam x

 

[tweetyfoo]

My opinion on diagnostic tests has changed very recently.

Having a baby with DS I initially thought there's no poor in the tests as I certainly wouldn't abort a baby due to DS.

There are a couple of things to point out though.

The test is not a DS test. It is a risk test - it will not tell you if your baby has DS or any other syndrome, it will simply tell you your risk - I was low risk btw.

If you have a CVS or amino (or harmony) it's not just checking for DS but other syndromes which are not compatible with life such as Edwards or pateau.

People don't have an amino or a cvs jst to decide whether to abort a baby - it's to have information. (Although 90% of babies diagnosed with DS antenatally are aborted)

I found out Aaron had DS at birth and it came as a complete shock and ruined what should have been a celebratory time. I have a lot of regrets about those first few days and it can't be changed.

Knowledge is power IMO.


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[cosmicgirl]

Good post tweety.
I agree with the sentiment that if you are not willing to have further testing there is no point having the initial test. Those numbers are purely to help health professionals pick out ladies to put forward for further testing x

 

[Frankie_Lou]

Shit 90% of babies with ds aborted! I never realised it was that much!

Personally I declined screening for this pregnancy and the last as I know I wouldn't want to have the next stage regardless of the results. The thing that put me off was the risk of miscarriage with the later screening. For me its not a risk worth taking though I can see why others do.
I've just been watching the news with OH about the new less invasive testing being developed and I had to explain to him what ds is and some of its effects. I asked if he'd mind a baby like the little girl it was showing and he just said she's gorgeous why wouldn't I want to be her daddy. Lol bless him.

So basically to summarise no I personally won't ever be having any screening x

Sent from my BlackBerry 9380 using Tapatalk

 

[cosmicgirl]

I really had no idea it was such a high percentage either. Is that purely downs or does that figure include the other syndromes?? xx

 

[Chelleyd]

I personally had the CVS done last week by choice when I came back as high risk because I needed to know all information x

 

[tweetyfoo]

I really had no idea it was such a high percentage either. Is that purely downs or does that figure include the other syndromes?? xx

I believe it's just downs


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