high risk category but yet low risk?!?

(18 Posts)
mouseymummy Tue 09-Apr-13 19:47:46

Hi

I'm 12+3 and have just got my results for the nuchual (sp) back. I'm classed as being high risk for downs with a 1:124 ratio. This means I have a 0.8 chance of having a baby with downs....

I can honestly say I don't think I've ever been as scared as when the woman on the phone said the words high risk...

But in reality, my risks are pretty low?? I'm so confused!

Plus, I have a neatly 9yo dd and a 6mo dd to think about possible implications, as well. I will admit to being very naive about downs so possibilities are all over the.place!

If I have the amnio, there is as much chance of them saying the baby has downs syndrome than me having a miscarriage...

Sorry, I'm rambling, what I would like to know is, if you got these results would you have the further testing??

I have no one in rl that I could turn to, my family would just tell me to abort at even that low odds, just because it could happen, dh is just saying he'll follow me, whatever choice.I have no friends I can really turn to about this.

So, wwyd? I apologize if my ramblings make no sense but I'm a little agitated about it. Even though I'm probably panicky about nothing!!

Tia

lozster Tue 09-Apr-13 22:34:17

I got a 1:4 so I know how awful that phone call is. However the one thing I was grateful for was that the decision on diagnostic testing was easy for me at those odds. I do sympathise with your position where the odds are good but your categorisation is not.

I can suggest one thing - do a bit of research on amnio. Don't take my word for it but my obsessive googling research seemed to suggest that the process is perhaps safer than the data given out suggests as that data us very old. Certainly, the amnio is less risky than the cvs. I had a choice so waited for amnio.

In terms of process, I was emotionally all over the place but physically I was ok. It sounds a lot worse than it is. In terms of decision making, there are some people who don't do diagnostics as they are sure they won't take further action, there are done who know exactly what they will do and there are people like me for whom it's part of the decision making process. I wanted all the information possible to be available to me.

Finally, there was a lady on here very recently facing the same conundrum. Not sure what she decided to go in the end but have a search for her thread. Sorry you are faced with this.

mouseymummy Tue 09-Apr-13 22:42:33

Thank you so much for the reply and I'm sorry you've had to go through this too.

Ive so far stayed away from google as I didn't want to freak myself out even more but I'll have a look tomorrow...

It's a minefield though, with odds that low I'm worried that I'm putting a "healthy" pg at risk for such small odds iyswim... I dunno.

I'll have a search for that thread now

Thanks again

nellyjelly Thu 11-Apr-13 06:35:59

Phone www.arc-uk.org

Great advice and info from them. I used them to help me decide whether to have an amnio or not once.

Good luck.

narmada Thu 11-Apr-13 13:03:53

There is a new blood test called harmony which, while a screening test and not diagnostic, is as close to diagnostic as you can get without amnio or CVS. It costs £££ but might be worth it if you are not willing to risk amnio.

snapple21 Fri 12-Apr-13 16:37:39

It's all about what you class as a 'high risk'

I got 1-330 and at 22 that didn't feel low risk. I had an amnio and it
turned out baby did have downs. I was the one, and was blown away as I only had a 0.3 percent chance if u work it out. Which seems tiny.

You need to think about what you'd do if tests showed baby did have downs. The arc website as mentioned is fantastic. Pm me if you want any more info.

mouseymummy Tue 16-Apr-13 07:35:54

Thank you all for the much appreciated replies. I've had no tinterweb since Friday and have only just seen them.

Ive seen the prices of the harmony testing and it's just far too much. If I could I would etc etc.

Snapple, wow, very very low odds! me and dh wouldn't Abort if the baby had downs, it was more to know so we can put plans for extra time in hospital or whatever we need to sort out.

After speaking to dh and finally getting his honest opinion, which took some doing! We've chosen to wait til the twenty week scan and see if we can see the soft markers of downs and then go from there. The midwife I spoke with did say that quite a few people choose to do this.

It's been a hell of a week but thank you again, it's been a massive help. X

frogchops Tue 16-Apr-13 08:09:06

Hi mousey, this was me just three weeks ago. I had a score if 1:140 so not too far from your result. It really did knock me about mentally tbh. I called the arc people too who were helpful. When someone mentioned the harmony test I was the same as you in that it was just too much money. However, I called the clinic where they do it in bham for advice. They were brilliant at talking through the options. I would say if you know you wouldn't terminate, stick with your score (odds are still very low in the grand scheme of things). But if you feel that 20 weeks is a long time away think about a marker scan at a private clinic (much cheaper than harmony although not conclusive) to put your mind at rest a little earlier. I remember my midwife saying she wouldn't have even called me if it was 1:150 so the difference from my score (and yours really) to the 'safe' one was tiny.
In the end we were blessed by a family member who offered the money to be able to have the harmony (I was making myself Ill with worry!) and our results came back just fine last week. Good luck with whatever you decide x

Smitten1981 Tue 16-Apr-13 12:09:12

I was told yesterday that I have 1:15 chance of Down's. we looked at the Harmony test but I think from what I can gather talking to ARC that they give you more percentages and ratios and the only way to get a definitive answer is by CVS or Amnio. Also, there is a 14 day wait for the Harmony results.

We're booked in for a CVS on Thursday as I can't wait two weeks for an Amnio. The risks are slightly higher (I think they're marginal at 1-2% anyway) but that's a risk we will have to take.

I want to know ASAP so we can get on with things one way or another.

frogchops Tue 16-Apr-13 17:50:51

Smitten, the results that harmony will give are either 99.9% positive for downs or 99.9% negative. They will never give you a percentage in between. My results show low risk now (after being 1:140 high) at <1:10,000. That's the lowest score they can give. They also show the same for Edwards an patau syndrome. Hope this helps, just because they aren't allowed to call it a diagnostic test, its pretty dam close with no risk involved.

Smitten1981 Tue 16-Apr-13 18:00:10

Thanks for the info, I wish I'd known that yesterday. No one could really tell me how the results were reported.

I guess I'll stick with the CVS as I think the two week wait for results would be agonising.

frogchops Tue 16-Apr-13 18:19:57

You'll be suprised how much better you'll feel just for having the test (sorry if I seem like I'm getting commission for promoting harmony here!) it made the two week (which was only 9 days for me) bearable. Speak to the clinic ( I don't know where you are but bham MUMS clinic are excellent) they talked it all through with me every day for almost a week before I went!! How far gone are you?

Smitten1981 Tue 16-Apr-13 18:26:58

13 weeks tomorrow. I called the clinic in London as I'm near there, but I couldn't get hold of anyone so I left a message and they haven't called back yet. Annoying.

I'm fine having the CVS though. The risk of miscarriage is so tiny. I surely can't be so unlucky and end up at the bottom end of the statistics twice in a week. Hopefully I should have the results early next week.

frogchops Tue 16-Apr-13 18:33:26

That's good, hope it goes well! And your results lean heavily towards cvs being a good option riskwise as mine were 1:140 so the 1:100ish amnio risk was very much the same in my mind. Good luck!

mouseymummy Wed 17-Apr-13 19:27:16

Hope the CVS went well today and you get the results you are hoping for, smitten.

I completely get where you are coming from, I think if my results were as high as that I'd probably go for the further testing,jjust to be clear.

Ive been looking up what they look for on the scan etc today (I was bored and had dd2 asleep on me so couldn't move) and one thing they look at is the presence of the nasal bone. 3 in 4 downs baby's don't have a nasal bone, according to the information I've seen and I know baby has the nasal bone as the sonographer wanted a pic of the 2.5 nuchal measurement and the nasal bone.

Apparently, according to the antenatal testing team I spoke to, the nuchal test only tests for downs... Which has me worried that there might be something else wrong, the nuchal measurement wasin "normal" range... Argh!!!!

Thank you for the idea about the private scan... Off to find out how much they are and where I can get one done :-)

Again, smitten I have my fingers crossed for you!!

Smitten1981 Sun 21-Apr-13 22:28:29

Hello! The CVS was fine and no problems after either. I just have the tiniest bruise, but it isn't sore and no pain.

I'll let you know the result when I hear from the midwife on Weds.

Smitten1981 Tue 23-Apr-13 17:01:20

Just to let you know that we had the all clear today from the CVS. So relieved.

narmada Tue 23-Apr-13 20:47:00

Congrats, that is GREAT news. Hope you can relax a bit now.

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