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1 in 190 chance of Down's - low risk?

(17 Posts)
Cariad007 Mon 09-Sep-13 18:00:01

Hi, this is my first post on Mumsnet so please be gentle with me!

I had the combined screening at 13 weeks + 6 (I couldn't remember the date of my last period so thought I was 12 weeks when I was nearly 14). The NT measurement was 1.5mm and the nasal bone clearly visible but I had to wait 2 weeks for the bloods. The result didn't arrive before I went away on holiday for a week so I only saw it when I came back yesterday.

Anyway, the letter said I'm low risk as my chance is 1 in 190 and they wouldn't be offering me any further tests. BUT I am still quite worried as a) the cut off point for high risk used to be 1 in 250 until it was changed a few years ago to 1 in 150, and b) at my age (I'm 36 now, will be 37 when the baby is born) the average risk is more like 1 in 220, so 1 in 190 places me at a higher than average risk. I'm not overweight and I'm not a smoker so I assume it was my blood tests that might contribute to this.

So I am now sitting here really quite worried as I'm not sure what to do. I've rung the hospital but the person I need to speak to is on leave today. A cousin of mine had a Down's baby at 19 and a friend has just gone through a traumatic time where her baby was diagnosed with Edwards Syndrome and she had to have a termination. So I'm not sure if all that is playing on my mind too.

Has anyone else been in a similar situation?

curlywurlyllass Mon 09-Sep-13 19:11:57

I missed the earlier combined testing of nuchal measurements and bloods due to muck ups, thanks care team!
so my knowledge is from the later AFP bloods from 15w+
I was told normal risk for someone around 35yrs was 1 in 350
my clinic's cut off for high risk is 250 and they wont investigate if u are above 150.

I was 1 in 55 and sent for an amnio. Thankfully results came back ok

I read googled loads of ladies experiences with their risk indicators and end results and although i was still petrified i felt humbled at their strength and resilliance with worse odds than mine

I dont have any advice for you but do speak to your midwife/consultant team about your worries, they should be able to answer any questions u may have.
its a lot to be worrying over, you read of ladies getting really low risk numbers that make you think 'why me'
Im keeping it low key and cant really enjoy my pregnancy partly due to useless care but thats a rant for another day
There is so much to stress over in the 9monthe isnt there!!!!

Thinking of u

snapple21 Mon 09-Sep-13 22:35:43

You need to speak to the screening co ordinator at your hospital and discuss your options, if you are worried they will more than likely offer further testing - see my post on another thread in this section - think its called can you have testing whatever your odds. Hope this helps.

Cariad007 Tue 10-Sep-13 11:41:43

Thanks very much for the replies. I spoke to the screening coordinator at the hospital today and she said that my freeHCG level was 3.2 (normal is around 1) and that’s what brought up risk up higher than average for my age. Everything else was well within the norm. She explained that there are other tests available and made an appointment for me with a consultant on Thursday. So I will go along then and see what they say.

snapple21 Tue 10-Sep-13 16:17:57

Good luck! Let us know how you get on. I am sure all will be well but it's a good idea to discuss all your options.

MrsDibble Tue 10-Sep-13 16:45:54

Sounds good that you are getting to see the consultant. 1 in 190 is probably still quite low as you have 189 chances of everything being fine.

I think some hospitals have a higher cut off point than others for offering additional tests - the hospital I was at only offered them if you were 1 in 150 or worse.

If they won't offer you more tests then you could always choose to go private just for more tests- the fetal medicine centre/foundation in London is very good, but I'm sure there are lots of other good places.

TarkaTheOtter Tue 10-Sep-13 16:53:15

I had a risk of 1/160 at 29 with dd and she had no chromosomal abnormalities when she was born. 1/190 is a low risk. Given that your risk is only very slightly higher than average for your age AND only because of one of the markers (your nt measurement is quite small and I'm sure I was told that is the "best" indicator), I wouldn't take the risk of diagnostic testing or spend money on the harmony test.

SaggyOldClothCatPuss Wed 11-Sep-13 11:09:27

I in 190 is around a 0.5% chance of a problem. That's 99.5% chance of a normal PG. Ill take those odds!
Im still waiting for the results as babies NF was borderline. Anything lower than the risk of MC through amnio or CVS is good enough for me.
My bf's DD came up as 1 in 13, bf was mid 20s. Her DD is fine. Just heading off to college with a pocket full of A*s.

Michellephant Fri 13-Sep-13 18:54:45

My friend, aged 22 at the time, had odds of 1 in 330 and was the unlucky one. Whilst the odds when turned into a % sound good, it means nothing if you are the 1 person. Sorry to be hard about it but if you want a definite answer then I recommend having diagnostic testing. Even if you didn't think you would end the pregnancy, being equipped with a diagnosis well in advance will make all the difference when that baby comes if it needs any extra help.

I had a TFMR for down's syndrome and a heart defect called AVSD which is linked with DS. I was 23. I didn't have the screening though so I didn't know my odds. I only found out because the heart defect was flagged up at the 20 week anomaly scan and then I went ahead with amnio.

NT measurement and nasal bone being present are good signs but your baby might have a different health problem which is causing the tests to be abnormal, and CVS and amnio won't necessarily bring up every possible problem either.

Cluesue Fri 13-Sep-13 18:58:29

Hi I had a 1 in 82 chance at age 36,my daughter is fine xxx

wimblehorse Fri 13-Sep-13 19:08:44

You are below threshold for routine further tests because the odds of baby having ds given your results are about the same as odds that an amino would cause miscarriage.
0.05% chance is low risk (ds1 was 2%, we chose not to have further tests, he is nt). But as a pp said, odds mean nothing if you are the '1'.
Good luck for your further tests, how far to take them depends on what you would choose to do, how prepared you would be to have a child with ds. All the best xx

samsmother Wed 02-Oct-13 15:20:03

I had a 1:224 risk at my 12 week scan. I still can't get over it as it still feels so high for me and have struggled to get my head around it. I'm now 19 weeks and currently sitting in the FMC waiting to have the Harmony test. It's such a lot of money and its money I dont particularly have BUT I've been an absolute mess and am so disconnected from this pregnancy that I've had to somehow justify the spend as a neccessessity because I couldn't continue feeling the way I have done. You'll do what's right for you OP and I wish you well with whatever you do

devientenigma Sun 06-Oct-13 11:05:08

I was a 1:276 risk at 29 so low risk, so no further testing needed. Baby was born with a serious heart condition and Down syndrome. Apparently his heart condition should of showed on scans but didn't. It is also irreparable. At the end of the day it's your choice, go with your gut feelings to test further etc. it's what you want to know and need to do, no one else.

TondelayoSchwarzkopf Mon 21-Oct-13 21:34:25

I just got my results - also 'low risk' but at 1/220 feels high for me. DS was 1/8000 but that was 5 years ago and I am an oldie now - 39, will be 40 on the due date.

I have decided to try and get the Harmony test. I wish I could be someone who said they didn't mind and it didn't matter but I'm not. Hopefully I will get it on my company bupa scheme.

Cariad007 Thu 20-Feb-14 14:52:43

Just wanted to say I has my son yesterday and he is perfect! We didn't go the amnio route but we had a detailed anomaly scan where we were told all indicators were that he was fine, but seeing the proof when he was born was wonderful. He's beautiful and we love him to bits.

chezchaos Thu 20-Feb-14 16:32:43

Congratulations, that's wonderful news!

ThePieSmuggler Fri 21-Feb-14 13:08:23

Congratulations grin

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