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I had a nucal/intergrated test today

232 replies

Thomcat · 14/06/2005 23:33

Can't **ing believe it.

Did it for DP, he needs to be sure, or more sure of what was happening, so as it's his baby too I thought, okay fine, i'll do the intergrated test for you, then at least you'll relax and we can crack on and enjoy this.

Hmmm, not so **in' fast aye.

Oh, why, why, why.

So pissed off.

Had the 1st of the bloods taken and week of 1st July will have the 2nd lot taken and then 10 days later get full results.

Today they did the scan part too.

It measured 2.4. Was 3 at one point but baby was in a bad position so 2.4 was the measurement she took.
That on it's own, with past history, gives me a 1 in 89 chance.

Why oh why couldn't it just have been a 1.whatever measurement and shut everyone up.

ughhhhhhhhhhhhhhhhh.

Someone pass me the remote so I can hit fast forward, to December.

Maybe I should run away and when i come back it'll be too late for anyone to give me any tests and they'll all just have to leave me alone.

Wish D was cooler about it all, I do understand but..... wish I didn't have to be understanding.

It's all bollocks.

Stupid bloody testing.

What have I always said about this, and now look

OP posts:
MandM · 15/06/2005 09:16

Sorry TC, crossed posts.

tiredemma · 15/06/2005 09:23

thinking of you TC.x

Jimjams · 15/06/2005 09:24

TC - so sorry to hear this. You don't know how pleased I am that there are no tests for autism.

Can you do some mental gymnastics with yourself. You know Lottie was low risk, this is high, Lottie had ds, so this baby won't. Daft I know but it sometimes helps me.

One thing I don't understand is that they're taking into account past history. Does that mean they're treating Lottie as a "normal" translocation ie where either you or D would be carriers? If they are then that will make a HUGE difference to the Stats.

Whilst D's feeling should be taken into consideration- I do think the final decision for an amnio/cvs/nothing should rest with you.

Saker · 15/06/2005 09:30

Thomcat, really sorry that you are having so much trauma. It really isn't fair.

onlyjoking9329 · 15/06/2005 09:30

i am sorry you are going through this TC and yes it is a black could BUT there will be a rainbow and you will notice it so much more after the black cloud, you love this baby and no matter what your hubby will love this baby too, i do think it takes hubbys a bit longer to catch up on this roller coaster ride, he won't be getting off the ride thou, take care.

elliott · 15/06/2005 09:43

TC, I'm so sorry. I do know a bit (professionally) about the screening tests and I really think this integrated test thing is so hard to get your head around. The only result that matters is the final one based on all the results, so try try try (completely impossible I know) to just forget that you know the nuchal result (nuchal isn't a very good test on its own at all, you know) - I have to say I don't know why they told you the probability because the whole point of the integrated test is to get one probability based on all the information.
But I know that's not really the point - I can really see how scared you are that you may have started something you can't control. Have you had a really good chat with D about what you are really doing this for? Have you discussed what you are going to do if the results come back with a high probability? Better to talk now and try and decide than get bounced again onto the conveyor belt....
Bloody tests. You're right they're a huge Pandora's box.

elliott · 15/06/2005 09:50

btw they may be non-invasive but there's sure as hell nothing 'simple' about these tests.
I'm so sorry you're havign to go through this.

hub2dee · 15/06/2005 09:55

Hi TC, as someone else mentioned, this was a no win situation, wasn't it. I hope bloods swing things firmly in your favour and you both can feel more reassured. Hasn't been an easy start to your pg, hun eh ?

I have a link to the 12 week sonographer's training manual authored by the leaders in this area. It is clear and well written with very detailed info about all this if that might help you / dp (what they look for, graphs of risk, how they correlate blood results back etc. etc.), if you want the link / doc, just post or CAT. (I presume this testing was carried out by someone very experienced, right ? There are VERY specific guidelines about taking all these measurements), and I believe different risk calculation software (or even different versions of the same package) will throw out different results as they number crunch different variables etc.

moondog · 15/06/2005 09:56

TC,from what I remember,when I had the OSCAR about 15 month ago,the combined blood,nuchal fold thing was 95% accurate.
Doesn't really help though I know.
I was another one of those who,in retrospect got involved in a horrendous house of cards test scenario. Dreadful experience,very frightening and isolating as a lot of us know.

soapbox · 15/06/2005 10:01

TC - I hadn't realised that your DP felt so strongly about this. That certainly changes things and makes it very much harder for you both.

I hope the bloods give you the answers you want and that you can settle down and enjoy the remainder of your pregnancy.

If not then it is going to be hard going, but we will all be here to support you whatever the outcome

beachyhead · 15/06/2005 10:03

TC - I know you are in the middle of the integrated tests at your hospital, but is there any chance you would want to go for the combined test all at one time at somewhere like the Fetal Research Centre in Harley Street. I had a 1 in 86 chance on my age and with the basic scan got to 1 in 126. So I went to the FRC and paid £130 and within one hour had a full monty scan, saw the bridge of the nose of the baby, had bloods taken and they were tested and got a result of 1 in 1395. It was all in all a very pleasant enviroment and for the money, I actually thought it was very worth it. It might save you a lot of angst over the next couple of weeks.

I got the number off another thread here, but it is run by Mr Nikolades who has an excellent reputation (he was the Mandy Allwood 8 baby doctor).

Good Luck in whatever you choose to do.....

maddiemo · 15/06/2005 10:14

I am so sorry about the way the chain of events is going. Maybe, try to be seen more qucikly as people have suggested as I imagine the need to know now is overwhelmimg.

Perhaps write a note for DH to let him know you feelings.

Finally, you have not been disloyal to Lottie.

elliott · 15/06/2005 10:21

I have to say I do NOT think that more, quicker tests is going to solve the problem - they will just give more info to process, more probabilities, maybe higher, maybe lower. As TC knows, the only way to get a 100% answer is the amnio or CVS.
Remember the integrated test is the best in terms of how many cases it will pick up, but more importantly it has the lowest rate of unnecessary referral for amnio.
I really don't think you need more uncertainties in the mix right now.

Marina · 15/06/2005 10:27

Oh TC, I am so very sorry this is you of all people on this thread. I really hope those flaming tests do their stuff for you both.

coppertop · 15/06/2005 10:30

Oh TC. My head is spinning just reading about all these test results and odds and what they mean so I can't even begin to imagine what you must be going through. xxx

Ellbell · 15/06/2005 10:42

ThomCat
I posted a stupid 'how's it going?' on the other thread that I started about going away... and then I saw this.
I'm so sorry. Wish I could fast-forward time to December for you. I can only reiterate what someone else said. This is still your baby, still the baby that you wanted so much and already love... nothing will change that. And I'm sure your dh knows that too.
Sending my very very best wishes

Hausfrau · 15/06/2005 10:48

This reply has been deleted

Message withdrawn at poster's request.

hunkermunker · 15/06/2005 10:53

Haven't got long as have to go out, but just wanted to check in on you this morning, TC and give you more hugs. Haven't even got time to write another convoluted hoping to be supportive but not really making any sense gremlin-aided post, so please breathe a huge sigh of relief about that

Many huge hugs and if there's anything I can do, holler. CAT me if you need to. Love HM xxxxxxxxxxxxxxxxxxxx

SleepyJess · 15/06/2005 10:56

TC ((((hugs)))) STOOOOOPPID bollocky arsewipe tests and stupid bollocky arsewipe statistics!!

(SJ - in foul-mouth mode! How DARE this shit make TC feel bad!!)

Thomcat · 15/06/2005 10:56

Jesus, it's at times like these that Mumsnet massively comes into it's own aye.

JimJams - thanks for the post. They are taking Lottie into account so my risk is already increased because of that. Although she is translocation she is 'nonfamilial translocation', meaning a fluke as I'm sure you know, so they are treating her as a trisomy 21 for the sake of the risk factor.

elliot - they shouldn't have told us, and she said that at the time, but the doctor is pregant herself and she said 'if I see something I'm going to tell you ok, and if you want I'll calculate your risk at this stage, so you have some sort of idea in your heads right away', she was putting herself in our shoes. She spent ages and ages with us. Bubs was lying too close to the membrane to get a good reading for ages but she kept on and on and then she sent us off and put us in a little private lounge room and made us tea in the hope that baby would move to a better position, which it did. She made us very aware of exactly what was happening and what it meant etc. I was actually incredibly grateful to her for that.

Re talking to D - well he knows how I feel but he's so different to me in that way. He's really only just saying lets cross each bridge at a time and 'everything is going to be ok'. I can't really get past that and the genetic consellors advised that that is the best way to deal with things, althought she understood I needed to fast forward a bit.

Beachyhead - I'll do a search on internet and try and find out more, but elliot has a good point tbh. God knows what to do now tbh.

It's not that I feel disloyal to Lottie, nothing, nothing in this world changes how I feel about my baby girl. If anything I love her more and am even more grateful for her. But I feel like an idiot and a fraud and a fake. I've been doing interviews, speaking to people about how testing is awful and how I won't get tested. I didn't realsie D felt differently, I didn't stop to think for a second that he wouldn't feel the same way. So I did the test, I didn't want to but I did, and now look what's happened. It just proves my point, but a point now I wish I'd never made beacuse I've gone back onb what I said and I feel gutted.

What percantage will be be happy with and what if it's high? I can't get my head round what a high risk might mean, what if D wants me to go through with an amnio? And what if I do that and then we find out it will have DS? Dear God, what then? And if... if, ........ will all future pregancies go down the same route?
What was the point of me and D not being carriers of the extra chromosome if this is going to happen to us all the time anyway.
I remeber when the genetic consellor told us we were flukes and I was so happy, but life just isn't that simple is it.

And I'm spouting all this out at you and I could be sat here with a totallly NT child inside me.

FFS, why, why, why does this test exist. Why is it possible to detect DS? And if it has to exist why then is it even an option (unless in very special circumstances) that you can terminate? Go and find a cure for cancer and stop finding ways to worry pregant women and then offering them terminations.

Ohhhh a long rambled post and I',
m not going to preview it. you'll just have to take me as i am.

OP posts:
bundle · 15/06/2005 11:05

oh tc, i'm sorry you're so upset. could you just stop the whole thing now, and not even get the results? or would your dp definitely want the new odds too? would he (ever) want to terminate? (if no, then why does he want the bloods?)

As you know i'm not against testing, but I feel v strongly that people should have at least a plan a/plan b before they test, because once you're on that pathway it's an (even more) emotionally-loaded time. I think the whole nuchal/bloods route is offered as a reassurance (esp to older mums) and obviously this is only the case some of the time. (sorry if this all sounds a bit strong, but i'm just thinking out loud about some of the difficult issues you've raised. I do - of course - hope there is Good News for the Thomcats, xxxx).

elliott · 15/06/2005 11:06

Oh TC. I'm sure a hundred people are crossing posts with me but anyway...
Remember 1 in 89 means just that - you almost certainly (88 times out of 89) DO have a totally NT baby inside of you.
I'm sure your doc was very nice and all that, but personally I'm cross with her. Has this information helped you? No. Is it the best info on risk you can get? No. That will come when the final 'integrated' result comes back. In the meantime, what are you supposed to do with the information? Sit and worry. hmmm.
When did you discuss going for the test with D? How long did you have to decide? Have you talked about amnio with him - do you each know what you think- or is he not capable of taking it that far ahead? I just think, really its important not to be jumped into anything more. You feel bad enough already. But perhaps that's just me - I'm an endless 'talk through all the scenarios, face up to every worst case possible before it has happened' sort of person, and I know a lot of people aren't like that.

Dingle · 15/06/2005 11:12

TC{{{{{{{{{{{hugs}}}}}}}}}}}}}
Can't possibly imagine how you are feeling.

You and D have just got to sit down and talk this out. You have got to live with this, whatever way it goes, and whatever choices you make. But honey, you have got to be in this together surely.

It would be great to say, the "worst" thing that could happen is have another beautiful baby, who happens to have DS. But in reality, that may not be the case!

Remember all the wonderful advice you have given others in this position. I am sure you would say that you have to do what is right for you, and you will have to go with D's worries as well as your heart!

Think of all the strength and love you have in your heart and I know, you will work out what is right for you and your wonderful family!

love Dingle.xx

Thomcat · 15/06/2005 11:15

I don't know if her can't or won't talk, a mixture of both.
We decided we'd have the test last Thursday and we had it last night.

I think, I'd don't even want to say it.........
I think he'd want to terminate. He won't exactly say that becasue he might not have to say it out loud if the tests come back low risk enough. That's why he just keeps saying that we'll take a step at a time. Frankly that';s all I can do tbh, esp if he is thinking what I fear he might be. What's the ppint in going there if we don't have to. If these tests come back low risk we can stop there. However if they come back high risk and we talk about amnios then yes of course we need to talk and talk and talk and be clear why I don't and he does and somehow, .......somehow we'll have to reach a final decision on what we'll do.

So, let's just hope the blood tests put me in a nice low risk group aye.

I'm not going to know until about the 15th July.
Thankfully i booked my holiday yesterday and we go away on the 21st. (I'll be 18 weeks exactly on the day we fly). Hmmmmm.

OP posts:
Dingle · 15/06/2005 11:16

Just read that back and it sounds so negative. elliott is so right, you have 88/89 chance of a little NT baby in that tum too, remember not to look at the odds through blinkers or rose tinted specs!

Think of how many babies are born NT, when the odd were high, and how many babies with DS slip through all the testing!

They are simply just odds, you have done nothing to put your baby in danger!