Nuchal test, Blood tests... or both

[DuelingFanjo]

Hi there.
I was wondering if you could talk me through this whole testing thing.

I am 40 years old and conceived through IVF. I am just over 10 weeks and am quite confused about the testing I can have.

My (limited) understanding is that the blood tests (triple test) will be pretty pointless because my age will put me into the high risk catagory anyway and all they will then do is recommend an amnio. is that right?

So I am thinking the Nuchal scan is probably better? At least then I get some clearer pointers (fluid on the neck?) and can then make a more informed decision about if I want to have the Amnio?

Can anyone let me know if I am getting this all wrong?

Hi there.

Well... the saga continues.

I called the communities midwife number on the form in the pack given to me at the GPs and they asked me for my address and Surgery name so they could check me on the system. Came back to tell me that I should be booking my own appointment with the midwife at the GP surgery! I explained that I had already seen the GP who had told me to wait for the Midwife to contact me but they seem to think it's my responsibility to make an appointment with the Midwife to be seen at the surgery. had I known this I could have done it last week as I was told she is there on a Tuesday.

Tried calling my surgery and it's closed so I guess I will try again.

Am a little bit confused now about who exactly is responsible for getting me to see a midwife.

Is there not a 'direct to midwife' service in your area. This way you can contact them direct. I would have a look - maybe call your PCT and ask them.

not sure. I am in Wales. I had a number for the Community Midwife team but they told me to go back to the GP.

well try your surgery again for an appointment. BUT if you want to see someone asap your hospital should have an early pregnancy unit and you can ask to be seen there, you may be able to self refer or you may need a referral from your gp. but you would then see a midwife who should be able to inform you about scans, screening tests etc.

i have just had the combined test, which is a nuchal scan and bloods, i paid privately as i did in my last three pregnancies for it (if i lived 30miles up the road i would get it for free)

they will look for markers on your baby like fifi said, in my scan they looked at the brain, the heart, checked the baby had a diaphram and the stomach and kindeys were where they were meant to bed. they also checked the umbilical cord for the amount of veins it has and to see if there was a hernia where it attaches to the baby as this can also be an indicator of chormosonal problems.

they basically had a good look at everything including the bones in the arms and legs etc, the scan was very detailed and i was very happy with my experience and the consultant doing the scan then took my bloods and i had the results in three days

i think you are on the due nov thread with me arent you?

good luck with your decisions and hope all goes well xxx

Dueling Fanjo - any progress? Which surgery are you with? Mine is a stone's throw from UHW, must be the nearest team of GPs to the hospital! Not great, but not as bad as some I've heard of.

Hope that by now you've made contact with someone who can get the ball rolling for you.

Hi there

Sorry shangrila I missed your last post in May.

I have had the results of my scan and bloods and have been given a risk of 1:80.

To say I am now none the wiser is an understatement and I feel like we just threw £180 away for no good reason. I am going to speak to the consultant (Dr Beattie) tomorrow so he can explain it all to me and my DH in more detail but at the moment my conversation with the woman at the clinic on the phone has left me confused.

She says that my risk would have started at 1 in 77. How she is calculating this I don't know, perhaps just from my bloods as I thought my age would put me at 1 in 100. her words were to the effect that if I had had the triple blood test at the hospital it would have given me 1 in 77. With the Scan it drops to 80 and she kept stressing that the scan was good and that Dr Beattie would expect this baby to be healthy but that a 1:80 chance would have to be 'reported as high risk'.

I know now that my choices are exactly what they were before the scan. Either I have the Amnio or I don't. Ho hum.

part of me is scared to find out because I do not want to make the choice about terminating if it's bad. I'm completely calm about it all but the whole thing has done little more than piss me right off

Hi there

Sorry shangrila I missed your last post in May.

I have had the results of my scan and bloods and have been given a risk of 1:80.

To say I am now none the wiser is an understatement and I feel like we just threw £180 away for no good reason. I am going to speak to the consultant (Dr Beattie) tomorrow so he can explain it all to me and my DH in more detail but at the moment my conversation with the woman at the clinic on the phone has left me confused.

She says that my risk would have started at 1 in 77. How she is calculating this I don't know, perhaps just from my bloods as I thought my age would put me at 1 in 100. her words were to the effect that if I had had the triple blood test at the hospital it would have given me 1 in 77. With the Scan it drops to 80 and she kept stressing that the scan was good and that Dr Beattie would expect this baby to be healthy but that a 1:80 chance would have to be 'reported as high risk'.

I know now that my choices are exactly what they were before the scan. Either I have the Amnio or I don't. Ho hum.

part of me is scared to find out because I do not want to make the choice about terminating if it's bad. I'm completely calm about it all but the whole thing has done little more than piss me right off

woops, sorry - posted twice.

4madboys your scan sounds amazing. All they did at mine was measure head to rump and measure the nuchal fold. No looking at the heart or bones at all, though they did tell me the nasal bone was present. It's amazing that I paid £180 and got such a poor exam

Not sure why you think it was a waste of time. What did you expect them to tell you in addition to your personal risk factor? A nuchal screen can't give you a definitive. There was always the risk that you would be in the same position re amnio as you were before the scan precisely for that reason. Some people have a poor starting risk based solely on age but it gets startling better after nuchal screening, some it gets worse. Yours has stayed the same more or less. So I guess you need to weigh up your choices re amnio now.

They can only give you an accurate risk factor. I think I said in a previous post that their starting point is your age, they then factor in blood results and the nuchal measurement to come up with a personal risk assessment.

What you now know is that there is a 1 in 80 chance of a problem - specific to you.

When you speak to the doctor - ask them what you blood measurements were, the size of the nuchal translucency as it may be one of these that has kept your risk the same.

Re the heart - some centres look at the heart, some don't.

The doctor will clear it up for you. The odds still aren't that bad tbh.

Thanks fifitot, I knew it wouldn't be a definite. The only way I can know that is having the Amnio and really I should have just done that in the first place and skipped the testing. I'm probably just being a bit MEH about the whole result.

Though I am veering towards just saying stuff the Amnio and whatever will be will be

I think my % risk is 1.24 % which is tiny. Sure I could be that 1.24% but I might not be. I might just look at it as a 99 % chance I won't have a child with Downs Syndrome instead.

I'll ask them about the blood measurements

Oh Dueling Fanjo, I'm sorry your adjusted risk hasn't given you the clear direction you were looking for. How frustrating.

Good to be seeing Mr Beattie though. In my experience, he will gently guide and explain. I'm sure things will be far clearer for both you and DH after the consultation.

Very best of luck.

Morning.

I have seen Dr Beattie and he's given me the following info.
Contraty to what the woman on the phone said over and over to me the scan actually increased my risk to 1:62 from an initial 'walk-in' risk of 1:77.

My Biochemistry risk was 1:100.

The ajusted risk was 1:80.

My blood results were low to normal hCG (0.7962 MoM) and Low PAPP-A (0.4954MoM).

My DH thinks we should have the Amnio. All I can think at the moment is that I just don't want to know because not knowing means I won't have make a decision about terminating the pregnancy.

I don't want to leave an adult in the world with Downs Syndrome when I die, without grandparents or parents or siblings. At the same time I want to have a baby, I don't want any more heart-ache, I don't want any more invasive stuff done to me. DH at the moment seems to think 'we'll just have the amnio' without understanding that I am fed up of all this stuff happening to me and only me.

I need to speak to my friend about this as she has had high risk with all her kids and has had an amnio and I know won't judge me like my other friends will, but I can't get hold of her.

I guess I will have to have the Amnio so here starts learning how exactly I do this and at least 4 more weeks of worry,

Is it the PAPP A that is the issue? Sounds like it. What was the nuchal fold measurement?

Get back on to ARC on Monday - honestly, talk it throught with them. Your odds are still not bad on the whole. They will talk you through everything to do with the Amnio too.

If it's peace of mind you're after then only the Amnio can give that now I guess, or you have to make peace with your odds. You could always have a 'marker scan' at 18 weeks which might give you more info if you didn't opt for the amnio but it's quite late on in the pregnancy then.......

I feel for you, it's horrible going through all this torment and thinking about odds etc. The only thing I can say is that when I made my decision, I felt comfortable with it - at last.

the fold was 2.4

Though we think the measurement of the length of the baby was possibly not accurate as the woman doing the scan kept on trying to make it move from the curled position it was in and 3 days later at our 12 week scan the baby was measuring much bigger.

I feel like I just want to leave it and just hope for the best but my head keeps thinking maybe it's best to find out.

Hi DuelingFanjo,
You sound as if you are having such a hellish time of it and there's no avoiding it, the situation is hellish. I remember being just where you are now several weeks ago. I had been given 1:49 odds that I would have a baby with Downs Syndrome, based on bloods alone (my hcg was very high). While we knew immediately that we'd love our baby, we were, like you, worried about what would happen to 'our baby' in forty years' time when we could no longer look after him or her. Despite that fear, I decided I could not face the risk (any risk) associated with invasive testing and could certainly not have faced the medically managed termination in any case. I guess that's the decision you have to make first: would you terminate? Our thinking was that a baby might not have DS and yet have a different condition that equally requires a lifetime's worth of care. Your child might be fine but have an accident or illness that means they require a lifetime of care. These are all things we can't test for and certainly can't ensure against.

We're now at 28 weeks and I had no further testing apart from scans. So far they look fine. I have a growth scan tomorrow which I'm terrified about. Having made the decision, back at 18 weeks, though to carry on with things made it all much easier. As someone above said, I've tried my best to make peace with the odds and accept all/any possible outcomes. I feel like Schrodinger's Cat theory in action. Thinking of you and wishing you strength and conviction as you make your decision. . . then, it will all become easier for you, I hope. Big hugs.

Hi there,

thank you for your reply. We have decided that we would terminate for downs and so I have decided to have the Amnio.