Not good 1st OSCAR test, considering Fetal medicine Unit - Prof Nikolaides

[Belgrano]

Hi everyone

I'm pregnant with no.2 and had my Oscar test yesterday, which combines bloods and nuchal fold scan. Bloods were fine but nuchal was 3mm of fluid - apparently borderline. I am 30 so my age related risk is 1 in 842 but my personal risk is 1 in 386 - almost double what it 'should' be. With DD 2 years ago it was 1 in 15,000 - a massive difference!

I'm scared now. I am thinking about making another appt for a nuchal - and possibly a CVS - with Prof Nikolaides up in London who is supposed to be the best of the best. I've seen a few mentions of him on here - any tips or advice on this idea welcome.

I don't even know if I would want a termination (respect to those who make different decisions) even if I decide to do the CVS and it is positive for chromosomal problems. The effect on my DD's life is the only compelling factor in favour of termination, but I don't really see Downs as the end of the world. I suppose the reason I am considering a CVS is to get peace of mind because secretly I can't believe it's really a possibility - must be in denial - although there's obv. the risk I could end up with the opposite result from what I want.

Is it responsible to take the risk of miscarriage from CVS (four times my risk of having a Downs baby) if I probably wouldn't do anything different even if I knew? Gaaahh...!

I was hoping for some advice from people who have been here before please. Sorry it's so long.

Thanks

Hi
Just wanted to day I went to the Fetal Medicine Centre for my scan and they are very good.

If you look at the ' Petrified. Just got 1 in 38 chance of Downs from Nuchal scan blood results. Advice please.' thread you'll see lots of information about the FMC and links to the lessons Prof Nikolaides has on their website.

I had a risk of 1 in 80 and 1 in 62 with each of mine (I was I think 35 and 38). Whilst this still meant that I had a 98% chance that everything would be fine, I did have CVS with Nikolaides both times as I didn't want months of wondering when there was an answer available. Also my risk factor pretty much cancelled out the miscarriage risk of a CVS. The first time I was referred at King's, the second time I went to his FMC. Be prepared for a long wait! We spent several hours shopping in Marylebone High Street - I think he was runnning over by several hours, but they will take your mobile and call as long as you are nearby. They were fine and very professional.

Get the bloods and nuchal redone at the FMC - tell them about your score and about maybe wanting a CVS as they only do them on certain days. Often when you get them redone at FMC the result can be quite different.

Thanks everyone that's a very helpful thread. I can never seem to find threads until they are pointed out to me. is there some special knack to the search function?!

OK I've made an appointment with Prof Nikolaides at the FMC next Wednesday when I will be 13 + 2 - not sure if that is too late for a CVS....? Of course that's only if he can't reassure me and I decide to have one. I feel better knowing that I will have the best of the best's opinion (and his hand on the CVS needle if it comes to that). I've read nothing but great reviews of him on here.
I'm almost more worried about the other things a thick nuchal fold can mean - heart defects etc and the risks of Edwards and Patau's rather than the Downs, which isn't really all that bad is it?
Thanks for your help and please cross your fingers for me!
I won't be having another nuchal test if I have another baby - it's not worth this worry!!

Glad you're getting a 'second opinion' Belgrano, I hope you get some reassurance. I was more worried about heart defects etc. too, they are going to check baby again completely next week and another detailed heart scan at 22/23 weeks.

I really hope that your risk gets lower, but depending on what FMC say maybe you could ask NHS for heart scan? I mean, the difference between 3mm and 3.5mm is bloody nothing really!

Re CVS - I was told to 'make a decision' (bastards) before 13 weeks, so at 13+2 you should be ok, I think they do it between 10-13 wks.

And re nuchal, I'm with you there - I didn't even want one this time and they just did it! Will write it on the front of my notes in red next time and if they dare to start lingering over my poor baby's neck...

Will be thinking of you next weds let us know how it goes.

Thank you so much Ephrine. You've been a real support . It's very, very helpful to have someone who's going through a similar thing at the same time...
Have you accepted your unexpected result now then? Do you feel happy and able to enjoy your pregnancy? That's what I am aiming for and just trying to decide what 'numbers' I need from the FMC to feel that, and what number would make me say 'ok please do a CVS so I can know for sure'. Of course that gives me a 4 times greater chance of miscarrying than I have of having a baby with problems but I am hoping Dr Nikolaides being so skilled would bring that 1% probability down a bit.
Decisions and probabilities.....yuck.
(On the plus side I feel slightly less sick and haven't vomited for over a week now!!)

Yes its def good not to be the only one, though I wouldn't wish it on anyone else iykwim.

Hmm I know what you mean about what numbers would I be happy with. I think a result like Georgiegirls revised result on the '1 in 38 nuchal' would be good, something like 1:600 / 1:700 wasn't it?

I think I am more relaxed about it now but I've had more time to adjust - found out about the nuchal result on 22nd December, and that 1:27 was horrific, but then the bloods brought it to 1:140, and now the heart scan being clear, I just feel better abut things - although I bet they find me more stuff to worry about next week.

When I was pg with DS I had a lot of extra scans and they were always finding stuff to worry about - enlarged kidney, disproportionate stomach measurement(baby not me!) , polyhydramnious...and all of that turned out to be nothing, so in a way I'm used to scans blowing things out of proportion if that makes sense...

Btw if you decide to go for CVS with FMC I do think their / his MC rate is a lot lower than the national average. And thank god for no more morning sickness. Tis hard enough being stressed without throwing up000000 all the time!

Off up to London on the train tomorrow to see the Prof. at 12.30. Please think of me if anyone reads this before then. Dead nervous but pleased to be getting this all straightened out as the not knowing is horrible.
Aaaahh!

Good Luck xx

Hope all goes well at FMC for you - I also went there for my scans and they were fantastic. You are in safe hands. Good luck

Belgrano have posted on July thread-hope things went well today have been thinking of you, keep us updated.

I hope it goes well and you get answers.

Thank you all for your support. Bad news I am afraid - my risk has increased several times over as the nuchal has increased to 4.1mm since last week, and my bloods are not great - the hormone levels have fallen since last week and are right at the bottom end of normal. Does this mean I may miscarry soon anyway does anyone know? Baby was really still today, hardly moved at all. I have been issued a risk of 1:46 for Downs and 1:90 for Edward's and Patau's after Professor N had a look.

God this is terrifying.

So I had a CVS which was surprisingly not too big of a deal, Prof Nicolaides was amazing at it and it doesn't even hurt.
How on earth am I supposed to wait until Friday? And I am not sure if I will rest easy then either - surely there must be something wrong, or is likely to be, with such a high nuchal reading. Something that won't become apparent until later in the pregnancy or at the birth I mean.

Any answers or similar experiences so welcome. Thank you all.

So sorry you have had difficult news.

We were told our baby might have ES too.

Do you know what you are going to do next?

really sorry to hear this try and keep positive. Will keep my fingers crossed for good news for you on Friday x

Oh God I'm so sorry to hear you've had even more worrying news.This may be no use to you but try and remember - out of 46 babies with the same measurements / blood results as yours, 45 of them still won't have Down's syndrome. And also remember, you will get a definitive answer either way on Friday as to the Downs / Edwards and other chromosomal probs. If its not those, ask your hosp / MW / FMC to send you for cardiac scan as that's another thing which can have high nuchal. Did baby have nasal bone / normal femur length etc.? You may be also able to have an early abnormality scan like me (just had one at 15+5 weeks).

PS I wouldn't worry about not moving too much, baby might've been sleeping.
PPS Glad CVS didn't hut
PPPS Which hormone levels had dropped, PAPP-A or beta HCG?

Have no personal experience to draw on but just wanted to say my thoughts are with you.

I have been through this recently and it's terrifying. we had a scan at local hospital, had nuchal of 5.2mm and they were very negative about it. Went to see Prof Nicolaides two days later and it had gone up to 8.2mm. He said we had a 95% of some serious problem (downs, edwards, heart/skeletal defect, genetic prob), he did CVS (he is so lovely and gets you to squeeze his arm while he does it) and had results 3 days later. No sign of chromosomal probs. Still had very high chance of heart or skeletal probs though (still 90% or so). Went for follow up scan with him at 14 weeks and a detailed heart scan. Fluid had reduced by half and he could see no abnormalities. We now have an excellent prognosis and only a small chance there is still something wrong, if the fluid goes by 20 weeks we have the same chance as everyone else. So I would say don't panic yet (difficult) you are definitely in the best hands, Prof Nicolaides is fantastic. We had a much worse prognosis (1 in 4 for downs and edwards) and it's slowly working out for us. Don't give up hope. Wishing you luck x

That's amazing deleting, great news for you. I am very pleased for you. That's a very inspiring and hopeful story. Have you heard anything about why the baby has a high nuchal if it isnt a chromosomal thing and the heart looks ok? I mean is it just something weird that some babies do? I couldn't really get an answer on that.
Yes he said to hold his hand while he did the CVS and I was completely confused as one of his hands was holding the ultrasound thinngy and the other had a socking great big needle in it so just clutched onto the hairy arm instead! He was fabulous, specially when i started freaking out a bit.

HI all
Just wanted to update - clinic rang about an hour ago and said that we came back negative on everything they tested for! I can't believe our luck and feel so incredibly lucky and blessed. I was really expecting the worst and almost wishing for a miscarriage to take the decision out of my hands, and dreading the first movements in case it was a very damaged baby that would then die etc etc. And now there is a baby boy to expect and a pregnancy to look forward to. My god! Absolutely incredible. They said I don't even need any more scans unless there is bleeding or cramping, until the 20 week one.
Thank you for all your thoughts and support, and thank you God.

great news . enjoy the rest of your pg.

brilliant news, so happy for you!!

did they explain your blood results? these things baffle me - they seem completely inaccurate....

Fantastic news Belgrano, what a relief. I know what you mean about the miscarriage, we were thinking the same. I also thought that if there was something wrong, if it was REALLY wrong and there was no chance of life, then at least we wouldn't have a such a difficult decision to make or feel guilty about a termination. I know some people on mumsnet don't have these tests because they know they would carry on with the pregnancy anyway, but I don't have such clear cut views. I don't think they really know why the fluid appears if nothing is wrong, perhaps something was wrong and righted itself, or it can be a normal variant, although this is our third and we never had it before. Anyway, so pleased for us both! When are you due?