i've just had my nuchal scan and its high risk- what now?

[jackamolsmum]

I'm just so shocked by this- i'm 28 and didn't expect it to show this. Has anyone else been in this situation?

I was offered a CVS test there and then but decided to wait until friday when the bloods are back. they are fast tracking me but i'm just so shocked by this.

oh poor you that is a difficult situation to be in. I don't have any advice, just sending you a hug whilst waiting for persons who have experienced this to come along

I had a high result which for various reasons i just didnt trust. (i am 27) Mine was based just on the scan and was 1:135 i went for a second scan privately where they combined it with bloods (wasn't offered bloods in my hospital) and got a very very different and more positive result. 1:9000.

What was the stat they gave you? even if it remains high after the bloods nothing is a certainty. Someone on my antenatal thread said to me i was more likely to get hit by a train or something than have an abnormality with the baby, based on the first set of results, it helped to put things into perspective.

I was also really shocked and very upset, once you have seen the baby is in there and alive you just think its all going to be fine.

I know its easy to say but dont panic just yet, go with your gut instinct, wait for the bloods, have a second opinion, whatever you feel. Its very early days.

Good luck xxx

If you do decide on a second opinion i had mine at the fetal medicine centre in London as recomended by ladies on here. £150 so not that cheap but i was pleased i had it before i made a decision on an invasive procedure.

Hi,

Really sorry to hear this. I am 31 and got a high risk result as well just based on the scan alone - measurement was 2.8mm and my risk was 1:63 - I cried for two whole weeks. We opted for a CVS and the results came back normal and I have a very healthy 2 months old baby boy now. Making the decision to have the CVS was hard but we needed the certainty and I was already so stressed out that there was no way I would have lasted till 16 weeks for the amnio. I found the procedure itself bearable but I did have mine done at King's College, which is headed by Professor Nicolaides who also heads the Fetal Medicine Centre. You can have a CVS done at the Fetal Medicine Centre itself by the professor (but I believe he only does this on a Wednesday and you do have a small window of opportunity for the CVS test, which can only be done I think before 13+6 weeks). GL!

Ax

it's up to you what you decide.

spend some time thinking about what you would do.

there are some mothers of children with down's syndrome here on the board who would be happy to discuss their lives with you.

It is clear from your post that you are shocked but I have to say there is always a risk with any kind of test that you will get difficult news.

You need to have a think about what your options are and what you are going to do with each one if you go that way and get more results.

i'm not sure what my risk was- all they said was that I was at a higher risk. Do you normally get a print out for nuchal fold? I'm sure that last time (with DS) I had a print out to go in my notes which had all the measurements and due date on.

Up until that point she said that everything looked normal and I was 13 weeks + a few days.
Tbh I was in such a state of shock that I didn't even ask the due date! I think she said I was 0.4% over what was normal but that was it.

She also refused to take any money for the pictures which made me feel even worst! We were then seen by the screening midwife who asked us if we wanted to do a CVS today.

Sounds a bit shoddy to me. They should explain everything to you clearly, including your risk numbers etc. I would ring them and insist on getting your notes from the scan. How on earth are you meant to make an informed decision without key information?

If you are 13+ weeks, you really are at the end of the time limit to do a CVS. Otherwise, it's waiting for the amnio when you are past 16 weeks. Even with my risk (1:63) which sounds high, I still had a 98.4% chance the baby would be healthy. So it's a really personal decision as to whether you go for invasive testing.

Call the hospital now!

The thing to remember is that "high risk" is quite a subjective thing. A risk of 1:50 means that out of 50 babies with similar measure emtns, 49 would be absolutely fine. I wouldn't back a horse at 50:1 - would you?

OOoo that sounds a bit naughty of them. They really should give you more than 'high risk'! I mean what is considered high risk to some is prefectly acceptable to others. They should be able to tell you the measurement of the nuchal fold. I'd wait for the blood results to come in before you panic.

I had a 1 in 2 chance of trisomy 13 (and Edwards) with dc2 but after a CVS (which, we thought long and hard about and only made the cut off point by a couple of days because of dithering) we got the all clear...and due in 5 weeks You certainly shouldn't feel pressured into accepting a CVS there and then.....

I also went to the Fetal Med Centre...which was pricey...but fab, especially as my private scan (via the NHS consultant) was sorely lacking....well, just plain wrong!

Call them and demand more info - you need facts - and wait for those bloods if poss as those results can throw everything into a whole new light. With dd I had about a 1 in 200 after the scan which, once the blood results were in, became 1 in 2,300!! So worth the extra wait. HTH!

Hi I phoned them and they said they couldn't give me a risk until the blood results are in.

They have the baby's measurements too as they wanted to do an assessment before they call me to let me know what the outcome was (she did say that she was pushing for the bloods to be done by tomorrow).

They also called me again this afternoon to see if I wanted to book the CVS if I didn't want to rely/wait on the blood tests. I said that I wanted to wait for the bloods but now feel worried that I may not have the option of a CVS if I leave it til next week?

Am confused- I thought the bloods would give a definite answer? so when is the cut off for a CVS? What a nightmare- I just never expected to be in this situation (which I suppose nobody does {sad}

Whether or not to have a cvs can depend on what you would do with the results. If you want more information to be prepared (but wouldn't terminate with a positive result) then you can request more detailed scans later on in the pregnancy instead for example.

I have friends who have taken that option (with the outcome at birth going both ways- although the detailed scans got it 'right' iyswim).

cvs is done earlier than amnio (which would be another option for an invasive test) but in the case of a mosaic won't give a clear result whereas an amnio would (wrt to trisomies anyway).

Can you get any counselling with someone to go through all this with you? It's hard to make a decision without knowing what the implications are.

HI jackamolsmum, the bloods will NOT give you a definitive answer. The blood test and scan are only SCREENING tests and will only give you the risk. Only a CVS or amnio will diagnosed a chromosonal defect for sure...

There is a support organisation you can speak to.

www.arc-uk.org/

Good luck.

Thanks everyone for all your posts. I'm going to wait for the bloods to come in tomorrow (fingers crossed) and then depending on the outcome look into getting a second opinion done at the Fetal med centre (as it seems to have good reviews) before going ahead with the CVS.

I wonder if the nuchal fold takes into consideration the size of the baby. My DS was huge (a very chunky 10lb 2oz with a 38 cm head circumference). He was scanned all the way through my pregnancy as being really big. Back then they didn't do the nuchal fold so I can't help but wonder if it would have showed anything up given his size?

Something to ask about the nuchal is the overall size of it and what that might indicate. I asked at Kings (run by Prof Nicolaides) and was told that a very large nuchal measurement often indicated XO (Turner's syndrome) a condition that generally has little disability attached to it (sometimes there are learning disabilities- usually mild and infertility).

My friend whose baby had a very large nuchal fold was found to be possibly be carrying a baby with an XY/XO configuration. They couldn't tell whether the XO cells were in the baby or the placenta, but he was born a boy and afaik was developing normally (we moved away and lost touch).

Prof Nicolaides is the person behind the fetal med centre- so they should be able to answer that question about different sized nuchal folds.

Good luck for tomorrow.

hi, i was given 'the wrong' figures for my nuchal fold. ( 1 in 50) - i was 38 at the time but even so i was really shocked. i didn't believe it either. so took myself off for 2 private scans - both of which took the risk down to something like 1 in 3000... guess i am saying get a second opinion if you possibly can, was worth every penny. hospital apologised for mistake in the end although the sonographer apparently insisted she had seen what she had seen. my DS born with no abnormalities or problems, just as both 2nd and 3rd opinion docs had said the moment he came up on the screen.... one of them said to me it is all down to the skill of the person doing the scan, interestingly both of them were in their 50s. i know it is a worrying time, lots of experience and knowledge on mumsnet i found it hugely helpful at the time. ps if you do go for a second op i cANNOT recommend bill at viveka highly enough if you are in london by the way.he is wonderful!!

It seems you have not been given very good care if they haven't even told you the odds. 'High risk' can mean a 1% or 2% chance - or even less.

If they'd said the nuchal showed a 2% chance of abnormality, wouldn't you think that was low? I would.

No one here can give you guarantees but there is a considerably higher chance of you having a healthy baby than not.

Good luck.

I had a high risk result with the triple blood test and then had an amnio. It all turned out fine (the blood test was a false positive) but was very very stressful and I really feel for you. It spoiled a lot of my pregnancy and put me off testing for anything forever (I refuse the blood test now).

Check out the website for ARC, the Antenatal Results and Choices charity, they offer all sorts of advice and inforamtion and have a helpline I think.

Best of luck, sending you hugs.

If you do go for a CVS, worth getting that done at the FMC too as they have a very very low rate of m/c afterwards.

Hi just got back from the Fetal Med centre. The scan showed that I had 2.9mm nuchal measurement which is just above average.

They were so good- they took a good 45 mins to do the scan and looked at lots of factors rather than just the nuchal fold measurement (they took this x3 to be sure). he was also really patient to ensure that the baby was in the right position to get the measurement. He explained that there can be a huge difference in this measurement if the baby is even slightly at an angle.

Everything was normal (nasal bone/face angle/blood flow/organs ect) and this combined with the (instant) blood tests revealed that my odds are 1:12650 which seems pretty good to me!

Because of the slightly higher nuchal measurement he recommended that I have a cardiologist scan of the baby's heart at 20 weeks to ensure all was ok. He wasn't jumping up and down panicking (like at the hospital yesterday)and clearly explained the risk factors to us.

Have decided that with those odds and given that everything else was normal, we're not going to go for the CVS.

Wow what an incredibly stressful 2 days! If I ever do this again I'd probably fork out for a private scan for my peace of mind and sanity. Clinic was fab-I'm wishing I was rich and could afford private health care for the birth! (mmm at the Molten Brown products in the glam loos!)

Thanks so much everyone for your posts. You really helped me get my head around this. Am glad that I made the decision for 2nd opinion today- phoned hospital today and they said that the bloods won't be back now til Monday-i'd be going crazy over the weekend if I had to wait til then! am a bit at their attitude in hindsight now.

X

I agree with you about the FMC. I had a viability scan there this last time and wished I could just move in . Glad to hear you sounding so much happier!

Hi jackamolsmum,

Thanks for updating! Been thinking about you and keeping fingers crossed for you. That's really good news. Seeing the nasal bone is a really good sign.

I also had a fetal heart scan at 20 weeks and had that done at King's College. Are you in London? If you are, get your hospital to refer you to King's if possible. They are the best (some of the same people work there as well as FMC as they are both headed by Prof Nicolaides. FMC is a charity btw!). We had a really good heart and anomaly scan at King's and everything looked very healthy. Unfortunately, one of my hormones was elevated during the blood test and I had to have a 28-week growth and that was at my local hospital and the care was fairly shoddy compared to King's and FMC. . In the end, I opted for a 32-week wellbeing scan at the FMC just to make sure everything was okay and had such a wonderful scan experience there (I went there for an early scan at 7+ weeks).

GL. Keep us updated. I do think your local hospital is shocking in their attitude. You should complain and also think seriously about whether you want to have your baby there. I had a shocking birth experience and even DH says next time we are going private!

Ax

Its tricky- I do technically live in London but after my last truly shocking birth experience (in one of the worst areas in the UK apparently- E.London/Redbridge) I registered myself elsewhere for the antenatal care and ultimately the birth as I know I will need a planned C-section this time around.

Nothing can possibly be as bad as my last hospital experience so this aside i'm hoping it will get better. The hospital have only been doing the nuchal fold scan since January so maybe its due to lack of experience by the sonographer there?

I am tempted to go for the anatomy scan at the FMC tho and get the results sent to the hospital for peace of mind- I can't be doing with another hysterical reaction! I can't take the stress!!

Good news jackamolsmum. If you can stretch to another private anomaly scan, I think I would.
Peace of mind in pregnancy is worth whatever you can afford

My hospital just phoned and said that they made my risk 1:190 with the bloods.

Am so glad that I got another opinion as they have only made that assessment on the nuchal measurement and the bloods.

Also just found out that I can be referred to Kings for the cardiac and anomality scan.