Trying not to panic

(87 Posts)
cally0 Mon 21-Mar-16 20:35:52

Hi all,

I had my nuchal scan today. They dated me at 13 weeks and the nt measurement was 3mm. I am 28 years old.

I know 3.5mm is the max limit, but I'm feeling extremely anxious that I'm so close to that limit.

I won't get my blood test results back until after Easter now.

Anyone else get a similar measurement to this? If so, how did things turn out? Know it's different for everyone, just need some reassurance sad

Thanks xxx

cally0 Tue 22-Mar-16 06:08:27

Anyone? confused

bayswatersophie Tue 22-Mar-16 08:50:26

I didn't have this type of result at the scan but had other complications in my bloods. Waiting for amnio results now which is tough. For what it is worth, I have several friends with much worse nuchal measurements than you go on to have babies with no problems.
Thinking of you xx

mrsjskelton Tue 22-Mar-16 09:24:22

Mine were about 2.8mm I think and I had a slightly elevated HCG level and I came back at 1:80 downs risk. DD is 7 weeks old now and perfectly healthy in every way. I'd imagine it's highly unlikely that there is anything wrong.

Large Nuchal measurements can sometimes indicate a heart issue but I doubt it under 3.5mm. A colleague had a 1:6 chance of downs and also had a healthy boy! His Nuchal measurement was over 4mm. Remember they're only markers and you're a year older than me.

I had the CVS test and part of me regrets it but I'm not sure I could ever have gone ahead without that information.

Don't hesitate to ask if you need support!

KittyandTeal Tue 22-Mar-16 14:27:46

I don't have experience of a height nt measurement.

However, remind yourself that 3mm is not raised, it is well within the 3.5mm limit. Also the further on the baby (older if you will) the higher the nt measurement will be becaus the baby is bigger if that makes sense.

Please don't think I'm belittling your worry but I honestly don't think you need to worry. The wait for blood results will be tough but you cannot make a judgement based simply on an nt measurement.

💐 Please be kind to yourself and try not to worry too much x

cally0 Tue 22-Mar-16 19:52:48

Thank you for your kind replies. It was a bit of a shock as I was stupidly expecting it to be a lot lower. Hopefully my blood results will lower the risk xx

cally0 Wed 23-Mar-16 13:01:13

Had voicemail this am from hospital asking to call them about blood test result sad

I've been calling non stop for the last 2 hours and no one answering. Even called all the other depts who said to keep trying no as they are prob busy with a patient

I'm pretty sure this is bad news as I only had scan and blood test on Monday. I am stuck at work and feel like bursting into tears

ajandjjmum Wed 23-Mar-16 13:06:59

How stressful for you. I do hope that the news is not as bad as you fear.

KittyandTeal Wed 23-Mar-16 13:08:48

In all honesty it is probably a call telling you that you are high risk. That means your risk will be more than 1:150 (that's my trust, it might be different across other trusts)

However, high risk means just that, it's a risk factor. I doesn't automatically mean that there is something wrong with your baby.

You should now be offered a cvs or to wait until later on for an amnio. These are diagnostic tests and will give you a diagnosis or a negative screen.

Your alternative is a nipty test which tests foetal dna in your blood stream. It is not diagnostic but if you are thinking you might continue the pregnancy with a trisomy diagnosis it will give you a better idea of a diagnosis.

You will either be high risk for Down's syndrome or high risk for pateu/Edwards. It is very unusual to be high risk for all three.

Sorry you are going through this 💐

mrsjskelton Wed 23-Mar-16 15:49:25

Yes that's definitely a call to say you're in the high risk category but DO NOT PANIC. They'll give you your risk factor and it's important to be rational. High risk at 1:150 is utter crap. If I were given those odds to win a bet I wouldn't be calling it a sure thing. I think they very badly categorise the risks. They'll invite you to book an invasive test such as the CVS or the ammio. If you need more info about the CVS I can offer you that first hand. Or you can go private to have the blood test - a bit of a waste of time in my opinion because all it does is give you another risk factor, not a definitive!

The day I had this phone call I was absolutely in bits and was sent home from work. Looking back, they got me in that distressed state for no good reason. Had I really thought about it, I would have much calmer because my risk factor in my eyes was not "high risk". It sounds like terrible news but they are NOT telling you there is a problem. It's a test that unfortunately scares the life out of women who are already in a vulnerable emotional state and it's not fair.

I hope that's in some way reassuring. Please let us know how you get on X

cally0 Wed 23-Mar-16 17:11:52

They called and said I had a 1 in 8 risk of Down's syndrome.

My husband and I have been discussing the options all afternoon and have decided to go for a CVS. I have it booked in next tues.

I'm absolutely terrified and I'm most scared of having a miscarriage and then being told the baby was actually fine.

I can't stop crying

cally0 Wed 23-Mar-16 17:12:49

Mrsjskelton I would very much like to hear about your cvs experience xx

KittyandTeal Wed 23-Mar-16 17:21:22

The standard risk they will give you for a mc after a cvs is 1:100 however, this is an outdated figure and also doesn't exclude the babies that died after a cvs that would have died anyway from the anomolies or illnesses they have.

Good luck. It is a really worrying time. If you can try and research the implications of T21 and think about the decision you might make.

💐 Sorry you are facing such a stressful time

mrsjskelton Wed 23-Mar-16 19:00:33

Okay, you're exactly where I was in my situation. Did they say what your blood levels were like?

The CVS does carry the slightly higher risk of miscarriage than the ammio but actually this is the national 1% risk - your actual consultant will most likely have a 0-1% statistic for their own procedures. I think my consultant had less than 0.5%.

The procedure itself is a little uncomfortable but you won't feel any pain. The first part is the scan to check baby's heart and position to make sure that it's safe to go ahead. They won't do it if baby isn't in an ideal position.

The anaesthetic is used to numb the area. Then a needle is inserted into the womb - I was warned that there was some discomfort to come as it passes through the wall of the womb but it's just a quick push so try not to worry. The needle is actually an outer tube for a smaller needle/probe. There's a specially trained midwife that accompanies the consultant who uses the second needle to break up the placenta cells. A small warning - I wasn't told how it was done so when she started wiggling it I had no idea what was going on. Mine took 3 goes to get enough fluid but as I knew what was happening it wasn't too bad.

The consultant scans the baby throughout the entire procedure to check for changes in position. I was able to see the procedure on the monitor which was reassuring. Then all equipment is removed and the only wound is covered by a tiny plaster. Then the consultant spent some time checking the baby's heartbeat and let me leave when she was happy. My DD was basically unaware that anything had even happened!

They might also want to take bloods following the procedure.

The only odd thing that happened to me was that I fainted in the hospital lobby but I think that was just because I got myself so worked up afterwards. I just came over all wobbly but was okay soon after.

Three days of absolute rest - then after 6 weeks (or was it 4?) the risk of related miscarriage was gone. I think this is a little extreme to have so much time tagged on the end - I would have thought that if the procedure had put any stress on the baby then it would be within the week.

Results were the next day and all clear. I felt like I shouldn't even have bothered with the test but I know I couldn't have kept going through the pregnancy without knowing.

I've tried not to gloss over anything or sugar coat. Like any medical procedure it's not something I'd choose to do to pass the time but I had an ECV at 38 weeks and I'd actually say that was worse!

Chookford Wed 23-Mar-16 19:20:41

cally my 12 wk scan showed a nuchal of 3.6mm after bloods my combined risk was 1 in 80 for T21/18/13 so high risk I chose to have the harmony test which come back as as risk of 1/10,000 for all three.. I was then given a detailed heart scan at 20 weeks to check the high reading had nothing to do with that... everything was fine and my now 9 month old dd is perfect in every way if not a chunk!

Hope it all turns out ok, remember these risks are just that "risks" they are not a certainty, as much as you can try to stay calm ( I know that's near impossible though) will keep everything crossed for you that you get the all clear.

FlightofFancy Wed 23-Mar-16 19:22:46

Hi cally,
Sorry you're having to go through this. I've also had a cvs so thought I'd share my experience. I had a very high risk of Edwards/patau as well as some possible brain abnormalities on the scan. My experience was very similar to mrsskelton, and I'd add that the specialist midwives were great - ask them any questions as they were more accessible than the consultant. It was slightly uncomfortable, and I chose not to watch the screen so kept eyes shut.

Depending on where you're having it done, a few hospitals are now also offering the blood test (similar to nipty) on the NHS - I think this is possibly only st georges in London.

After my cvs I felt a bit fragile for a couple of days then was fine. They may also do a further test called something like a cgh array - this uses the same sample - which tests for a wide range of genetic conditions, the results take longer so I got the all clear for the three main conditions within 3 days, then the results for other stuff a week later.

Apologies if post is a bit of a stream of thought - I'm writing with one hand while feeding my 6 month old - who was one of the 4/5 from my risk results who are 'normal' (in a far as it's possible to tell!) So hope you get the same result x

cally0 Thu 24-Mar-16 08:20:54

Thank you so much for all your replies and for sharing your experiences. I am very nervous about the cvs but feel more reassured now I know what to expect.

I have had a feeling for a while something may be wrong, so I have resigned myself to the fact that the baby has DS. I cannot see a nasal bone on the scan pic so I'm fearing the worst.

I wish I could have the test done sooner we it's going to be an awful Easter, but tues is their first free spot. I am going to take a few days off work after to recover.

Thanks again xxx

KittyandTeal Thu 24-Mar-16 08:26:07

Take some time to let it sink in and consider your options.

It might just be that your specific scan pic doesn't show a nasal bone.

I have to say there is a lot of anecdotal evidence that people sometimes just 'know' something is wrong. I knew with dd2 that something was wrong, I was anxious right from the start. Getting my results gave me partial relief that I wasn't going mad.

Saying that I was very positive and thought I 'knew' things were from with ds and he died at 13+1.

bishboschone Thu 24-Mar-16 08:34:48

Good luck , I know the wait for her cvs and then the results afterwards is very difficult .. Try and stay distracted as much as you can . I realise this is easier said than done .

bayswatersophie Thu 24-Mar-16 09:08:13

Thinking of you and sending you love and support, the wait is agony but it too will pass. Praying for you that all is well xxxx

Spendysusan Thu 24-Mar-16 11:45:58

Firstly thinking of you thanks
With my most recent baby , my bloods came back with a high risk and we had the option of CVS or going to a private clinic were they took bloods and they were sent to America for results but if inconclusive you had to have CVS anyway .
After much discussion we went for CVS as I couldn't cope with waiting any longer and possibly having to have it anyway .
The procedure Is honestly not that bad.it sounds far worse than it is , I did not even feel the needle go in and it was over and done within 5 minutes . I've had steroid injections that hurt a lot more .
The results came back as normal but we had a brilliant team at the hospital who I found really helpful to talk to whilst waiting to discuss outcomes with .

cally0 Thu 24-Mar-16 16:07:11

Thanks again for your replies. It's comforting to know that others are going through or have gone through this before. Also good to hear that it doesn't hurt for some people as I'm a bit scared about the pain factor.

I spoke to hospital today to get a step by step on what will happen and they said if placenta in awkward position or if bowels in the way they won't be able to do test and I'll have to wait another week and then have an amnio. Really hoping I can get the cvs done as I just want it all over and done with.

For those of you who have had a cvs, did they monitor baby afterwards on ultrasound? I asked the midwife today and she said no they don't as there's no need to? Which o thought was a little odd

Xxx

Spendysusan Thu 24-Mar-16 18:05:15

From what I can remember you don't have any extra scans and the baby is not monitored but you are told to come straight back or the out of hours unit of you feel any discomfort or you think anything is wrong .
I'm sure I saw recently that the NHS was introducing the blood tests that were / are currently only provided if you go privately to be tested so that CVS was only done if they came back as a high risk ( they can give a yes or no answer normally ) I'm going to have a look and see if I can find the article , or perhaps ask the hospital if that's something they can provide .

Spendysusan Thu 24-Mar-16 18:06:39

This is the article

http://www.nhs.uk/news/2013/06June/Pages/New-Downs-syndrome-blood-test-more-reliable.aspx

cally0 Fri 25-Mar-16 07:04:48

Thanks spendysusan. They said I could do that blood test but that it was only offered privately and not on the nhs. Perhaps it's not yet in use at my hospital on the nhs.

My husband and I discussed having this test, but seeing as it doesn't give you a definitive yes or no (only another risk factor, albeit more accurate), and that they can come back inconclusive and results take 2 weeks, we decided against it.

If my risk was lower (1 in 100 for example) I think we would've done the blood test. But because my risk is so high we just want to know one way or the other and to find out soon.

Xx

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