Nuchal fluid measuring 6.7mm at 12 week scan. Hand holding needed, please ...

[Catra]

Today I went for my first NHS scan, at 12 weeks and 5 days. I had been feeling cautiously optimistic as we had a private scan at 9 weeks which showed that the baby was growing as expected and had a strong heartbeat. I'm 38 and this is my first and much longed-for pregnancy - after weeks of nausea, dizziness and exhaustion I had finally started to feel human again and now we are faced with the news that the nuchal translucency measurement at the back of the baby's neck is so high it that indicates an 85% risk of chromosomal abnormalities (Downs Syndrome, Edwards Syndrome, Patau's Syndrome and Turner's Syndrome) - an average measurement is apparently 2mm and anything over 3.5mm is considered extremely worrying, so basically my result is through the roof.

Needless to say, I feel like my heart has been ripped out. The midwife took a blood sample today and I now have to play an agonising waiting game until Friday or perhaps even Monday until I know whether I need to go for a CVS or not (where they insert a needle into the placenta and take a sample to determine the result, which in itself carries a risk of miscarriage)

Has anyone else experienced this? Sorry if I don't sound particularly coherent right now, my head's all over the place and I could really do with some hand holding x

[allthecheese]

I don't have much info, other than Expecting Better has a fantastic chapter on CVS/Amnio, which may help alleviate some of your fears. It's absolutely worth a read if you have time.

[BrokenBattleDroid]

No experience myself but didn't want to leave your post unanswered , hugs, and a handhold.

Do you have a partner (or anyone else) for support?

[Patriciathestripper1]

I was 43 with my Dd and had same with nuchal so made descision to have amino and take it from there luckily got the all clear.
Sending you love and best wishes

[Patriciathestripper1]

Fwiw the amino was nothing like u expected and was fine.

[NinaMarieP]

My nuchal measurement was fine but my blood test results were awful. I then had the CVS and everything was fine. It's a horrible time waiting for test results, thinking something might be wrong with your baby. You have my sympathy. I couldn't even go in to work that week because I was so upset. There's nothing anyone can do or say to make it better while you're so worried so just be kind to yourself and do what you can manage until you get results and know what you're actually dealing with.

[Catra]

allthecheese Thanks for the recommendation, I will check out the chapter.

BrokenBattleDroid Fortunately yes I have my husband who is on annual leave right now so he is home with me. My parents and close friends also know and are being extremely supportive.

Patriciathestripper1 I'm glad to hear that you got the all clear - do you recall what your nuchal translucency measurement was? It appears that the higher it is, the greater the risk is proportionally.

Thank you for the lovely Mumsnetters x

[AppleBlossomTimeNow]

What an agonising time. Try to cross bridges when you come to them xx

[emily127]

I've had a similar kind of experience, everything was fine at 12 week scan but at 20 weeks they said the nuchal fold shouldn't be over 6mm where as my baby's was 7.2mm. We were absolutely terrified as, like yourself, we were told about all the increased chances of different things. We decided to get the amino at 32 weeks so that there was only a risk of early labour and not miscarriage but I changed my mind a few days before. They have done numerous scans since and everything else has been perfect so with just one marker, our chances increased 10x as much but still leaves us with 1/7850. It's such a daunting time - sending you lots of hugs! Hopefully everything turns out okay for you

[Catra]

AnUtterIdiot Yes, we are considering the Harmony test - it's £400 and we really don't have that kind of money to hand but my parents have offered to help which I feel terrible about in itself. It's non invasive so there's no risk of miscarriage but when I spoke to the midwife today she strongly advised that we should have the CVS as well because the Harmony test only screens for Downs, Edwards and Pataus, not Turner's Syndrome and heart defects, apparently.

[Catra]

emily127 Hugs to you too, I really hope that everything works out for you and and your baby.

[Patriciathestripper1]

I can't remember exactly but is was quite high in the 75 percent range for risk of downs etc so we then decided on an amino. it was 10years ago now.
Where we live now there are a lot of downs babies and looking back the fear of it is not as bad as the reality. I think I could quite well have coped with a downs baby now but at the time I felt terrified. .
Sending you a hug and good wishes

[SeatOfMyPants]

Cvs outcomes re miscarriage risk are I think much better than currently offered stats might suggest. Check your hospitals specific rates. I had a cvs and I was very confident in the doctor who peformed it and - yes- the benefit is that it's a full screen: you can be pretty confident that you've checked for everything. This time we had a harmony due to high results (we got this with our hospital) but therss still a niggle there about anything else that might be wrong....

Are you near london? I'd highly recommend the Fetal Medicine Centre for a private test. It hurt our credit card for quite some time but it's seriously good at what it does.

[Catra]

I got the results of my blood test today (earlier than anticipated) which indicate that the baby has a 1 in 5 risk of Downs Syndrome and a 1 in 36 risk of Edwards Syndrome and Patau's Syndrome . So while that's not quite as bad as the odds we were given yesterday based on the nuchal translucency alone, it's still extremely worrying.

I've booked to have the private Harmony test done on the earliest date possible, which is Monday and then I will face a wait of at least 1.5 weeks while the blood sample is sent to the US for testing. I honestly don't know how I'm going to stop myself from going insane with worry in the meantime.

[ImGoingForATwix]

It's an awful feeling of helplessness and anxiety and so much worse with all the waiting for tests and results. Those measurements can be totally off too. I know it's easier said but the best thing you can do in the meantime is remain as calm as possible

[Theymisheardme]

I'm really sorry OP, I can't imagine because all ours came back low risk and then DS was born with mosaic t18 (t18 being Edwards) so only a proportion of his cells are affected.

What I would say is that the survival rate for babies with Edwarsa or Patau is higher than the medical literature suggests. Babies do survive. I have friends with beautiful, loved, happy babies with t18 and t13. If the results come back against what we are all hoping, there is support and hope out there and there's also FB groups where you can find that hope.

Feel free to pm me

[LornaMumsnet]

Hi folks,

We're just moving this over to Antenatal Tests for the OP.

[CEDY]

Hi OP. I've had a similar story with my current pregnancy. N.T of 5.8 at 12 weeks so risk was 1 in 12 for Down's etc, probably about 70% likely to have some abnormality. However, since then baby has passed every test - CVS/full karyotype came back clear and cardiac scans at 15 and 21 weeks didn't find any heart problems.
It's really tough waiting for all the results to come through. I'm glad we went for the CVS as soon as offered because it seemed like every other scan marker/NIPT would still leave a degree of uncertainty.
Hope you've got good people around you for support. I chose not to share with my family, but had good friends to talk to (with a range of opinions on what they'd do in our situation) and I found that helpful.
Wishing you all the best during this time xx

[SeahorseBlue]

Hi Catra, I experienced this in April (I've posted quite a few times on here about it) at our 12 week scan the NT measurement was 6.6mm. The blood results gave us a greater than 1:5 chance for all 3 trisomies. We were devasted.

We had the harmony test which came back clear, but unfortunately I felt that this only gave reassurance for the 3 trisomies and as we were so high risk we opted for an amniocentesis. We didn't get the harmony results until 15 weeks, so had an amniocentesis rather than cvs, apparently the risks of miscarriage from amniocentesis is slightly lower.

I have to say in my experience the amniocentesis was nowhere near as bad as I had imagined. The results came back clear of any chromosome abnormality. The waiting was awful. We've had scans since and no other abnormalities have been found.

Cedy, nice to hear you are doing well!

[MommaGee]

How are you doing Catra?

[Catra]

Thanks for sharing your experiences CEDY and SeahorseBlue - it's good to know that it was a positive outcome for both of you.

Since last posting I've had my NIPT appointment. This took place on Monday and was a thoroughly frustrating experience. The sonographer failed to get a blood sample from me despite trying for over half an hour and leaving my arms covered in bruises. No other professional has ever had a problem taking blood from me before which made me wonder how much training he'd had. At one point he did manage to get some blood in the tiny tube that leads to the larger one but then it just stopped despite me pumping my fist for several minutes with the needle stuck in my arm!

I was told that I would need to come back the following day when someone else was available to take the sample which of course would add another day to our wait for the results. This in fact turned into two days because of a member of staff calling in sick so it was actually Wednesday before the sample was taken.

Second time around, a phlebotomist successfully took my sample with no fuss at all. When I explained to her the issue I had experienced with the blood stopping mid-flow she said it sounded to her as though the sonographer had put the needle straight through my vein when attempting to take the sample, as opposed to into it. How reassuring to know that such levels of competence exist ...

So now my DH and I are facing the agonising wait for our results. I'll receive an email if it's good news and a phone call if it's bad news - the opposite to waiting to hear back about a job interview I suppose, only immeasurably more nerve-wracking .Apparently the results take 7 - 10 working days although off the record they said they've been coming back in 5 days because they're now done in London as opposed to being sent to the US. Therefore I would have thought we'll get the results any time from Weds 9th Aug onwards.

I've been doing my best to try and hold it together - DH & I have been remodelling the house, originally of the mindset that we wanted to get everything in order before the baby came. Now, however, with a question mark hanging over us like a Damocles Sword the project's serving primarily as a distraction and a means of keeping us busy.

The other day in the shower a thousand thoughts I'd been keeping at bay swept in - all the reasons why I wanted this baby so badly tumbling over each other. For several years before conceiving I'd felt rudderless - stuck in a limbo of being utterly ready to be a mother and yearning for it to happen. When I found out I was pregnant and for those first blissful 12 weeks I walked around in a bubble of sheer joy that I hadn't experienced for as long as I can remember and I felt an overwhelming resounding sense that this was the direction my life was meant to take. I honestly don't how how I'm going to find the strength to go on if all this is ripped away from me. I'm 14 weeks pregnant today and have a very visible bump already. With every day that passes I feel increasingly bonded to my baby. I'm so very scared about what next week may bring.

[NinaMarieP]

How awful that they managed to make this even worse for you.

I felt very attached to my baby at 13 weeks and had several long conversations with him about how I loved him no matter what.

I really hope you have good news in 5 days.

[MommaGee]

Oh Catra That's crap. Like you need any more stress atm!!!
Praying for a email in 5 days time xx

[doingitallagaintoday]

Really hope it's all clear for you

[Catra]

On a lighter note, today when I was trying to explain to my somewhat senile FIL about the Trisomy tests he misheard and thought I'd said that I wanted to "try sodomy." I have to laugh otherwise I'd cry.