Twice normal NT measurement, further local scan tomorrow for referral to FMU - handholding please

[MaryThorne]

I had my dating scan on 26th April when I turned out to be 10+6, not 12 weeks as I'd thought. The NT measurement was twice normal although we weren't told what it was. Unfortunately because of the overall measurement the FMU at the local large hospital wouldn't accept the referral at that point and since we were on holiday last week, the first date available to have a further local scan to be referred to the FMU was tomorrow. Apparently I should get seen by the end of the week.

I've managed to feel relatively normal whilst we've been away (and I wanted to make sure DS (3.7) had a happy, fun time) but it's really hit me today and I just want to know what the situation is. We've decided to have the CVS and from what the screening coordinator midwife said, even if it's not a chromosomal problem then it's likely to be a heart problem which would require further tests to see what the prognosis is. I feel in a horrible state of limbo and very lonely.

Just looked at my handheld notes. NT measurement was 6.6mm.

So your local scan is tomorrow?

I've been referred with a Nuchal Fold previously which measured 3.9, I had the Harmony test and all turned out ok.

I've also had friends who have had the 1 in 100 turn out to be them, confirmed after an amnio who had a termination; and another friend who had a 1:2 chance of having a baby if not with a chromosomal issue than a serious heart problem (she refused further tests) turn out to be the lucky one.

All I have to add is it can go either way and I know you know that already.

Best wishes OP, it's horrible news to have and I know such an anxious time. I hope it's good news for you, and you get the results quickly

Hi, here with a handhold, I'm so sorry you're going through this. I'm in a pretty similar situation, if it helps to know you're not alone. I had a high NT at my dating scan.

Slightly complicating factor is I had a low risk Harmony result (I sadly had a termination last year after a diagnosis of a chromosome issue so wanted certainty this time) so the consultant suggested we wait for the detailed and fetal heart scans before further tests. It has been a long six weeks since the initial scan, so I understand the horrible in limbo feeling.

I'm glad you managed to get away, it's so hard to keep busy and try and function as normal with the uncertainty hanging over you.

We had a high nt measurement. 4.5. Combined with bloods gave is a 1:5 risk. We had the harmony test and were low risk. DD was born healthy. We did get extra heart scans towards the end to make sure all was ok and thankfully it was.
Harmony is approx £400 and is available privately. Results within a week. Non invasive as it just requires a blood sample from you.
Good luck x

Thanks both for the flowers.

@Whymeagain1 I'm so sorry to hear that you're going through similar. It must be even more awful after your earlier termination. Handhold for you too

I'm supposed to be working from home today but I'm useless work wise I all I can think about is the scan tomorrow and what happens next.

Hi, I posted on here on a different thread a couple of weeks ago. At our 12 week scan the NT measurement was also 6.6mm, combined with bloods we are at a greater than 1:5 risk for Downs, Edwards and Patau syndrome. We decided to have the NIPT (we had this on the NHS) as there are no risks to the baby. 12 days later and we are still waiting for the results. I really wish we'd just gone with the CVS as that should give a definite result. The waiting is awful. Thinking of you.

SeahorseBlue so sorry to hear that you're going through this as well and that you're still waiting for test results after so long. I hope that you don't have to wait too much longer and that it's a positive outcome. Thinking of you too

This was me during my pregnancy in 2016. I had NIPT done (Iona test) at 13 weeks due to one of my twins having an increased nuchal measurement of 6.1mm. Combined bloods came back with high risk of 1:14 for Down Syndrome and 1:28 for Edward/Pattau Syndrome compared to 1:28,000 for his twin sister. We were obviously very concerned but my NIPT results came back as very low risk, 1:1,000,000. I later had a third trimester amniocentesis for other reasons and it was all clear. He is now 18 weeks old and perfect! Just to give you a story with a positive ending. It sometimes can be just one of those things xx

@MintyVixxxx thank you. It's good to know that things can turn out well in these circumstances.

Further local scan is early afternoon today. I need to try and do something productive work wise in the meantime but I'm struggling to focus!

Thinking of you, just take things five minutes at a time, and don't be hard on yourself about getting on with work, it's a huge issue to be dealing with.

for you OP it is the most indescribable, excruciating form of limbo. I remember it now like it was yesterday fingers crossed for you OP.

MaryThorne, how did your scan go today?

Thanks for all your messages. Sadly there was no heartbeat at the scan so I've had an mmc. It seems it only happened in the last day or so. Booked in for surgery tomorrow morning for surgical management of miscarriage.

I'm so sorry you are going through this, it is heartbreaking. I hope tomorrow goes as smoothly as possible and you can be back home and resting asap. Take care of yourself and give yourself time to grieve and heal.

Really sorry to hear that. Thinking of you.

I'm really sorry Mary, I have recently been through the same thing. I had a 4mm nt at my dating scan and a further scan suggested Edwards or Patau syndrome, but the hb stopped before they could do an amnio. I had my surgery last Thursday.

Be kind to yourself. I felt surprisingly ok for the first couple of days afterwards, but then I think my hormones crashed. I am signed off work for a few weeks though, which I think will help. Hope you have good support.

Thinking of you today

I'm so sorry

@GreedyDuck so sorry to hear you're going through similar

Thanks everyone for your kind messages. I'm physically recovering from the surgery but I think the reality of what's happened is yet to fully hit.

I'm 40 with one wonderful DS. I'd always thought we'd have more than one child but I'm not sure I can go through this again. I know it's not a decision to be made yet but I feel like our ages are a limiting factor.

Maybe take a bit of time?

So painful. Warmest wishes.

Hi marythorne, I am so sorry about what you have been through. I am about to have my second tfmr so know something of how you feel - I have had to wait ten days before I could get a surgical termination, which is finally taking place tomorrow. It's felt like torture at times.

Take time as others have said. 40 is not so old. After my first tfmr I wondered if I could go through it again but my strength and resilience returned surprisingly quickly. It's so hard though. I hope you can be kind to yourself and have plenty of support irl.

Hi happenedagain, so sorry that you're going through this and for the second time. I hope all goes as well as it can do tomorrow.

I do have good support IRL which I am grateful for. I had my first proper cry last night since the ERPC but mostly I feel ok if a little fragile. I know really that 40 isn't that old and there's plenty of time to make a decision as to whether to ttc again.