Edwards syndrome markers

[Starlive22]

I've been told I've got too much amniotic fluid and the baby is measuring a bit large for dates.

I've got another growth scan in 2 weeks.

Afterwards the doctor mentioned Edwards Syndrome as a possible cause (amongst many others) and this has me so worried.

The 20 week scan showed no abnormalities at all, everything seemed perfect...I just stupidly assumed that meant that these types of things would be spotted.

My blood test result didn't mention Edwards or Patau Syndrome just said I was lower risk for Down's syndrome and I left it at that, nobody mentioned anything until now.

Is it possible my baby has this life threatening syndrome and it has gone unnoticed? She looks so perfect from the scan...I feel so panicked. Will know more after the scan on 2nd Jan but feel like I'll panic all over Xmas now because of this.

I just assumed it would have been picked up in an earlier scan?

Everything was less real for my husband, until baby was here. Then it hit him.
Anxiety is horrid. Have you tried any ‘self help’ strategies- mindfulness, meditation, positive visualisation? It’s not normally my style, but something positive to do to get through today, the week, next couple months.
One thing I regret is not telling the professionals how their little comments made me feel. How that one, throw away remark stayed with me through the nights and echoed through everyday.

@Cantchooseaname I know exactly what you mean. I'm sure those people just finished work, went home and watched TV like any normal night. While the people they spoke to went home an anxiety ridden mess. Once something is said it's hard to take back (not that they have tried to take it back) but it can't really be undone with a simple 'but it might be fine' after a lengthy talk of your worst nightmares.

To be honest I did think about self help, positive meditation stuff (it worked for my driving test!!!) but I really just feel too emotional and drained. I'm sure if I dedicated all the time I spent worrying to thinking positive I'd be great, but my mind just doesn't work that way 😔

*Starlive22 was that for full or mosaic? Genuinely curious as I though most on my group found out antenatally for full, I wasn't jist trying to placate your fears

@SleepingStandingUp I'm honestly not sure, I was just scrolling through the posts and a lady was kind enough to put a picture of her beautiful little girl she had lost on there and said the diagnosis after birth was a huge shock and a few comments down another woman said the same thing happened to her. I didn't comment or ask any questions so I would assume it was full T18?

Such brave families and heartbreaking stories on there.

There are

Starlive

The odds of raised fluid in pregnancy is one in a 100, Edwards syndrome occurs in 1 in 5000 live births.

The odds are firmly on your side.
Also remembered reading this thread how the abdominal circumference on 20 week scan of my DD was way above normal, quite a few weeks ahead. Then she was born with a completely normal belly for her size (9.5 lbs). They can't actually measure things precisely on the ultrasound scan, including the fluid - it's protection, partly guesswork.

Thanks @Freshme! Some reassuring statistics there. I managed to speak to my midwife again yesterday and she said possibly the reason they are being so vigilant about this is that next year our NHS will be screening for it, so she said lots of discussions and seminars for Drs, so maybe that's why they have been so insistent. Or maybe there is something that aren't telling me.

My Dr said ultrasounds can't be relied on for T18 or T21 as they don't always have reliable markers.

Test is on Tuesday and they said results can take 2 weeks...waiting is killing me, I don't dare buy anything, it's just taking all our attention at the moment. Just feels very surreal in our house at the moment x

Or maybe there is something that aren't telling me.
They really would tell you, they can be quite opinionated about t18 pregnancies.

Did your early blood tests screen for Edwards and Patau? They already do round here

Sorry, just re-read, projection, not protection!!
Please don't worry, your baby is bigger than average and it goes hand in hand with raised fluid ( and goes against smaller than average Edwards babies, actually the odds of an Edwards baby being larger than average probably are so low that you are very likely wasting your money in terms of Edwards specifically, but I understand it buys you a peace of mind and screens for loads more anyway).

My SIL had all raised markers for Downs' at her 12 week scan + blood(but that was very likely because she was 35, it'd would have raised the odds, it's all calculated by the machines).
Anyway, she was offered amnio and they rejected it because they were planning to keep the baby even if it had Downs' but needless to say her pregnancy was spoiled by worry.
The child is completely and perfectly healthy, he's 11 now. And it wasn't just an off-hand remark, it was a letter saying her chances of Downs' baby were 1 in 6 (if i remember right). That's not exact science at all, I don't believe they were her actual risks, that's how a very imperfect algorithm calculates it. 🙄

My little niece was born with Edward's Syndrome. There were many markers picked up from as early as the 12 week scan. I can't recall them all now but I remember from very wary on it was very clear she would be very poorly if she even managed to survive the birth.

Thanks everyone for the reassurance, again I can't say how much all this has helped me, I seem to get lost in my worries and then reading things like all your comments makes me back up a bit and remember it's not a certainty. I'm so up and down it's like a yo-yo x

Yes as far as I know, she just said she was a midwife when she introduced herself but she seemed very confident on the ultrasound so I assume so x

Only one more day until the test, fingers crossed the results come back soon. Does anyone know what kind of results they give you, like is it yes or no or odds?

Dear Starlive
You have inside you, your most beautiful baby. It is so hard when you feel things are uncertain.
This is the way it seems to me: You will have the test tomorrow, but then still have to wait for the result. Nothing you can do will make the results happen any faster
From what you have read, there is a possibility of something like Edwards, but also a really huge possibility that there is nothing wrong.This has also been backed up by people here relating experiences and the comments of doctors including a consultant obstetrician.
Nothing you can do will change who your darling little one is, and the majority chance is that she is perfectly fine
I'm sure that you will still be worried, but when you feel anxious, could you just have a mantra to keep saying eg " There is a huge chance that everything is fine" and then maybe turn your focus onto something else, like maybe just relating to your little one. Talking or singing to her, telling her that mummy and daddy are here and love her.

@educatingarti that is such a lovely reply, thank you. Really kind words that mean a lot when you feel lost and uncertain. It's hard to keep your head straight I think and not get skewed by all the information available and try to remain logical xx

Was thinking of you this morning, though it was today. No idea in results but the other ladies will xx

Reading all this back I must sound crazy, everyone seems to be telling me not to worry and I'm just so set on worrying. It must just me my nature...and my hormones! All replies are so, so greatly appreciated and they are keeping me going whenever I have a wobble.

Such a great support MN I just never expected so much. It's a huge comfort, I only hope I can pay it back at some point

The Harmony Test results should be presented as odds I.e. 1/10 000.

I'm another one who had a big baby (4.33kg at birth 38w 5d) and extra fluid. I had GD so that was probably why.

The only issue I had was as it was #2 baby stayed transverse/ oblique to the very end and never really got (or at least stayed) head down.

Good luck and I hope the results are good for you.

Thanks @Feelingkenty just hope it's down to a bigger baby amen nothing more x

I'm just so set on worrying he is yours,its natural. And I think it stops approximately never lol x

@SleepingStandingUp 😂😂😂 I just never expected the worry to be so....worrying!!!

One more sleep for the test (do try and sleep!) and a step closer to happy baby news 🙏

I can't believe it's today, I feel sick. It's not until tonight either so I have to go all day at work first.

I don't know what I'll do if the results come back bad. I know I can't actually do anything I just hope they come back fine. It's going to be such a long day 🙁

Fingers (and toes) crossed for you OP. So desperately hoping you get happy news today :-)