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Original poster

Edwards syndrome markers

338 replies

Starlive22 · 20/12/2017 11:14

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?

OP posts:
Lukeandlorelai4Ever · 01/01/2018 23:31

Good luck tomorrow Flowers

Original poster
Starlive22 · 02/01/2018 00:10

Thanks so much everyone for the kind words and well wishes. Feel absolutely sick with worry, and feel I won't be getting much sleep tonight but at least it's the scan tomorrow. Has been such a long two weeks I thought it might never come.

OP posts:
Chimchar · 02/01/2018 00:35

Wishing you all the best for your scan.
I consistently measured big for dates with my dd, and ended up giving birth to a perfect 10lber.
Easier said than done, but try and get some rest tonight. X

BrutusMcDogface · 02/01/2018 06:56

Good luck, starlive. Thinking of you Flowers

Prusik · 02/01/2018 09:33

Thinking of you for your scan today Flowers

Original poster
Starlive22 · 02/01/2018 10:27

@SleepingStandingUp would you mind if I asked if they picked up any markers for Trisomy 13 on any ultrasound?

Scan in an hour, feel sick! Not even sure how much I will find out today but thanks so much for the support ladies, it really really does mean a lot xx

OP posts:
SleepingStandingUp · 02/01/2018 10:34

We had no soft markers at all and even when he was born he doesn't "look" like he has wonky chromosomes. His issues are very mild as mosaic isn't the same as having full T18 / Edwards. He has a few little wonky bits and a slight delay they expect him to catch up. However i'm on the facebook support group for t18 and t13 and none of the babies were large/ all had markers picked up antenatally. Mosaic _ what my son has - is really rare .
Good luck star. Really think the doc has given you a hard Christmas for no reason and it's not Edwards xx

Youcanstayundermyumbrella · 02/01/2018 12:05

I've just read this whole thread and am feeling very cross indeed with the thoughtless doctor who caused you such worry to be honest.

I hope the scan is going well now and you are getting good news. Fingers crossed.

Prusik · 02/01/2018 15:00

Hope you're ok op. I've been thinking about you today. My dh told his work today that if my growth scan doesn't go well he'll be taking some time off work

BrutusMcDogface · 02/01/2018 15:06

Really hope you're ok 💐

Original poster
Starlive22 · 02/01/2018 16:46

Hi everyone

Well we had the scan, the fluid is still high but the baby's growth seems to be on the same track, still high but following the same trend so they didn't seem to bothered about that part.

The midwife who did the scan said my diabetes test has come back fine and that the baby looked fine on scan other than the fluid being a bit high.

She still seems to think I should have the amniocentesis but it seems there are risks with that and if everything showed up fine on the scan then the fluid is the only thing pointing her towards this Edwards Syndrome.

I said I would talk to her again in 4 weeks when I go back for mg next growth scan.

The max vert pocket is 9.5...I have no idea what that means but thought someone else might know.

Still in the same position really, not sure what to do 😥

OP posts:
5BlueHydrangea · 02/01/2018 17:11

I had excess fluid with dd2. No other problems although I was tested for gestational diabetes as she was big (as am I) but it was fine. In the end she was 2 weeks late and 10lb3oz but healthy. I had a csection and heard someone say 'gosh, that's a lot of fluid' - that was one of the reasons for the c section as there were some concerns she may have problems, or shoulder dystocia because of her size (which they estimated up to 12lb so not very accurate really). Fingers crossed for you but sounds to me that the odds are pretty low anything major is occurring.

SleepingStandingUp · 02/01/2018 17:47

It seems like everything is fine except excess fluid. It night be 1 indicator towards Edwards but you have no other signs and baby looks healthy. Excess fluid can be an indicator of plenty of things and it can be an indicator of just excess fluid.
Is it worth the risk of an amnio to test for something that seems really counter indicative to your scan? And would you opt for a late term abortion in the unlikely event it was positive? Im not suggesting you answer by the way but I wouldn't risk an amnio unless you would choose to do something different with your pregnancy

There's a facebook support group for trisomy 18 and 13 if you wanted to join for some experience of other peoples pregnancies but it seems really unlikely baby would show no other signs xxx

BrutusMcDogface · 02/01/2018 17:54

A quick google shows that a "max vert pocket" of bigger than 8 can signify polyhydramnious (sp) but in some countries it's 10. Hopefully you have no need to worry 💐

Original poster
Starlive22 · 02/01/2018 18:27

@SleepingStandingUp no, I completely agree with you, I'm shocked they would suggest such an invasive procedure at this stage with only one marker, and again no I think at this late stage it's in for a penny in for a pound with me. I think half of me thinks 'well too much fluid could mean anything' and the other half thinks 'I'm not a medical professional...should I just trust them?'

I have had losses previous to this pregnancy which were never explained so I think that's the thing making her suspicious of chromosome problems. Still, these were all first trimester losses, but still.

At least I didn't agree to it today. I still feel in the back of my mind that the scans would have shown something, but I don't work in medicine what right to I have to second guess a doctor?

OP posts:
Original poster
Starlive22 · 02/01/2018 18:29

@BrutusMcDogface thanks! I managed to look into it a little and it seems mild anyway at this stage so at least that's something!

Thanks everyone once again, such overwhelming kindness here on MN and it's just comforting to know people care when you are feeling a little low

OP posts:
Youcanstayundermyumbrella · 02/01/2018 18:30

Starlive, did you say this scan was done by a midwife? I massively admire midwives but for your sake if nothing else you need to be scanned by a specialist. Will you be seeing one at all? Can you ask for a referral?

Youcanstayundermyumbrella · 02/01/2018 18:33

And when I say for your sake, I mean because I think you need expert reassurance, not because I think there's a problem based on what you've said.

Original poster
Starlive22 · 02/01/2018 18:43

@Youcanstayundermyumbrella it's the specialist suggesting the amnio, I made sure to ask today what has made her suggest it she said, just the high fluid and the previous m/c and my age (33) ... it's odd because the other doctor I spoke to never mentioned it and the midwife doing the scan looked a bit confused when I mentioned it. My hospital is quite small (and old fashioned!) I'm not sure I could ask to move specialist as I'm not even sure there is more than one!

OP posts:
SleepingStandingUp · 02/01/2018 19:33

but I don't work in medicine what right to I have to second guess a doctor? they aren't all knowing and there is significant pressure on people with a positive diagnosis to terminate, even late on.

Have every scan going to keep an eye on your little one ( missed if you know the gender) but if you wouldn't change anything, then it's not worth the risk.

Youcanstayundermyumbrella · 02/01/2018 19:35

Got confused with all your shes! They sound a bit out of it if they just had a midwife scanning you if they have any concerns at all. A bit depressing how different the various areas are. If you think you're going to worry a lot, I'd ask for a referral to a foetal medicine specialist - anyone can ask for one although it sounds like you'll have to go to a different hospital.

SleepingStandingUp · 02/01/2018 19:45

Where in the country are you Star?

iggleypiggly · 02/01/2018 20:06

I had no idea midwives did scans? It should be a fully trained sonographer. Where are you in the country? I think you need a referral to put your mid at rest. I’ve never heard of a midwife doing a scan Flowers

Original poster
Starlive22 · 02/01/2018 20:15

@SleepingStandingUp I'm at County hospital in Wales xx

OP posts:
Original poster
Starlive22 · 02/01/2018 20:19

The more I read the more it seems that there should be some obvious anomalies if it was Edwards Syndrome.

It was a sonogropher who did my 20 week scan but a midwife who did the one today.

Not my community midwife from my GP but a midwife from the hospital if that makes sense

OP posts:
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