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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:
yawnyawnyawnyawn · 13/01/2018 13:53

If you have high odds from your 12 week scan and bloods then is a possibility . You can ask for an amino to be sure but be aware it doesn't show up all genetic conditions .
I'm not sure why a doctor would even mention it ?
Edwards normally has quite visible markers that can be seen on the scan . Maybe you could ask for another scan with a different sonographer or a consultant at a feral medicine centre ?

Original poster
Starlive22 · 13/01/2018 14:07

@yawnyawnyawnyawn hi thanks for your post. Where I live (Wales) they don't do testing at 12 weeks for Edwards Syndrome only Down Syndrome unless you are 35 (I was 33 at the time). I couldn't have the fluid measured at the back of the neck at 12 weeks as the baby was in the wrong position.

I'm 30 weeks now, all ultrasounds have been fine and have shown no problems apart from polyhydramnios. Dr wants to do an amnio based on the polyhydramnios and my history of miscarriage but I wanted to try the Harmony test first as the ultrasounds have been ok.

They seems to be very reluctant to refer me to another hospital as mine is a bit out in the sticks and old fashioned. Just hoping the Harmony plus the clear scans will give me some peace of mind and the polyhydramnios is caused by something else (not GD I have been tested for that) x

OP posts:
SleepingStandingUp · 13/01/2018 14:11

Try and get out and do something Star, a walk to feed the geese, a trip to the pun (for lemonade) with all the Sunday papers. Every hour you fill is one closer to the answer, every empty hour is like 3 xx

Original poster
Starlive22 · 13/01/2018 14:15

@SleepingStandingUp totally totally agree with you!! Have got a cold at the moment be have planned to go out and have something to eat with one of my friends. Don't really feel like it but I know that if I go it will distract me and I'm sure I'll feel better after. Just have to distract myself somehow xx

OP posts:
yawnyawnyawnyawn · 13/01/2018 14:17

@30 weeks I would only have an amino if you would abort if there was an issue to be honest . Have the doctors told you what else it could be causing it? In my experience ( I have a son with a genetic condition) you have to push them for information.

Original poster
Starlive22 · 13/01/2018 15:40

@yawnyawnyawnyawn no no that's why I paid for the Harmony, I'm too late to do anything now anyway, I just want to prepare myself if there is a problem.

The only things are polyhydramnios and my history of early miscarriage (no successful pregnancies until this one) so they are the reasons they want to rule it out. I asked if there was anything else and they said no. The polyhydramnios is still mild so didn't want to risk an amnio as I know they have risks.

The Dr said I should have been screened earlier but it got missed. Still, the ultrasounds have been fine so I'm hoping it's my Dr being over the top

OP posts:
SleepingStandingUp · 13/01/2018 15:42

You need some cocktails!!

Virgins obviously

Original poster
Starlive22 · 14/01/2018 15:19

Another day down...slowest wait ever!

OP posts:
yawnyawnyawnyawn · 14/01/2018 15:22

The waiting is awful , I had to wait for about 2 weeks from booking to results . It was awful 😔

SleepingStandingUp · 14/01/2018 18:26

Did you have a nice lunch woth your friend Star?

Original poster
Starlive22 · 14/01/2018 22:16

Lovely meal but have come down with a horrible cold 🤒

Totally agree, want to be positive as everyone around me is telling me it's rare and that polyhydramnios is a poor marker but I think the waiting by itself is just making it seem more likely. I keep talking myself down then getting myself all upset and wound up. Hope it's not long.

OP posts:
SleepingStandingUp · 14/01/2018 23:19

Probably all the stress got you run down and there's so little ypu can take being pregnant. You'll sleep solid for two days after the result!!!

Original poster
Starlive22 · 15/01/2018 08:07

@SleepingStandingUp oh I hope so. If the result is good I can finally relax and look forward to everything, at the moment it feels like I'm in limbo, because I'm so big everyone keeps asking when I'm due and if I've got everything. I don't like to admit I'm too scared to buy so much as a dummy in case there is something wrong with her.

Here's hoping I get them this week and it's nearer the 1 week than 2 xx

OP posts:
SleepingStandingUp · 15/01/2018 08:15

Fingers crossed someone is pulling pulling off those results right now with a huge smile and stuffing them in an envelope x

thisismadness77 · 15/01/2018 11:22

I think the longer that goes by since the test the more positive the news? I really hope so, I always think they are on the phone sharpish otherwise. Thinking of you.

KTD27 · 15/01/2018 11:39

I’m sure you’ll hear soon!

Original poster
Starlive22 · 15/01/2018 12:35

Oh I hope so, I hadn't thought of it like that, maybe they would get in touch straight away if there was a problem. I'm thinking my blood must definitely be there by now.

Just have to try to stay busy and stay positive. Just don't want to tempt fate by thinking too positive either. I need to just be asleep until the results come back!

OP posts:
Original poster
Starlive22 · 15/01/2018 19:25

Having such a down day today. Came home from work early as I've got a horrible cold and stupidly googled 'Edwards Syndrome no markers' and now I've spent the evening in tears.

Maybe it's because I know I might get the results in the next few days it's mad me feel extra anxiety. I feel terrible like I'm a horrible person for thinking the worst.

It seems so shocking the amount of people who didn't find out until late on, although I do realise that by specifically searching for it I'm bound to find it, I'm essentially seeking out my worst nightmare.

OP posts:
Original poster
Starlive22 · 15/01/2018 19:26

Having such a down day today. Came home from work early as I've got a horrible cold and stupidly googled 'Edwards Syndrome no markers' and now I've spent the evening in tears.

Maybe it's because I know I might get the results in the next few days it's mad me feel extra anxiety. I feel terrible like I'm a horrible person for thinking the worst.

It seems so shocking the amount of people who didn't find out until late on, although I do realise that by specifically searching for it I'm bound to find it, I'm essentially seeking out my worst nightmare.

OP posts:
Original poster
Starlive22 · 15/01/2018 19:26

Having such a down day today. Came home from work early as I've got a horrible cold and stupidly googled 'Edwards Syndrome no markers' and now I've spent the evening in tears.

Maybe it's because I know I might get the results in the next few days it's mad me feel extra anxiety. I feel terrible like I'm a horrible person for thinking the worst.

It seems so shocking the amount of people who didn't find out until late on, although I do realise that by specifically searching for it I'm bound to find it, I'm essentially seeking out my worst nightmare.

OP posts:
Original poster
Starlive22 · 15/01/2018 19:28

Having such a down day today. Came home from work early as I've got a horrible cold and stupidly googled 'Edwards Syndrome no markers' and now I've spent the evening crying.

I feel terrible like I'm a horrible person for thinking the worst.

It seems so shocking the amount of people who didn't find out until late on, although I do realise that by specifically searching for it I'm bound to find it, I'm essentially seeking out my worst nightmare.

OP posts:
Original poster
Starlive22 · 15/01/2018 19:29

Having such a down day today. Came home from work early as I've got a horrible cold and stupidly googled 'Edwards Syndrome no markers' and now I've spent the evening crying.

I feel terrible like I'm a horrible person for thinking the worst.

It seems so shocking the amount of people who didn't find out until late on, although I do realise that by specifically searching for it I'm bound to find it, I'm essentially seeking out my worst nightmare.

OP posts:
Original poster
Starlive22 · 15/01/2018 19:30

Wow that posted the same thing 5 times!!! I'm not sure why that happened sorry 😐

OP posts:
MynewnameisKy · 15/01/2018 20:04

Starlive I am so sorry you have been so down today. You need to try not to google. I really hope you get good news soon. Thanks

TractorTedTed · 15/01/2018 20:46

Oh bless you. Step away from google. As you've said, it's just self-fulfilling really. You're only going to find people in the same position. All the hundreds of people who then discovered their baby did not have Edwards are never going to post! So you're only getting the negative experiences, when there are loads of positive ones out there too.

Really hoping you hear soon.

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