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Edward's syndrome

(21 Posts)
Rhondi88 Fri 26-Aug-16 06:51:57

I recently had screening tests with my 2nd baby and they've come back that my baby has a 1.25% chance of having edwards syndrome. I initially decided to have the cvs procedure. Now I'm not so sure.
My little boy's six and he was believed to have a 1 in 24 chance of downs. After having the amnio they lost my results for 2 weeks. I finally discovered he was ok.
I have also been advised I have low protein in my placenta and will need additional scans through my pregnancy.I don't know what to do. The cvs miscarriage rate is 1%, the edwards rate is 1.25%. What if I have the procedure and lose a perfectly healthy baby? Edwards could show up on scans so unsure which way to go. The midwives seem very keen to push cvs and I keep changing my mind. Any advice?

Duckyneedsaclean Fri 26-Aug-16 06:58:58

I had a similar situation in my second pregnancy, and decided the risk of miscarriage was too high (he's 3 now). Don't worry about what the midwives say - it's up to you.

LondonRoo Fri 26-Aug-16 08:13:15

Hang on to the chances of baby not having Edwards as being 98.75%!

Is having a harmony test privately an option for you?

What a horrible scare to have and I hope in the end all is well with your baby.

It's your choice so do what you are most comfortable with.

Roo

Rhondi88 Fri 26-Aug-16 08:23:06

I think the options are cvs or amnio. Both carry same 1% risk. My guts telling me it's fine and not to put baby at risk, whereas everyone else, husband included wants me to have procedure done.

LondonRoo Fri 26-Aug-16 09:01:23

The Harmony test is only available privately and is considerably more accurate than the NHS screening. It is just a blood test (so no risk to baby) and it could potentially rule out Edwards syndrome and end the worry for you.

Difficult decisions - I don't envy you at all.

Roo

Trifleorbust Fri 26-Aug-16 12:45:58

Could you cope with not knowing all through the pregnancy? Would scans Edwards?

Sorry to hear this, it's a very difficult decision.

PotteringAlong Fri 26-Aug-16 12:48:04

You could ask what the miscarriage rate is for your surgeon? It might be much lower than 1%?

LuckySantangelo1 Fri 26-Aug-16 12:51:51

Read up properly on CVS, the rate is much lower. It's actually about 1 in 300. I've had two CVS tests so looked into it quite in depth. Good luck op.

KittyandTeal Fri 26-Aug-16 16:12:37

The % quoted by the nhs is very outdated from an old study. Most consultants who perform cvs or amnios haven't lost a healthy baby.

It might be worth looking into a harmony test before an invasive procedure if you're not comfortable.

How far along are you? We found out at 22 weeks that dd2 had edwards after soft markers were found in her anomoly scan. I also had off combined hormone results and she was smaller than 5th centile for size so we already knew something wasn't quite right.

Sorry you're having such a worrying time.

Arc may be able to give you more advice on the MC rates and other testing options.

TheDisillusionedAnarchist Fri 26-Aug-16 16:31:05

I'm sorry to hear that though 1.25% is a very low chance. My first daughter had Edwards, she died in January aged 3 months. We have a blog for her at www.rumersrainbow.co.uk which has a lot of the Edwards research on it, including ultrasound soft markers.

What would you do if your baby does have Edwards? Almost universally babies with T18 have growth restriction apparent very early on and usually other anomalies (the majority are detected at the 20 week scan) so it is likely that if no other issues revealed themselves your baby does not have it.

However if other issues reveal themselves would you want invasive testing? Amnio is lower risk and more accurate than CVS. If you would terminate in the event of an edwards diagnosis then I imagine you would want further testing. Equally it is worth knowing that if your baby is diagnosed with Edwards then they will routinely be denied basic care including full resuscitation after birth, having a firm diagnosis also gives time to arrange for the kind of care you want whether that is full on intensive or palliative care.

Sorry you have to make these difficult decisions. I think others have said ARC are really helpful in talking through options. I hope things go well for you.

Rhondi88 Sat 27-Aug-16 10:24:50

Thanks for all your replies. After lots of changing my mind I've decided to go ahead with the cvs procedure on Wednesday. I've got a six year old little boy and I wouldn't want to put him through the pain of a late miscarriage or a brother/sister who dies.

LondonRoo Sat 27-Aug-16 11:22:24

I hope it goes well and you get good news from the cvs. Statistically, that is by far the most likely outcome.

Roo

imjessie Sat 27-Aug-16 17:15:32

Later scans will likely show Edwards , it's usually fairly obvious as the babies don't live much beyond birth as a rule . I had a cvs with my son and they are usually fine. I think te babies that die would have died anyway . The consultant who did mine said as long as the baby is moving afterwards you are likely to be ok ( they scan you to see if it's still moving ) I think the 1% risk comes from human error from my experience .

sleepyMe12 Sat 27-Aug-16 17:20:20

I had cvs after soft markers for Edwards showed up at my scan At 22 weeks. This was before the harmony test was available.
The consultant said that she had never lost a healthy baby and as someone else pointed out the NHS statistics are quite out dated.
Thinking of you all flowers

Jaq2014 Thu 20-Oct-16 10:02:01

Just had 12 week scan, first baby. Everything looked good on the scan, no abnormalities showing (and trust me they looked A LOT! Was there for 6 hours had three internals and three tummy scans - baby was stubborn and refused to move into needed position!)

But had bloods back and am considered low risk for downs (1:2717) but high for Edwards/Patau (1:34). 😔

Having Harmony test done tomorrow but, am I wrong to cling onto the fact that nothing showed on the scans??

LondonRoo Thu 20-Oct-16 10:29:46

There's a 97% probability your baby doesn't have Edwards... So imho, yes! Hope it turns out well for you and the blood results will just be a horrible scare that you can soon put behind you.

Roo

Jaq2014 Thu 20-Oct-16 10:41:16

Thanks Roo, really appreciate the reply. Pregnancy is an obstacle course of worries, fears and anxiety!

Rhondi88 Thu 20-Oct-16 10:41:51

I didn't go through with my amnio and had 3 scans which reduced my probability. It's so scary. Hope it goes well

Jaq2014 Thu 20-Oct-16 11:52:00

Thank you 💕

LondonRoo Thu 20-Oct-16 12:16:12

When I said, 'Imho yes" - I Mean - imho, yes, cling on to the fact nothing showed on the scans.

Rhondi - hope all goes well for you and that all the scans are reassuring - lots of baby viewing time!!!

Rhondi88 Thu 20-Oct-16 13:41:38

I've got a friend who's a midwife and she advised that edwards has so many markers there's very few babies who don't show up on scan so I feel ok about it.
Baby boy due in Feb!

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