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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

HIgh risk of Downs syndrome, Edward and Patau Syndrome

30 replies

tsang1981 · 03/03/2020 15:03

I am 14 weeks pregnant, has anyone else been in the position of a high risk of any of these syndromes?

OP posts:
SarahD19 · 03/03/2020 15:05

Yes - Edward & Pataus in my case. Feel free to PM me if it helps. Also there’s similar threads on antenatal tests section x

Nightmanagerfan · 03/03/2020 15:09

Yes I was one in five risk for downs. Had CVS which confirmed downs and we then terminated. Happy to answer questions. It’s a huge shock; sorry you’re going through this

Robs20 · 03/03/2020 15:12

I was high risk for downs. I had the nipt test which came back low risk. Now waiting to see what happens when baby is born. What risk factor are you/ what was your NT and blood results?

essexanon · 03/03/2020 15:51

yes high risk of downs. I didn't do any further tests as I wouldn't terminate either way, I was worried at the time I found out, im now 18+2 and no longer worried. what will be will be. I wouldn't terminate either way and would love the baby all the same xx

Treaclepie19 · 03/03/2020 15:54

Yeah high risk for an abnormality. We did terminate as he was very unwell and unlikely to survive. It wasn't any of those conditions.

RoLaren · 03/03/2020 16:02

I was deemed high risk - 1 in 80, mostly due to my age (43) I paid for the Harmony test and it came back 1 in 10,000. Healthy baby born. Added bonus to find out the sex at 13 weeks too.

SarahD19 · 03/03/2020 16:40

I may be speaking out of turn here, but am just mindful of some of the comments around it not mattering if there is an issue and loving baby all the same, wait til they’re born etc etc.

I appreciate with some conditions and some individuals, that may be the stance, but prenatal diagnostics and prognosis can really differ.

Having gone through the experience of being told my baby had only a tiny chance of survival (even in terms of lasting the pregnancy) and would likely suffer immeasurably - some of the worst comments I faced during that time were people making comments like the above. It was incredibly painful having to articulate that my baby may not even survive - and if they did, would suffer. That I would’ve only dreamed, at that point, of my pregnancy going to term and getting to meet them.

I know a lot of people try to be supportive and simply don’t necessarily understand the varying prognosis is most instances, but it can be very painful, not only feeling judged, but also having to explain when you are already going through something so traumatic. Hence I would urge sensitivity wherever possible.

Additionally, some conditions and diagnoses can actually place a mother’s life at risk - and a decision sometimes is made as both the mother and baby would likely die in continuing the pregnancy. I’ve known people face this.

I appreciate many of these comments are meant to be supportive. Some people may think I’m going ott, but just thought it was worth highlighting.

Treaclepie19 · 03/03/2020 18:02

Yes, thank you @SarahD19. I wanted to say the same.
Believe me, I loved and love my baby. My "choice" wasn't easy and wasn't what I wanted. It's not as simple as loving them regardless.

SarahD19 · 03/03/2020 18:25

@Treaclepie19 So much love to you 💔💔

Elouera · 03/03/2020 18:28

Yes, my 1st pregnancy has patau syndrome which was found via NIPT. Feel free to private message me or ask any questions. Remember that you aren't alone and its not your fault. x

Huggybear16 · 03/03/2020 18:32

Couldn't agree more with @SarahD19

Are you having more tests OP?

PrayingandHoping · 03/03/2020 18:35

I had a low risk 12 week test and then A high risk NIPT for downs/t21. We continued with pregnancy with no amnio as baby had no issues on scan.

She is now a smiley joyful 4 month old. It's been a rollercoaster

It is v different scenario for those who are given life limiting prognosis. My heart goes out to you

To the poster above who is in the same position as I was please feel free to pm if I can help

Treaclepie19 · 03/03/2020 18:35

And to you @SarahD19

Merryhobnobs · 03/03/2020 18:36

Yes we came back as high risk last year. The placenta was in wrong place for amniocentis or the other test so we did the NIPT (or harmony) test at a private ultrasound clinic. It was a hugely stressful time but our test results came back all well. I had previously lost a baby at 14.5 weeks so the whole pregnancy and these tests caused a lot of anxiety. Our beautiful boy is now 6 months old, very well and a joy. It's a horrible time and I hope you go for the NIPT and all comes back well for you.

Neonrain · 03/03/2020 18:38

I'm curious to know what everyone would do if their baby was born healthy, then acquired a disability?

georgialondon · 03/03/2020 18:45

Why @Neonrain? It's not the same thing is it.

Treaclepie19 · 03/03/2020 18:47

@Neonrain I'm not sure the point in your question. Are you hoping one of us would say gosh, I hadn't thought of that?
If my baby was born healthy and then acquired a disability of course I would support them and look after them.
If I know in advance my child is going to die soon after birth, suffer to extremes or need multiple hospital admissions just to keep them alive. Then yes, I would (and have) have a TFMR.

datasgingercatspot · 03/03/2020 18:53

I'm curious to know what everyone would do if their baby was born healthy, then acquired a disability?

No, you're not, it's just a pathetic attempt at a veiled dig at those who elect to have as much prenatal screening as possible and then exercise their right to discontinue the pregnancy if they see fit.

bearfood · 03/03/2020 18:57

Yes, 1 in 14 risk of Edwards syndrome, which felt very high indeed. Had the Harmony test (on NHS) and all was well. Try to take each day as it comes, I know how scared you are feeling.

peachgreen · 03/03/2020 19:45

@neonrain this is someone's real life you're trying to score political points from. Take your guilt tripping bullshit elsewhere.

@tsang1981 so sorry you're facing this OP. I hope further tests bring clarity and you're getting lots of love and support IRL.

tsang1981 · 03/03/2020 20:29

I'm new to this chat, how do I pm you?

OP posts:
SarahD19 · 03/03/2020 20:31

Dotted line on bottom right hand side of messages allows you to PM x

tsang1981 · 03/03/2020 20:45

Huggybear16

I am thinking to do the nipt and see how that is, we're also thinking to go for second opinion with a private hospital, I read a story of a young couple who was told they had high risk of downs, they didn't have any tests done as they weren't going to terminate anyway and the baby was born fine.

OP posts:
Strawberrycreamsundae · 03/03/2020 20:45

I'm curious to know what everyone would do if their baby was born healthy, then acquired a disability?
Sly dig? How dare you try to guilt trip pp.
I only wish that these diagnostic tests had been available 39 years ago when I eventually miscarried a much wanted baby with multiple undisclosed conditions (because the experts deemed it Wasn’t necessary for you to know’.
Fingers crossed for you OP💐

PrayingandHoping · 03/03/2020 20:54

@tsang1981 a high risk is just that... a risk. It isn't a diagnosis and it does mean there's a chance the baby could be born and not have the condition

If it is Downs you have been given a high risk for please feel free to pm me if I can be any way helpful having been through it

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