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Original poster

High risk Edwards/Patau

57 replies

NSx · 11/05/2022 18:29

Hi all,
I’m extremely worried as I received a call from my midwife today to say I was low risk for DS, but high risk for the other two <Edwards&Patau - 1 in 32.

when I asked what put me into high risk, she said it was my bloods(hormone levels), my Papp-a & HCG levels were off. Low and high I think.

I asked if anything was seen at my latest scan (13wks) and she said everything was normal NT was 1.8mm and all the babies measurements were normal.

I’m 34 years old with my first pregnancy. I’ve opted to do an amnio test next Friday (15+1) as she said NIPT is more accurate for DS rather than T13&18.

has anyone been in a similar situation? I’m freaking out and haven’t stopped crying.

x

OP posts:
Missingmydarling · 19/05/2022 17:31

*bit

Original poster
NSx · 19/05/2022 17:58

I didn’t know but I kind of assumed to do so because of the scanning. My last scan was fine, but I’m petrified Incase anything has changed… anyways I will know tomorrow.
thanks so much for keeping me in your thoughts. I’ll be in touch when I know more x x

OP posts:
Missingmydarling · 19/05/2022 18:21

Yes let us know. And don't take aspirin tonight.

Original poster
NSx · 20/05/2022 15:57

Hi,
I went for my amnio and managed to get that but I’m not hopeful for a positive outcome.
The specialist really struggled to scan me which has been happening at every scan. I had to be scanned twice as she wasn’t able to see what she wanted.
She said she couldn’t say for certain as the baby wouldn’t get into a great position to scan, but she isn’t sure if she sees a little bit more fluid in the brain than should be there.
She also noted that the head shape was just a bit more round than she would hope. She said normally they are the shape of a rugby ball, but mine is a bit more round.
she wasn’t able to give me any more insights as the baby was making life extremely hard.
I should receive my amnio results on Wednesday and she also sent away for a full array which I will receive in 2 weeks. But again, I’m expecting the worst.
x

OP posts:
Missingmydarling · 20/05/2022 17:31

The rapid result will give you a good indication. I'm glad they could perform the amnio. Sorry the scan wasn't that informative. Rest up this weekend. Thining of you. Hope its good news Wednesday.

Original poster
NSx · 25/05/2022 10:48

Hi,
Just wanted to update.
it’s bad news. The baby has full patau’s …
my baby girl has patau’s
im heartbroken

OP posts:
Beachsidesunset · 25/05/2022 12:10

I'm so sorry, I hope you're getting plenty of real-life support Flowers

Missingmydarling · 25/05/2022 16:55

Oh I'm so so sorry. I know full well there's nothing I can say to make this better. Please know this is nothing you did. From the moment of conception sadly this wasn't going to work out. My heart goes out to you. Pm me any time if you did want to ask anything xxxxx

sunshine298 · 25/05/2022 18:26

So sorry @NSx Sad

I had been following in hopes of good news for you

Original poster
NSx · 25/05/2022 19:39

Thanks so much for all your kind words, this forum has really helped me see some clarity through my heartache.
I’ve spent most of my day crying my eyes out. I feel so robbed of my baby girl but I know the logic behind it is that she was never going to make it as like mentioned above, it’s been written since the day she was conceived sadly. It’s just harder when I’ve had 16 weeks of loving her :-(
my midwife at fetal medicine has been great and I’m lucky that I’ll be going in tomorrow to get my first pill to TFMR and then check into hospital on Saturday, atleast this part of it happening fast so I can try and deal with my grief and move on.
X

OP posts:
Kitkat247 · 25/05/2022 22:35

Hi NSx
I'm so sorry you got this diagnosis and have to go through this heartache. I lost my little girl 10 weeks ago at 26 weeks following a diagnosis of interupted arch and digeorge syndrome and I'm so sorry you find yourself joining this awful group of women.
ARC are a really wonderful charity who have a helpline and can listen to whatever you need to say and answer questions for you, they also have a forum for after TFMR and I've found it helpful to connect with others who have had this loss.
I found the short time between the final diagnosis and birth (Tuesday-Saturday) passed me in a bit of a blur. I shut down and felt almost numb. In the hospital when I had my daughter with me I felt oddly euphoric, she was so perfect and she was mine and I loved every inch of her. Then when I came home I plummeted, I felt so dreadful in the run up to her funeral, like I was drowning. The reason I say that is because of that happens then hold onto the fact that those days pass, it might not feel like it at that moment but you will come through this.
Look after yourself and please PM me if you feel you'd like to talk.

Ganymedemoon · 27/05/2022 12:11

I'm so so sorry you are going through this. I lost my little girl to Edwards 5 years ago now.

Lots of gentle hugs xxx

Original poster
NSx · 27/05/2022 20:22

Thanks for the kind words.
im terrified of going into hospital in the morning and utterly devestated …. X

OP posts:
fishingpaintings · 27/05/2022 20:26

I'm so sorry for what you're going through. Flowers

Ganymedemoon · 27/05/2022 22:22

NSx · 27/05/2022 20:22

Thanks for the kind words.
im terrified of going into hospital in the morning and utterly devestated …. X

It's really not easy and it is totally devastating. By far the hardest thing I have gone through.

One day at a time. Lots of love xx

Original poster
NSx · 29/05/2022 08:22

Thanks for the messages. 💖
my baby girl is absolutely beautiful and perfect, just leaving the hospital now and trying to navigate life without her 💔 xx

OP posts:
Missingmydarling · 29/05/2022 09:51

Well done. You did the best thing for your darling. Rest up xxxxxxxxxx

Original poster
NSx · 29/05/2022 13:17

I know this much is true, but the pain still hurts my heart 🥺🤍 x

OP posts:
motogirl · 29/05/2022 13:25

Nothing can take away the pain, just remember you are not alone, at 3am you'll find someone here to talk to if you want it. Many of us have been through similar situations, it does get easier - 20 years for me

TaVeryMuchLove · 29/05/2022 19:58

I’m so sorry for what you have been through. Sending you love xxx

Kitkat247 · 29/05/2022 20:05

It's such a difficult time just now, the worst you can possibly feel. But it will get easier, you will find a way to navigate life.

Original poster
NSx · 02/06/2022 11:58

Thank you for your kind words 🤍
they mean a lot, thanks for the support xx

OP posts:
Kitkat247 · 09/06/2022 19:47

Hi @NSx I just wanted to send a message to see how you are. Sounds like a stupid question I know.

Original poster
NSx · 09/06/2022 20:12

I’m ok, taking each day at a time trying to get through it all. It’s hard, but it means a lot that you asked after me, thank u xx

OP posts:
yourestandingonmyneck · 09/06/2022 23:08

@NSx, glad to hear you are doing ok, or as well as can be expected.

Thinking of you XxX Flowers