Our Edwards' Story

[Missingmydarling]

I’ve name changed for this so it isn’t linked to my other posts.

I’m writing her about my Edward’s diagnosis and termination in the hopes it might help someone in some way. I’ve broken it down into different sections as different bits may be useful to different people at different stages. If anyone wants to ask me any questions I’m happy to answer and I’m sending anyone in a similar situation so much love.

Wow what an amazing and brave story. I don't know what else to say, you have my admiration.

@Missingmydarling thank you so much for sharing, and I'm so sorry for your loss.

I'm waiting for an amnio to confirm the screening results (1:2 for Edwards) and NIPT higher chance result. Having spotted three soft markers on the scan at 17 weeks I'm not feeling particularly optimistic given the odds (but there is hope), and reading posts like yours helps me feel more prepared for what seems likely to be coming.

@HFH40

Just wanted to say I hope your worst fears don't become reality but there's support out there if you do need it. Take care, thinking of you

Thank you for writing. I'm so sorry for your loss.

@HFH40 oh I am thinking of you. Do you have much longer left to wait? I'm really sorry you're going through such a thing xxxxxx

OP thank you for sharing your Edwards story and I am so so glad you managed to have another baby. I wish I had seen your post before our TFMR for Edwards in October. We found out at the 12 week scan that the NT was 8mm, and then got a high risk NIPT for Edwards.

@Missingmydarling my amnio is booked for Thursday, so we should should get the rapid results back on or around boxing day. I've done yet more reading and given the NIPT result, my age (40), the extremely low hormones levels initially at the 12 week screening, plus the three soft markers they found at our 16 week scan when they first tried to do the amnio (they couldn't as the membranes weren't fused) it's looking less promising.
Posts like yours, and @MrsScotland and others I've read, have all been so helpful in getting my head around what's happening, and what seems likely to follow. Thanks to all that share their stories.xx

@HFH40 just came back to catch up and realised your results are due soon. How are you getting on?

Thanks for checking in. They couldn’t do the amnio again because the membranes still hadn’t fused which was frustrating but we’ve been back in again for Thursday. They did get a better view of baby’s heart this time and remarked that it didn’t appear to be developing evenly, so that’s a fourth soft marker. Feels very much like we’re waiting for confirmation rather than holding on to any really hope.
I almost wish there was more definitive signs on the scan so I could be more a peace with the decision I think we’re going to make.

Just as an update, we had the result back the amnio yesterday and it's been confirmed as Edwards.
Having spoken to a few friends over the festive break who have experience dealing with Edwards in a medical setting we'd come to terms with having a trmr as the lesser of two evils, so that's what I'm facing now. Speaking with my children about it all is the worst experience and always sets me off crying.

So so sorry to hear this @HFH40, as you know, that's how we felt too. I am sorry you've had this hanging over you over the holidays too.

I have found the ARC private forum quite helpful, if you'd like some more support x

Thanks @MrsScotland , I've emailed ARC to join the forum.

@HFH40 I'm so sorry to hear the worst was confirmed for you. Thinking of you xxxxxx

@Missingmydarling @HFH40 , I am currently in the same boat as you were some time ago and goodness, one can only truly appreciate it if they are going through it themselves. I hope I am the last person to speak of such a horrific experience and all pregnancies going forward are only loaded with positive emotions.
1:14 chance for Edwards/Patau, low PAPP-A, maternal age 37, baby looked perfectly normal in 12 weeks scan - NT normal.
CVS last week, rapid results confirmed Edwards. Scan pre-procedure found zero abnormalities, full results haven't come through yet, sonographer suspects the baby is a boy.
I had scheduled termination for Wednesday, however very much struggling with the fact that baby looked so perfect and the results weren't, so I cancelled it. I asked for amnio instead, not that I keep much hope for a different outcome, but I wouldn't forgive myself if I didn't do anything in my power to give little peanut a chance.

I hope you are both well and recovering, sending all my love xx

@AA0344 I’m so sorry you’re having to go through this too. I don’t blame you for wanting to get the amnio to be doubly sure, it’s hard when they look so perfect on the scan not to hold out some hope, and the results of the amnio will give you some peace of mind which ever way the turn out.
Keep us updated with the results, I’ll be wishing for the best x

@AA0344 ah that sounds very familiar, I am so sorry. Its so all consuming. I hope you find some mental respite xxxx

I am another story with a sad ending. TFMR is scheduled for tomorrow. Last we saw him was before the amnio and he still looked well - no signs of of the syndrome apart from a suspected hole in the heart. Our little boy will never be forgotten.
Sending you both much love xx

@AA0344 I have been thinking of you. This seems to have been going on for a long time for you. You deserve closure. Sending love xxxx

@AA0344 so sorry to hear that. I hope it all went as well as it can do today. Sending so much love xx

Sending love to your family and to others going through this right now.

Thank you OP for sharing your story

Thank you so much for sharing this @Missingmydarling . I had an 18 week induction last year (for a missed miscarriage though) and the same thing happened to me with the birth, my son was born but stayed up by my cervix instead of coming out. He was there for 12 hours until anyone realised. I've never heard of this happening to anyone else and it's nice to know that I'm not alone so thank you.

@kinsters thank you also. Likewise never spoken to someone else this happened to. If I'd have read about it before I'd definitely have realised that's what had happened but never occurred to me at the time. Sorry for you loss. I hope you're feeling OK xxxxx

@Missingmydarling I'm ok, currently pregnant again but it's not been an easy one.

I feel the same, wish I'd heard of it happening before. In hindsight it was so obvious what must have happened and I did beat myself up a lot for not realising at the time. But it's in the past now and what can we do except remember them and keep going forwards.

I hope you're doing ok too x

I felt like that for a time too. But if the midwife didn't realise, not sure how I was meant to! I have long cervix (don't tell everyone or they'll all want one) so I don't know if it's to do with that.

I'm very lucky to now have an energetic 17 month old. As he became more and more his own person with a little personality (rather than just generic baby) my grief did ease. I still cry for my lost little one. And I find it difficult because there are no happy memories to look back on like people do with most other types of grief.

Best of luck with the rest of your pregnancy @Kinsters