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Continuing a Pregnancy with a lethal diagnosis

260 replies

TheDisillusionedAnarchist · 11/06/2015 20:02

I am 23 weeks pregnant and sadly it was confirmed yesterday that our baby has Edwards' syndrome (trisomy 18). We had already known that he or she had a very complex cardiac defect, a small brain anomaly and a possible diaphragmatic hernia so we had partly anticipated this.

We both are committed to continuing the pregnancy, termination just doesn't feel like the right option for us, though I can completely understand how it does for many people. I wondered if there were others out there who had or are continuing a pregnancy with a lethal diagnosis and how they are handling people's questions and ideas about birth plans when you are not sure if the baby will be born alive or not and how long it may live.

OP posts:
GoldPlatedShitGibbon · 03/11/2015 10:17

Ooh, she's lovely.

Will you posting to let people know how she gets on at home, Disillusioned, or are you heading back to anonymity now? Best of luck either way. Smile

Chrysanthemum5 · 03/11/2015 10:21

So happy for you. Rumer is beautiful. Thank you for sharing your story with us all.

Stylingwax · 03/11/2015 10:24

Beautiful little girl, thank you for sharing your story Flowers

Cirsium · 03/11/2015 10:32

So pleased you are getting to take your gorgeous girl home and that they have agreed to active treatment if required. Wishing you all the very best. I have loved reading this thread.

Nonnainglese · 03/11/2015 10:37

It's been an amazing journey for you all, here's to the next step!
Wishing you all the very best xx

sunshineandshowers · 03/11/2015 10:49

She is truly perfect and beautiful xxx

Owllady · 03/11/2015 10:55

She's just lovely isn't she? :) all the best for the future x

Twowrongsdontmakearight · 03/11/2015 12:17

Fantastic news! Your lovely Rumer has filled out nicely. Enjoy having her home to love. X

bexcee8 · 03/11/2015 13:00

Wishing the three of you all the very best for your future together.

An amazing story and I'd like to thank you for sharing it with us. Been like an emotional roller coaster ride so goodness knows how you feel!
Take care of each other X

Branleuse · 03/11/2015 13:49

She is incredibly beautiful. Congratulations x

NationMcKinley · 03/11/2015 13:54

Oh she is lovely. Congratulations and all the very best Smile

KittyandTeal · 03/11/2015 14:21

Wonderful news! Congratulations on being able to take her home

summerdreams · 05/11/2015 13:11

Not sure if ive posted before but been lurking congratulations. An inspiring story of hope and a beautiful little girl Flowers hope you have a lovely time with you miracle.

elliejjtiny · 06/11/2015 18:45

That's great news.

PontyGirl · 09/11/2015 14:59

Fantastic news! Well done Rumer!

regularbutpanickingabit · 09/11/2015 15:02

Amazing news. Congratulations to you all.Enjoy your miracle girl.

thequickbrownfox · 09/11/2015 15:17

She's beautiful. What a moving story and what a privilege to see your photographs. You are a lovely mum. Wishing you all lots of love and luck for the future OP x

Gaspard · 22/11/2015 12:52

This reply has been deleted

Message withdrawn at poster's request.

TheDisillusionedAnarchist · 01/01/2016 18:04

A definitely final update. Rumer died at 7.17am this morning. It was a good death. We have few regrets.

OP posts:
imip · 01/01/2016 18:09

Flowers disillusioned

Much love to you and your family, what a special time you had with Rumer. I lost my dad almost exactly 10 years ago at 25 weeks. Such a difficult time ahead, but you have some very beautiful memories.

Go gently....xxx

imip · 01/01/2016 18:09

Dd, not dad, she would have been 10 on Monday...

lougle · 01/01/2016 18:10

Merry Christmas, Rumer, and Happy New Year! I'm so glad you were given the chance to see it. Flowers

TDA, I'm so glad you spent the last few weeks with your precious girl. I hope the memories outweigh the grief, in time.

FoxesSitOnBoxes · 01/01/2016 18:16

What a beautiful thread. Thinking of you and your lovely little girl Flowers

helensburgh · 01/01/2016 18:18

Thinking of you all. What a beautiful girl

KittyandTeal · 01/01/2016 18:20

I actually don't know what to say. Im sat here crying for you.

I don't want to say I'm sorry for your loss, because I'm happy and glad you got that small amount of time with your beautiful girl. I'm sorry it wasn't longer.

I guess I'm sorry T18 is a thing that exists and takes our babies. It's shit.

Thinking of you all now Flowers