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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:
Cataline · 01/01/2016 18:20

So sorry to hear this but also so pleased you got all that wonderful time with your gorgeous little Rumer. Wishing you much strength and love. Thank you for sharing your story.

Purplehonesty · 01/01/2016 18:23

Thinking of you all and sending love. Pleased you had time with her before saying goodbye.

nannyplumislostinspace · 01/01/2016 18:38

So sorry. She was a beautiful little girl. Flowers

PotOfYoghurt · 01/01/2016 18:38

I'm so sorry you didn't have more time disillusioned.

Thanks
Butterfliesprettybutterflies · 01/01/2016 18:40

What an amazing thread - how wonderful that you had 3 months with your beautiful DD. You and she have both been incredible. Flowers

Thurlow · 01/01/2016 18:44

I'm so sorry Flowers I've just read this thread from start to finish, and it was so beautiful to read that from your original plans, you got to have time with Rumur at home, and have Christmas and New Year too.

My thoughts are with all of you x

TimeforaDietCoke · 02/01/2016 15:18

I'm very sorry for the loss of your lovely baby. Thinking of you and your family Flowers.

weebarra · 02/01/2016 15:20

I'm so sorry for the loss of beautiful Rumer, but I'm glad you got to take her home and spend Xmas with her. Wishing you much strength.

RJnomore1 · 02/01/2016 15:28

So sorry she's gone. She lived every day surrounded by love. Strength and peace to you and your family Flowers

BitchPeas · 02/01/2016 15:28

I'm so sorry for your loss. You have been so brave and strong. Rip beautiful baby Rumer Flowers

BingoBonkers · 02/01/2016 15:41

What a beautiful girl with a beautiful name. The world is a poorer pls e without her.

I'm sure you've had a roller coaster three months together. Nobody can take the precious memories from you.

I hope you are able to reach out for professional support as abs when you see fit.

Flossiesmummy · 02/01/2016 15:47

So sorry to hear of Rumer's passing. I think you made an incredibly brave choice and the way you fought for her early care was very much the right decision.

I only just found this thread but from reading all your updates you seem such a strong woman. Respect.

Such a beautiful little girl. I'll be thinking of you. Thanks

BifsWif · 02/01/2016 16:07

I am writing this with tears on my face. I'm so glad you got three precious months with your beautiful daughter, but I am so very sorry it wasn't a lifetime longer.

Life can be so cruel. You're in my thoughts and if I may, I'll light a candle for your beautiful girl this evening Flowers

Strokethefurrywall · 02/01/2016 16:13

My sincere condolences to you and your family Thanks

nearlyreadytopop · 02/01/2016 16:23

I've been following your thread disillusioned and I don't really have the words for you at the moment. I'm sorry for your loss but how wonderful to have had three months together Thanks

FATEdestiny · 02/01/2016 16:26

3 months of joy with your very precious little girl. You always did the best for her disillusioned

Gobbolinothewitchscat · 02/01/2016 16:26

I'm.so desperately sad to hear this.

Thank you for sharing Rumer's story and such beautiful photographs.

Wishing you strength and courage and hope xx

Chocolatekeepsmesane · 02/01/2016 16:45

I'm so sorry to see your latest update. I'm glad you had your time together Rumer was so beautiful. Thanks

YouBastardSockBalls · 02/01/2016 16:49
Flowers

You should be so proud of yourselves for giving your daughter the chance to experience so much love and warmth in her life. You sound like such lovely, wonderful, brave people and I'm so pleased for you that you got to spend time with your beautiful, beautiful little girl.

Lots of love and unmumsnetty hugs xxxx

YouBastardSockBalls · 02/01/2016 16:49

And RIP Rumer xx

P1nkP0ppy · 02/01/2016 16:53

So very sad to hear this, Rumer will have given you so many precious moments and memories in her all too brief life, bless her.
💐 and ((hugs)) x

Cirsium · 02/01/2016 16:54

So sorry to hear your sad news. But glad you were able to have the time you did with your beautiful baby girl. Xx

bimandbam · 02/01/2016 16:57

So so very sorry to hear she has gone. But she will have known a lifetime of love in those 3 months. You and your family are in my thoughts and prayers and I hope you find some peace from knowing her. Flowers

FadedRed · 02/01/2016 17:04

Oh bless you all, you've been so brave and strong. Flowers
So sad to see your update.

Helsbels81 · 02/01/2016 17:10

So so sorry to read this update.

Your immense love for Rumer came through in all your posts. Hold on to the precious time you had with your lovely girl. You have been so strong and fought for her at every step. You did her proud x