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Original poster

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:
elliejjtiny · 27/09/2015 14:29

Congratulations on your lovely girl. There was a little girl at DS2's pre-school who had Edwards syndrome. We lost touch after she and DS went to different schools but she was doing very well last time I saw her, aged 5. She had severe disabilities but was very much alive and always looked as if she was deep in thought.

Cirsium · 27/09/2015 15:22

Thanks for the updates and lovely pics. That is far more colostrum than I ever managed to express! Glad Rumer is doing well, continuing to pray for you (hope that's OK)

Twowrongsdontmakearight · 27/09/2015 15:50

Congratulations on your beautiful daughter. Xx

Original poster
TheDisillusionedAnarchist · 29/09/2015 07:04

Rumer was extubated on Sunday at 1900, now stable on bipap. Her lovely neonatologist thinks she'll need it for a couple of weeks until her lungs grow. She is doing so well.

I am tired and emotional, this was never the outcome we expected, we didn't dare hope for this but so pleased and amazed we're here

OP posts:
Nonnainglese · 29/09/2015 07:20

I'm just so thrilled for you all, fingers firmly crossed.
What an emotional roller coaster for you, she's a real little star.

QuietIsland2 · 29/09/2015 07:27

She looks lovely and cosy. Delighted she's doing well. Xxxx

twirlypoo · 29/09/2015 07:44

Congratulations op, your daughter is clearly a fighter and so beautiful! Thank you for the update, your family is in my thoughts x

Boobyroof · 29/09/2015 07:46

Thank you for posting these wonderful pictures. Your daughter is just beautiful and you are a wonderful Mummy, many many congratulations. Xx

loveandsmiles · 29/09/2015 07:57

What a truly wonderful and uplifting post - thank you for sharing Flowers. Wishing you and your special family a future filled with love and happiness x

LoveChickens · 29/09/2015 08:13

Oh what a positive update. Congratulations xx

HSMMaCM · 29/09/2015 08:19

She is beautiful.

pnutter · 29/09/2015 09:00

Your love for Rumer (gorgeous name by the way) just shines out of this thread and your lovely photos . Wishing you all the very best she is beautiful x

FattyNinjaOwl · 29/09/2015 09:30

What amazimg photos. And such a beautiful girl! (Like her mummy)

I came across this earlier this summer, and could not bring myself to read as I too was pregnant. I have just sat and rtft and I have been in tears of sadness for everyone who has been through such a horrendous time, and again of joy for you and your family.
Flowers for all those who have lost children
Flowers to you OP, you and gorgeous rumer are both Star s

lavendersun · 29/09/2015 12:35

Lovely news OP and another lovely photo, it feels like you are sharing something ultra special with us all on this thread, tears here too.

You sound so strong and together. Everyone is right, your love for your lovely baby shines bright in every word you write.

RedKites · 29/09/2015 12:41

Congratulations on your lovely DD Flowers

ShowOfHands · 29/09/2015 12:55

What a beautiful little girl you have. Thank you for sharing your story and photos. Rumer is lovely and your love for her really does shine brightly.

Congratulations.

icclemunchy · 29/09/2015 12:56

Congratulations on moving to bipap I'm so glad she's doing well.

Be kind to yourself too, DD2 spent 3 weeks in NICU/SCBU so I know how draining it can be. Fingers crossed for even better news at the next stage Thanks

YoureMyWifeNowDave · 29/09/2015 13:00

Congratulations on your beautiful daughter, I hope she continues to surprise you and goes from strength to strength

InQuiteAPickle · 29/09/2015 13:42

She's absolutely beautiful! Congratulations Flowers. You must be so so proud of her.

Goingtobeawesome · 29/09/2015 14:50

What lovely photos. So kind to share.

Wonderful update. I wish you all the best.

ThumbWitchesAbroad · 29/09/2015 15:01

Congratulations on the birth of your beautiful Rumer, Disillusioned - I'm so glad you got to meet her and that she is exceeding expectations daily! hope she continues to do so for a long time to come. xx Thanks

PoppadomPreach · 29/09/2015 15:01

Many, many congratulations. You have a very beautiful daughter, and she has a wonderful mother.

An inspiring thread.

PontyGirl · 29/09/2015 20:58

I have been so moved by your story. I will continue to think of you and Rumer in the coming days, she sounds like a real fighter. I hope you manage to get some rest, though I imagine it's hard to pull yourself away from her Smile Brew

Maplessglobe · 29/09/2015 21:28

This reply has been deleted

Message withdrawn at poster's request.

TheMightyMing · 29/09/2015 21:39

Just reading this. Just amazing. To have come this far is a credit to your love and determination. Rumer is beautiful and I will be praying hard for you all.