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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:
Cirsium · 25/09/2015 23:41

Congratulations. She is beautiful. Hoping and praying she has as much fighting spirit as her parents. She is a lucky girl to have you in her corner. Flowers

DriverSurpriseMe · 26/09/2015 00:11

I remember your thread from earlier this summer! So glad you reached term, and I wish you all the best for the road ahead. Rumer is a lovely, unusual name.

ellenjames · 26/09/2015 00:18

Congratulations she is beautiful Smile

AndNowItsSeven · 26/09/2015 00:22

Congratulations, I remember posting while you were pregnant. Rumer is so beautiful. I hope you don't mind if I pray for her. Flowers

spatchcock · 26/09/2015 00:42

Congratulations, what a beautiful wee baby.

stareatthetvscreen · 26/09/2015 01:25

aw have just rtft - congratulations xx she is gorgeous :)

giraffesCantDoThat · 26/09/2015 01:53

www.everylifecounts.ie/stories/macy-mae-baker/

I knew this lady and her dd Macy from another forum. Her dd had trisomy 13 and lived for 2 yrs x

DeputyPecksBentBeak · 26/09/2015 03:08

She is beautiful OP Smile

So pleased you've had the chance to meet her

Everstrong · 26/09/2015 03:47

Wonderful news! What a beautiful baby girl!

Congratulations OP, enjoy every minute of Rumer Flowers

Lolly86 · 26/09/2015 04:04

Congratulations on beautiful Rumer xx Flowers

ajandjjmum · 26/09/2015 04:27

Congratulations on the arrival of Rumer - she is beautiful.

WanderingTrolley1 · 26/09/2015 06:30

Congratulations Flowers

badgerpillow · 26/09/2015 06:36

Congratulations! Flowers

zippyswife · 26/09/2015 07:47

Wow. She is a beautiful little thing! Congratulations xx

Hopefullyhoping · 26/09/2015 10:46

So many congratulations, she really is beautiful. I hope so much that you have many many happy times with your darling daughter

Gingerlady123 · 26/09/2015 18:12

Congratulations, she is beautiful. And a beautiful name.
I wish you and your family all the best xx

definiteissues · 26/09/2015 19:36

Congratulations and what a beautiful name.

I wish you all the best for the next part of your journey x

Gunpowder · 26/09/2015 19:46

She's gorgeous. Congratulations.

Penfold007 · 26/09/2015 19:46

Congratulations, such a lovely name for your beautiful daughter Flowers.

Goingtobeawesome · 26/09/2015 19:46

Best news of the day.

Welcome Rumer. A new mumsnet baby. Wonderful Flowers.

notapizzaeater · 26/09/2015 19:53

What a beautiful name for a beautiful little girl. Congratulations x

Hushabyelullaby · 26/09/2015 20:14

Rumer is so beautiful! Massive congrats to you on her arrival Flowers

Chocolatekeepsmesane · 26/09/2015 20:41

Congratulations she is so beautiful Flowers

TheDisillusionedAnarchist · 27/09/2015 02:17

Many thanks for the congratulations! Rumer continues to surprise us all, on minimal ventilator settings and the plan is to extubate her possibly tomorrow!
Cardiologist is very positive and thinks low risk of coarctation and happy with the rest of her heart. They will assess her diaphragm once she is extubated but they are confident no hernia.
She had 1ml colostrum today (took 3 hours work) and had skin to skin with DH. She is no longer on morphine so is very active and DH changed lots of nappies. So far, so good.
The next big hurdle is extubation so we're nervously awaiting tomorrow.

OP posts:
TheDisillusionedAnarchist · 27/09/2015 03:12

Skin to skin with Rumer
Seeing her again in Nicu
Hard won colostrum

OP posts: