Continuing a Pregnancy with a lethal diagnosis

[TheDisillusionedAnarchist]

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.

Thanks we're all doing well. Rumer is breathing on her own! She has reflux but she's getting her g tube on Friday.

Scary putting her through surgery at this age, though the surgeons were very casual about it but likely to be useful long term.

We're still in neonatal unit but only because of the surgery. The fact they can only do it Friday means we probably won't get home until the following week. We are so ready to go home now!

She is having Pt, Ot and Salt already so she has a busy schedule. At least at home we'll have time for all her therapies.

Photos are of Rumer sleeping, not loving her chair and having skin to skin which she'd have all day if she could.

The photos have brought tears to my eyes, what an amazing little one.
The little darling, she is gorgeous- I love the grumpy look on her face when she's sitting in her chair!
Fingers crossed that she will soon be home with you and ((hugs)) too.

Just read your entire thread. Beautiful photos of a beautiful girl.
Hoping she is soon home with you and sending lots of love to a wonderful little family

Thank you for the update OP, and what a lovely update it is! Rumer is so gorgeous. So pleased that she's doing so well!

Oh she is Beautiful! I'm so pleased she's doing so well.

Beautiful

Just read this whole thread. Congratulations on your beautiful little fighter.

What a wonderful update.
Truly stunning little girl you have there OP.
So glad to hear you all get to go home soon

Lovely pictures! Hope you can take her home soon.

Lovely photos Disillusioned, made me cry. She looks so content. Your story is incredible, I am so happy for you all.

I hope you and your husband are doing well, you must be knackered.

I hope you are all home together very soon. .

Thank you for the update

www.facebook.com/Brynshelpinghand/info/?tab=page_info
Have a look at this page for contacts for someone who has gone through similar experiences.

So grateful for the update and the photos. Rumer is very beautiful and quite amazing. I'm so pleased she's doing well

She is beautiful

I hope her surgery goes well on Friday and you get to bring her home very soon

She is just gorgeous. So pleased to see your update. Hope her surgery goes well and she is home with you soon.

I'll be very honest if i may. When i first read your OP i thought why would this lady put herself through this.

Oh how i have changed my mind!!

You are just amazing. I don't have the words.

Your beautiful little girl!!!

your strength is inspirational and i hope that your time with beautiful Rumer continues.

Congratulations, thank you for sharing your beautiful photos of Rumer. I have to admit to crying reading your update, it's wonderful that you are having the chance to have precious hugs and time with her. I hope everything goes well on Friday and wishing you much happiness together.

Just wanted to post my final update to this thread. Rumer came through gastostromy surgery and we all love her button. She is doing well and the best news we are going home Wednesday!
We also had a discharge meeting with Rumer's whole team including PICU and A and E consultants and they have all agreed to an active treatment approach so we can take her home confident they will treat her appropriately if she becomes unwell.
Last meal out tonight for a long time and spend the night with her tomorrow before finally home. Thanks for everyone's support here during our journey with Rumer

Congratulations! Great to hear that you will all be home together at last. Enjoy your last night of freedom :)

:) she looks great :)

What a little doteen! Gorgeous little bundle of complete and utter joy. Much health and happiness to all of your family.

So thrilled for you to be taking your beautiful baby girl home. Best wishes.