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.

Wow. Such as amazing story. She is a stunner. Such a testament to your live and determination. Xx

Just sending you a hug . Since finding this thread by chance on active convos I've been thinking of you all. As have many others ! Sincerely think you are a brilliant mum to your little girl.

Congratulations and thank you for sharing your lovely photos!

Still thinking of you. You've come a long way and fought hard for little Rumer and we're all cheering you on. Thank you for letting us see her, she's a lovely baby.

Wonderful update and a beautiful new pic.
So very pleased for you all

What wonderful updates. Such a journey you have been on. She is a very special young lady indeed.

Truly amazing story, you and your little family are beautiful. Thank you for sharing photos of such precious moments, may there be many more to come.

I hope labour was kind to you op, and you're recovering ok, both physically and emotionally. Much strength and hope to you, your dp and the incredible baby Rumer xx

Thinking of you OP

Fantastic updates and beautiful pictures. Thinking of you all

What a sweet baby! Thank you for letting us see the photographs, they are wonderful and your daughter is absolutely lovely. I'm so pleased that things are going well.

Thank you, we're all doing well. Rumer had a slight blip coming off cpap so has moved to vapotherm which is much nicer. Unfortunately she now has reflux which isn't helping her, today's neonatologist is anti reflux treatment so we'll have to see how it goes. We finally went home today, is so hard leaving her
Picture is of Rumer on vapotherm

Trying again with the picture

Thank you for the update.
Sorry to hear that she has had a blip. Glad you are all well overall.
I'm sure you know already, but it is so important for you to have time at home to rest and take the break. You are so much better able to deal with hospital life when you are well rested and taking care of yourself.

So glad to hear you're all doing well. It must be so hard leaving Rumer, but you need good rest and a time to collect your thoughts too. Don't feel bad about that. I've been thinking about you all and sending good vibes your way, and I look forward to your next update

Congratulations. She is so sweet! Loved the colostrum pic, I've been there too trying to get that in to the tiny tube. . Make sure you get some rest.

Oh how wonderful to hear from you again. Hope you and DH were able to recharge your batteries and slept well. Bet you can't wait to get back to baby Rumer this morning xx

Just catching up. I loved your last photo. Sorry to hear Rumer had a blip, and reflux is nasty but it sounds like you're enjoying your lovely daughter. X

Best wishes to you and your lovely girl. What a sweetie she is. Enjoy!

Congratulations on the birth of your beautuful daughter Rumer.

It is so hard when you go home and leave your little one in NICU or SCBU. Please be reassured you need your rest and recuperation and she is in very capable hands. It is exciting to return and see her. Well done with the colustrum and expressing, it is hard work but can make such a difference and made me feel I was really doing something to help by concentrating on getting those precious drops (as that is all it was to start with) for my baby.

Thinking if your new family unit and offering prayers for you all xxx

Just read this amazing thread. Congratulations on your precious little girl. Sending you love and strength

What an amazing thread and a beautiful family. Congratulations, rest up and stay strong

It's hard going home and leaving the. Isn't it, I was 'lucky' in that I was poorly too so could stay in for the first two weeks, having done many night shifts in NICU because postnatal was noisy and I couldn't sleep I can honestly say the staff are amazing. Many a time they'd be cuddling or singing to a unlettered little one and they were always more than happy to take a phone call from mum even at 3am

Use the time to rest and heal yourself

Thinking of you and baby Rumer, OP

Still thinking of you all OP

Me too