My newborn girl is going to die, not sure what to do now.

[cupofteaplease]

I gave birth to our little girl yesterday at 1.15pm. They told almost straight away they thought she had Edward's Syndrome. Now they think her brain just didn't develop. Noone can tell us how long she will be with us, nobody knows.

My two dds are 6 and 4 and were so excited about their baby sister. They are coming to meet her later. How can I tell them she will die?

As she is breathing unaided and tube feeding, they are caring for her in SCBU, but I have said if they can't do anything, I want to bring her home to spend her last time. I wish we knew how long she had.

I think my heart is breaking.

Fantastic news! x

Oh cup, happy tears here too, I have been wishing and wishing so hard for you that this could somehow not be true, can't believe they could actually have given you a wrong diagnosis. The world seems a brighter place for having your little Beatrice in it. So so happy for you, sending lots of love x

It's not often I sob like this, read the whole thread - amazing she is the most beautiful thing :) sending you all but especially baby Beatrice lots of love and hope you're home with her in super speedy time

Wonderful, wonderful news! In these sorts of cases, we doctors are DELIGHTED to be proved wrong! She has beautiful eyes and a beautiful name. Will be thinking of you in the days to come.

Wonderful news. She's just beautiful x

God bless you and your lovely baby girl. xxxx

I read your story last night but couldn't find the words...logged on to post my support this evening and WOW! Fabulous news and happy tears here too. Welcome to the world Beatrice, you're already a little miracle who has touched a lot of lives. Sending you all lots of love and hope you're all home together very soon with your beautiful new daughter x

Thank you all again.

We still have a long road ahead, the geneticists are still trying to get to the bottom of her problems. She does not move much, which is troubling them (and us) so we NEED her to feed, move and grow. She has surprised everyone already, I am willing her to keep fighting. She is so beautiful, but still so uncertain.

I felt extreme happiness today, but the stomach twisting fear of the unknown as well. It's all down to Bea now.

Wonderful, wonderful, wonderful

I haven't posted so far, but fab news for your family. She is beautiful.

She's so beautiful

(((hugs))) to you and your family

Fantastic news! :)

So so happy to read it was a mis-diagnosis, cupoftea, and what an awful thing for you to go through. Little Bea is so beautiful! I hope she will be home with your family v soon. x

Great news!

cupoftea you are going through such a roller coaster atm . I know the brilliant news is to be celebrated but you sound like you can't quite let yourself until you know exactly where you and your gorgeous girl stand .

One hour at a time for now , that is all you have to do . Anything else can be dealt with as and when it needs to be .

Be kind to yourself and please try and look after your health too .

Oh she is so beautiful...

All my prayers...

Fingers crossed for you and beautiful little Bea xx

oh im soooooooo happy for you!
your family has been in my thoughts all day im so chuffed for you.

tears to my eyes
music to my heart
much love
xxx

Wow....amazing. She is adorable, a fabulous addition to your beautiful family.

Wow, what a time you're having. Are they encouraging you to touch her? I'm sure that having oodles of skin-to-skin loving will go a long way towards helping her, in that amazing way that human touch does.

Wonderful news cupoftea!!!!!!!!

She is beautiful!!!!!!!!!!!!!!!

Wonderful news! You have a very beautiful family!

You know cup, when I saw Beatrice's picture, I thought, hmm. no obvious signs of Edwards syndrome. I know I am just a layperson, but did investigate it for myself (always have my little bro in my heart) and I thought, she just doesn't look like it. Hard to explain, but they do tend to have a pixieish look. all a bit pointy. I know its nonsense on my part. but just so happy for you.

Well, what a positive turnup!

I know that you still don't know what Bea's diagnosis is (beautiful name btw), so what hurdles you all have to face in the future, but for now things have taken a very good turn towards something much more positive.

I'm thrilled for you all, but please do look after yourself cupoftea, an infected wound needs careful treatment.

xx

Absolutely stupendous news. I am so happy for you. The love in your family shines through in the photos of your lovely girls. Xx