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.

sending love and strength xxxx

Just thought I'd check and see how you all were doing. Such beautiful, beautiful girls, thank you so much for showing us your pictures. Thinking of you and all your family often.

Your girls are all beautiful. Lovely, lovely pictures of them all.

Wishing you love and strength x

Beatrice is one of the most beautiful newborns I have ever seen! Those eyes! She looks completely content and happy, she obviously knows how much she is adored. Enjoy her x

She's an incredibly beautiful little girl. I'm so sorry for you and your family. I wish you so much strength and love in this awful time. Draw strength from each other and love your beautiful girl as hard as you can.

I'm so sorry xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Wow, She is absolutely beautiful and agree with Mackeral that she is one of the most beautiful and adorable babies i have ever seen.
She looks so well. Im sure she know's you love her with all your heart and all your family do too.
It must be helping and comforting her knowing she is so well loved.

Beautiful Beatrice. xxx

Thank you for sharing your beautiful girls with us

I have 3 girls too, and DD2 was in NICU for 6 weeks, oh it is the hardest journey! I am thinking of you and do let us know if there's anything we can do for you xxx

THEY GOT IT WRONG!!!!! It's NOT Edwards syndrome! Early genetics tests show it is none of the life limiting syndromes. She obviously has some neurological problems that have and will effect her development but they may not be life threatening. For now, she faces the same fights as other prem babies, to feed and grow and get stronger, but she's clearly a fighter.

I can't thank you all enough for the love and support that I have gained from the messages here,it has been such a lonely and heartbreakimg time. Thank you xxx

OMG!!
That is FABULOUS news!!

What a rollercoaster of emotions you've been through!

I have this urge to grab your hands and jump round the room :o

OH MY GOODNESS! what amazing news!

Oh I am so pleased to hear that!

Cupoftea - I am sat here with tears in my eyes. I really wasn't expecting your news, which is so much more hopeful. God Bless you and your lovely little family x

Yay! Great news!

Oh, and she's so beautiful

OMG, that's bloody brilliant! Fantastic news, am so happy for you I could cry! (and probably will)

I hope that she comes through all her tribulations and grows well, feeds well, gets out of SCBU and comes home to live and fight for a loooong time.

So very very happy for you

(((hugs))) xx

Fantastic news, very very happy for you.

Oh what wonderful news :)

I woke up thinking of you all and am now in tears.

I am so very pleased for you.

Have been following this and just burst into tears at your last post!

Such great news, you never gave up hope. Huge hug to you and your gorgeous girls!

What fantastic news! I too am here with tears in my eyes, so so happy for your family. I hope you manage to get home soon. Lots of hugs xx

WOW just WOW

That is great news! How weird though I was looking at your pics of your DDs earlier and when I saw the one of Beatrice on her own I thought "They have gotten it wrong and she will come on and say that today". Honestly! I must be psychic! I hope the problems she has are not too severe. Now go give her lots of cuddles :)