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

(1003 Posts)
cupofteaplease Sat 17-Sep-11 12:09:12

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.

SugarLemons Sat 17-Sep-11 12:11:25

Didn't want to read and run. I'm so so sorry to hear about your DD.

I hope her passing has no suffering. No doubt someone more knowledgeable will come along soon


mumatron Sat 17-Sep-11 12:12:47

you poor, poor thing.

did you have any idea there would be anything wrong with her?

no advice for you i'm sorry but i couldn't read and not post.

have you named your dd?


rubyslippers Sat 17-Sep-11 12:13:47

I am so sorry sad

I have no experience of this - but couldn't read and not post

D0G Sat 17-Sep-11 12:14:25

Message withdrawn at poster's request.

ArmageddonOuttahere Sat 17-Sep-11 12:14:44

Oh my love, I am so sorry. Do the hospital have a representative from SANDS who you can talk to? They were truly wonderful when a friend of mine was in your situation.

talkingnonsense Sat 17-Sep-11 12:14:56

I'm so sorry x x

ArmageddonOuttahere Sat 17-Sep-11 12:16:20

here's a link to the SANDS site

wishing love and strength to you and your family.

mycatsaysach Sat 17-Sep-11 12:16:34

so sad and so sorry.thinking of you and your baby daughter xx

Sirzy Sat 17-Sep-11 12:17:02

not sure what to say but my thoughts are with you all. Hopefully someone will read who has some practical advice to help you through this tough time x

ChippingIn Sat 17-Sep-11 12:17:58

Oh my love - I am so, so sorry xxx Of course your heart is breaking sad

Cuddle her as much as you can, take lots of photos of her, some little plaster hand & foot prints etc - give her lots & lots of love. Take some photos of you and your older DD's with her. Cram as much love into every day you can.

I would tell the girls that their little sister didn't grow properly inside your tummy and that her brain isn't working properly - that she wont be able to grow into big girls like them but wanted to meet them before she went to heaven (with x if you know anyone close who has died). It might not be text book, it might not be what others would do, but it's what I would do.

I hope you have family & friends supporting you.

Sending you lots of love & strength

andiem Sat 17-Sep-11 12:18:21

cupoftea so sorry to see your post, you can take her home or go to your nearest children's hospice with her. I have looked after some families in your situation at the hospice where I work. Ask the staff on your scbu to contact them for you they will be able to offer you lots of support and help even if you don't choose to go there.These moments you have with her are so precious. I am so so sorry about what is happening to you. I have to go out now but will check the thread later. If you want any advice post and I will try to answer any questions you have.
Take care of yourself and your darling daughter andiem x

meplustwo Sat 17-Sep-11 12:19:25

So so sorry. x

lisad123 Sat 17-Sep-11 12:21:32

im so sorry to read this, and thinking of you all, while you get to spend a little time with your beutiful little baby girl xx

WhoresHairKnickers Sat 17-Sep-11 12:21:40

sad sending love and prayers to you cupofteaplease I am so sorry.x

DizzyCow63 Sat 17-Sep-11 12:22:39

I am so so very sorry sad

Words are useless but you and your family are very much in my thoughts and prayers x

AnnieLobeseder Sat 17-Sep-11 12:23:23

cupoftea, that's so heartbreaking. The uncertainly and waiting must be devastating. As others have suggested, take photos, make memories. I hope you get to take her home, so that she can spend what time she has with her loving family all together. Huge hugs to all of you.

Marne Sat 17-Sep-11 12:25:45

So sorry cupoftea, i can't begin to imagine what you and your family are going through sad, be truthful with your dc's, tell them their sister is very poorly, let them share the precious time you have with her.

Doyouthinktheysaurus Sat 17-Sep-11 12:39:52

I am so sorry cupofteaplease, I hope you and your family have some treasured time with your new daughter.

Thinking of you xx

MmeLindor. Sat 17-Sep-11 12:45:16

So sorry to read this, Cupoftea.

frasersmummy Sat 17-Sep-11 12:46:58

oh god cupoftea...I am so sorry ..

As others have said .. spend what time you can with your precious daughter

I think its lovely that your other dds ae coming to visit I think the phrase chipping used is perfect

I hope you have lots of support around in real life .. but we are all here to listen ..there are unfortunately lots of mum on here who know what you are going through

enjoy your dd while you have her

cheekydino Sat 17-Sep-11 12:50:12

So sorry cupoftea, thinking of you and your family.

OracleInaCoracle Sat 17-Sep-11 12:51:24

I am so sorry. so, so sorry.

withLainintheWired Sat 17-Sep-11 12:51:32

So very sorry. X

stickylittlefingers Sat 17-Sep-11 12:51:34

I hope you get some more information soon, cupoftea. Sending you lots of love xx

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