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.

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

xx

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?

x

I am so sorry

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

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.

I'm so sorry x x

here's a link to the SANDS site

wishing love and strength to you and your family.

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

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

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

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
xxx

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

So so sorry. x

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

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

I am so so very sorry

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

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.

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

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

Thinking of you xx

So sorry to read this, Cupoftea.

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

So sorry cupoftea, thinking of you and your family.

I am so sorry. so, so sorry.

So very sorry. X

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

I am so sorry for you.

Please don't worry about telling your older children - they will be ok.

Two years ago I was told my DS would die shortly after birth. At that time my other DC were 3 and 4. We explained to them that their brother was very poorly because he hadn't grown properly and would die. In time they had lots of questions, but they really took things at face value and they were an enormous source of comfort because they were so open.

The hospital were extremely supportive and we were assigned a bereavement midiwfe who encouraged us to bring our older children to the hospital so they could meet their brother.

In the event my DS died during labour.

Enjoy the time that you have with your DD and I hope you create some treasured memories.