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.

Oh CupOfTea that is heartbreaking. Thinking of you and your family xx

So very sorry

I'm sorry.

So very sad for you

You need to ask about your local children's hospice; they can usually provide support so you can care for your little girl at home. Some areas have children's community nursing teams which will also provide care and support for you, your baby and your family to stay at home. What area are you in?

How utterly awful. sending love to you and your family xxx

I wish your beautiful daughter the happiest life she possibly can have. Hold all your girls tight. Thinking of you and your family

Cupoftea, I am so sorry. I have no experience, but I would just echo what others have said. Cherish the time you have, letter your older girls be close to her, hold her, help name her, etc. Take loads of photos and video if you can.

Your dd3 is and always will be a part of your family. Thinking of you all x

Thinking of you & your family Cupofteaplease. How heartbreaking :(

oh cupoftea :(
i am so, so sorry.

I am so very sorry. x

I am so very sorry.

I hope you can make some precious memories in whatever time you have with your new daughter. Congratulations on her birth and I hope her sisters get to have a little cuddle with her.

Wishing you love and peace xxx

I am truly sorry to hear your sad news. I have lost a child that died shortly after birth so I do have a little bit of experience to impart.

You will obviously be in shock-this will all feel completely unreal and like it is happening to someone else. Have the support you need around you-be it your dh or other family members. Dont have anyone there that you dont want-even if you feel you should or they try and make you feel guilty.

I ditto what everyone else said about photos/footprints/locks of hair etc-although hopefully you will have a bit of time before your dd passes -you night forget these things. The staff should also be able to do things like dress her/bathe her if you are not up to it. They can also take the pictures and they can be kept for you to look at a later date if it is too much right now.

Ask-or have someone ask for you-that you only deal with a few members of staff/midwives so you dont have lots of strangers traisping in and out.
In my situation I had a private room-A Sands one-which had a note on the door explaining briefly the situation and our need for privacy.

I really regret not letting our other ds meet his brother. He was quite young at the time and didnt really understand the pregnancy. But it would be nice for us as a family to have been together.
Please try and not worry too much about your other dd's-children can often find it easier to accept things than we can. The hospital should again be able to offer some advise on how best to handle the situation.
Once again-my sincere sympathies to you and your family. Please feel free to pm me if you have any questions I may be able to help with.

so very, very sorry cupoftea

I am so sorry to read this cupoftea.

Hope you can make some memories which will bring you comfort in the future x

Sending much love and strength for you and your daughter cupoftea

Oh darling, I'm desperately sad for you. Like others have said, you daughter is part of your family and always will be, so make sure you make the most of it. And don't hesitate to ask for support. Sending you warm wishes for spending this difficult time with as much comfort and love as possible.

So very sorry to hear your news. I have been through something similar and although we could not bring our daughter home, it is something I would have dearly loved to do. Please consider calling the ACT helpine as this is focused towards families with palliative care needs for neonates (part of Bliss). Best wishesxx

ACT helpline: 0845 108 2201
and the weblink is below.
www.act.org.uk/landing.asp?section=23&sectionTitle=Help+for+families

I'm so very, very sorry for you CupOfTea. Everyone else has already said it, I know, but I am sorry, too, and wanted to post that, even if it doesn't help.

I'd echo what the posters above me have written: love her as fiercely as you can now, while she's here. I like what someone posted about telling her sisters how much she wanted to meet them. And take as much support as you can from anyone around you.

Your family will be in my thoughts x

I am so so very sorry, my thoughts and prayers are with you, your DH and your DDs. xxxx

i am so sorry for you all x

Have been sat here for an hour trying to search for the right words.... there are no right words.

I agree with many posts on here that say to talk to your DC and explain as much as possible what is going on. Children can handle anything as long as they are not lied to. They pick up quickly on fibs.

You will be in my thoughts and prayers xxxx

My thoughts and prayers are with you CupOfTea, so very sorry that you are going through this. Don't know if my message will help but wanted not to read and run xx

So sorry for you all ,wishing you strength x

Oh sweetheart! I'm am so very sorry for you. Thinking of you and your family. xxx