Active discussions

Please or to access all these features

Talk
Bereavement

Find bereavement help and support from other Mumsnetters. See also your choices after baby loss.

Original poster

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

1002 replies

cupofteaplease · 17/09/2011 12:09

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.

OP posts:
TheOriginalFAB · 23/09/2011 20:57

Oh love Sad.

Is there anything we can do?

bumpybecky · 23/09/2011 20:59

I'm so sorry :(

will be thinking of you and your girls

IwishIwasmoreorganised · 23/09/2011 21:00

Oh cupoftea, this thread is like an emotional rollercoaster. I'm sorry to hear what you have been told today.

I am very pleased though to hear that the beautiful Bea will be going home with you all tomorrow to be surrounded by those who love her most and who will cherish the time that they can spend with her.

I'm with you in hoping that they've got this wrong again, but the MRI scans will only show things as they are. What they can't do though is to tell you how long Bea will be with you, or what she will achieve. Only time will tell but she's already proved everybody wrong once, and she looks such a little character that I hope she goes on to amaze everybody again in the future.

xx

crazynanna · 23/09/2011 21:00

Oh no,Cupoftea..oh no I am so,so sorry Sad

MirandaWest · 23/09/2011 21:01

I am so sorry as well :(

WorzselMummage · 23/09/2011 21:06

Oh lovely :( I am so sorry :(

Original poster
cupofteaplease · 23/09/2011 21:06

I'm so scared. So terribly scared. And I feel so stupid for getting excited that it wasn't Edwards. I could see there is a problem with Beatrice but allowed myself to be swept along a wave of positivity. How stupid, now I have to tell everyone that it's not ok. This week has felt like an eternity. And still I ask myself, how did nobody know it was going to be this bad? I'm so angry, and sad, and and and... I've no idea how I feel.

OP posts:
Whatevertheweather · 23/09/2011 21:08

Oh cupoftea - I was just coming on to see how you were doing and to say I hope little Bea is getting stronger. I am so so sorry to read your latest update. My heart really goes out to you, your dp and dd's. How difficult this uncertainty must be for all of you.

I wish you the most peaceful time you can have all together, building a lifetimes worth of memories with beautiful Beatrice.

xxxx

crazynanna · 23/09/2011 21:10
WorzselMummage · 23/09/2011 21:10

You dont have to be scared :( It's not your fault, no-one will think any less of you for being positive.. it's not stupid, it's human nature.. you are a parent, it's your job to think positive.

Did you read the blog that I linked to on the first page?

bibbitybobbityhat · 23/09/2011 21:10

Your family are very much in my thoughts xxx

ColdSancerre · 23/09/2011 21:11

Cupoftea you aren't stupid at all for hoping for the best for your little girl and no one will think of you that way. Please don't think that.

I'm so sorry I wish you weren't going through all this. I hope having at her home tomorrow is a comfort for you.

tadjennyp · 23/09/2011 21:12

So sorry, cupoftea. Second the idea of posting in SN as someone there may be able to give you some good advice. In our thoughts x

Lcy · 23/09/2011 21:12

Thinking of you cupoftea, little Bea and all your family XXX

Lcy · 23/09/2011 21:14

You are obviously a wonderful mother X

oooggs · 23/09/2011 21:16

thinking of you and your family and hoping you all find the strength to get through this difficult time. Beatrice is proving to be a little fighter I also hope she proves them wrong again x

suzikettles · 23/09/2011 21:23

Oh cupoftea, I'm sorry it still looks so bleak and they can't give you any reassurance.

I hope you get to make many, many happy memories with Beatrice and more times many. Sometimes hope is all we have left. We'll keep hoping with you.

YougreatPamplemousse · 23/09/2011 21:23

Cupoftea - I think you are amazing parent, being positive about her is a good thing. She is here now and going home with you tomorrow morning which is more than you thought last week. Use your positive thinking to enjoy your time with her and make memories to last.

It is also okay to be scared of the unknown too.

Sending you all lots of positive thoughts. Enjoy tomorrow, taking her home, spending time with her and her sisters, show her off with all the amazing positivity you have shown us, people's reactions will be led by your example.

mumatron · 23/09/2011 21:25

Oh cupof :(

You and your beautiful girl are in my thoughts tonight.

Keep fighting bea, you darling little girl.

XX

Voidka · 23/09/2011 21:27

Oh Cupoftea I am sorry that you ahve had more bad news. Beatrice looks like a fighter and I hope she will prove everyone wrong.

You are a wonderful mother and all three of your DDs are lucky to have you.

Take care of yourself.

AfternoonsandCoffeespoons · 23/09/2011 21:43

Oh my darling, I am so sorry. Life is so unfair. Please don't ever think you are anything less than a great mother, who loves her children.

Wishing you strength and peace at such a difficult time.

((hugs)))

DecapitatedLegoman · 23/09/2011 21:58

So sorry to hear this latest news :(. Cupoftea you have shown such strength and positivity, hang on in there. You're all in my thoughts.

Conundrumish · 23/09/2011 22:10

Oh Cupoftea Sad - I have been checking for updates and am so sorry to see this. You were not stupid to be positive - she will have been feeding from your positivity like all babies do and it will have done her the world of good.

I wish you well in these days as you take her home, but like everyone else, she looks like a fighter to me. I don't want to give you false hope and it can be annoying when people don't accept the seriousness of a situation, so I have pondered whether to say this or not, but babies can astound doctors sometimes. My DN's diagnosis that she would die, then that she would not live long, then that she would live but would not be able bodied and would not walk. As it is she is fine and runs for her county. I don't know how damaged Beatrice's brain is, but it is a remarkable thing have recently read part of this amazing book. A friend of a friend with awful brain damage following a heart attach in early 40s has just gone back to work in his dream job after he was given little hope.

I hope your next few days with your beautiful girls all at home goes well. I'll be thinking of you.

LoveInAColdClimate · 23/09/2011 22:23

I am so desperately sorry to hear this latest news, cupoftea. My thoughts are with you.

bilblio · 23/09/2011 22:25

CupofTea, so sorry to see the latest news. I totally agree with what others say, you haven't been stupid to be positive. You want some nice memories of this time and being negative isn't going to create nice memories.

Like pinkpanettone I don't want to give you false hope, but I work with people with learning disabilities and many of them have constantly astounded people throughout their lives.

Keep strong, keep positive and make sure you take care of yourself too. x

Please create an account

To comment on this thread you need to create a Mumsnet account.

Join Mumsnet Log In
This thread is not accepting new messages.