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:
ChippingIn · 21/09/2011 18:26

Cupoftea - I hope they can sort it out soon so that you & they know what you are dealing with. It is much better news than you had originally, but it's still scary isn't it :( We will all be with you all of the way. Lots & lots of positive thoughts can only help :) Much love x

notsofastmrbond · 21/09/2011 18:37

Oh wow, absolutely fantastic news. Sending love and strength to all of you xxx

bubby64 · 21/09/2011 18:56

Oh cupoftea, so sorry Sad.
When my twin DDs were born very prem, we were told they would not survive, in the end they were with us for 1 and 3 days respectivley. I treasure the memories of the short time we spent with them forever.
Our DSs were 6 at the time, and wanted to meet their sisters, and were told that the girls were very poorly and would be going to live in heaven, as they had not "cooked" properly in mummys tummy, and I'm so glad I did, as they still talk of their "angel sisters" now.
I had a lot of help from a specialist trained berevement midwife and the special care team, and also councilling afterwards, which really did help.

sassyTHEFIRST · 21/09/2011 18:59

bubbly, read the thread - things are so much better for the tea family now.

And CUpof tea, what wonderful, miraculous news. I found this thread wondering what had become of you all during the last few days and saw THIS!

Wow. Full of tears here. Keep fighting little Beatrice Primrose, your parents and sisters love you very much x

bubby64 · 21/09/2011 19:03

YES!! wow, sorry, somehow missed the page with the great news, sorry for that Cupoftea, you and yours must be over the moon! :-D

going · 21/09/2011 19:05

Cupoftea, so pleased to hear you had some positive news. x

scarlettsmummy2 · 21/09/2011 19:18

Beatrice is really gorgeous! she looks so alert in your photo. Best wishes x

deleting · 21/09/2011 21:39

Can't believe it! Was reading the thread from the beginning in tears and looking at the pictures of her and thinking she looks so bright and alert and what a terrible, devastating thing to happen and THEY GOT IT WRONG!! I mean, you hope against hope that someone will come along and say those words, but at the back of your mind you know it's not going to happen, but it has for you. That is amazing. Made my day x

Annunziata · 21/09/2011 21:58

Oh my goodness, that is absolutely wonderful! Almost unbelievable! Much love and good wishes xx

triskaidekaphile · 21/09/2011 22:33

Oh cupoftea, how amazing and wonderful. Everything crossed for gorgeous Beatrice carrying on getting stronger and stronger. Take very good care of yourself.

cjbk1 · 21/09/2011 22:41

just wanted to send u all loads of love so glad to hear happier news Grin

TheEarlOfDoncaster1963 · 21/09/2011 22:45

Amazing news - tears here! Wishing you all the best of luck and happiness for the weeks, months, YEARS to come Smile

ExitPursuedByaBear · 22/09/2011 10:47

Bloody hell that is BRILLIANT news. Hope she continues to grow in strength.

ExitPursuedByaBear · 22/09/2011 10:48

Ooooh just looked at your photos. What lovely girls, all three of them.

YohoAhoy · 22/09/2011 10:53

Oh gosh. I have been reading your thread, wanting to post, and today I clicked wanting to add my thoughts.

I have just read your update and burst into tears. Complete visceral reaction. :)

I am, so, so pleased for you, and send many, many good wishes to you, your family, and the fabulous Bea.
xx

rubyrubyruby · 22/09/2011 10:56

This reply has been deleted

Message withdrawn at poster's request.

BerryLellow · 23/09/2011 09:36

Wonderful, wonderful news. I'm genuinely thrilled for you and happy to hear some good news. Wishing your family much love and strength....well done Bea, keep going!

:)

snigger · 23/09/2011 11:18

Late entry to the thread but just wanted to post courageous thoughts and strength to you and your lovely wee family. Keep on, Bea.

Spamspamspam · 23/09/2011 13:11

Cup another one who is absolutely delighted for you, I have been reading this thread with such a heavy heart.

Beatrice and your other girls are stunning, good luck for a happy future XXX

pruney1977 · 23/09/2011 19:07

Fan-flippin-tastic news!!!!
I snuck a peek at your pics, Bea is a beaut as are your other children. Such mesmorising eyes.
I'm so, so glad that you've had some positive news. DH has just explained to the dog that I'm happy because I was worried about your baby as I have been telling him about little Beatrice.
Fingers crossed for the next few days and weeks x

AtYourCervix · 23/09/2011 19:18

Good Lord! I was away last week so missed the beginning of this. I read the first few pages with such sadnes for you but my god, what a turnaround.
Your girls are all very beautiful. Sending thoughts, prayers, wishes and everything else good your family's way.

travellingwilbury · 23/09/2011 19:19

cupoftea I hope you have had a good couple of days with Beatrice and she is doing well .

Just want you to know we are all still thinking of you , and hopefully that infection of yours is getting better .

Original poster
cupofteaplease · 23/09/2011 20:52

I can't believe I am coming back to this thread when I had hoped so much to be starting a new one in Premature Births, or Special Needs.

We met with the consultant again today and the results of her mri scan are devestating. They show that her brain is severely under developed. We are still waiting for a 'name' for her condition.

But basically, there is nothing more we can do for her in hospital, so we are taking her home in the morning to make some memories with her sisters and allow family to meet her.

I can't believe this. She has done so well and continues to move more each day. She takes a bottle in between tube feeds. I can't believe she isn't going to make it.

Im so scared of being alone when she passes away. Please God, they got the genetic thing wrong, please be wrong about this too.

OP posts:
deemented · 23/09/2011 20:55

Oh cupoftea - i am so so sorry.

My words seem futile right now, but please know that you, Beatrice and your family are in my thoughts.

silverfrog · 23/09/2011 20:57

oh cupoftea, I wish you had had better news.

do start a thread in SN, or in premature births - wherever you like really - I am sure there will be people who have been on the journey you are going thorugh.

this must be so hard for you. but take heart form the fact that Beatrice has been confounding everyone so far - she looks like a girl who means business to me, and her progress so far highlights this.

take some time with family to try to absorb this, and to make those precious memories. for now, she is doing the important thigns - she is moving more and more, and she is feeding. that is fantastic progress.

I hope you have a peaceful weekend with all your girls.

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.
Swipe left for the next trending thread