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.

I know it doesn't feel like it right now, but for all of us here you are the most courageous and amazing mum, and Beatrice is a great fighter. I'm sending you the warmest and sincerest wishes for your return home. xx

So sad to read this Cup. Hope you get to create some beautiful memories with your very special little girl. Thinking of you and your family x

Dear little Bea,

How your Mummy loves you. I know you feel it too. Please take care of her and stay strong for as long as you can. When it's time to say goodbye, make sure your Mummy is surrounded by love.

If love was wings, you'd fly little one. You'd fly right into your Mummy's arms and she'd never let you go.

Pinot x

She is absolutely gorgeous (just had a nosey on your pics) and looks really alert. Hope everything has gone well as can be for you today and you fineally have your little girl home, thinking of you xxxx

Cupoftea - there are some wonderful stories full of hope on here. I hope you get to take her home today .

BobLob - that is amazing and wonderful! :)

Riven - I don't know if you've ever said - was it a mismanagement issue, did you get compensation for your DD? Hope she is ok, btw. I miss your updates!

Another tale here.....my eldest ds was born when I was just 19 he was an emergency section after a prolonged induced labour- he'd stopped breathing.

They did the cs and ds was whisked away to scbu he was on a ventilator and dh was told he wasnt going to make it through the next 12 hours, he was all battered and bruised the forceps had cut dangerously near to his eye and his head was massive a cone head swollen like wobbling jelly .....Dh was told that he had extensive brain damage due to the trauma and the fact hed stopped breathing.

The next day I heard the Dr say he would have cerebral palsy he used a word I now know that means quadriplegic but I was 19 and naive.

We had many ups and downs the hospital admitted liability and we were ready for a lengthy court battle .....we took our baby home after brain scans and a time in scbu believing our future to be not the one we'd planned for.........we didnt need a court battle ......we didnt need special equipment...........and 18 years on our lovely ds1 is studying law and aside from a scar near his eye (that has affected his tear duct but he wont have it treated) and a bald mark on his head he is fine.

I wish somehow I could travel back in time and see my 19 year old self and tell her things arent always what they seem and not to waste time worrying over what cant be changed - but Cupsoftesplease I can tap your shoulder and say I dont know where Beas journey will take you all but each step is filled with love x.

Cupoftea, I hope you are enjoying many cuddles with your beautiful girls and enjoying your precious time together. Be positive when you can, it's only natural to take any poditive news as the best news in the world because that is what you and everyone else wants x

Just seen this. Thinking of you all. X

Sending lots of love and hoping little B continues to amaze us all with her strength xx

Thinking of you all x

another big hug right here xx

glad you can take bea home and love her xx

Cupofteaplease, I cannot start to imagine the emotional roller coaster you have been on this last week. Enjoy your time with Beatrice (what a beautiful name) and treasure every moment.
Thinking of you.

Another very un-MN like hug for you and your girls x

I am sorry to har your latest update but beatice sounds like a fighter and I am sure that however long she is with you that she knows she is loved and adored by her mummy, daddy and her sisters, and everyone else who knows her.

I really hope miracles do happen and that your litt;e beatrice becomes one of those miracle babies.

Look after yourself.

I hope you draw some comfort from all the people who are holding you, Bea and the rest of your family in their thoughts. Wishing you the chance to make many many happy memories. xx

I'm so sorry cupoftea my thoughts are with you and your family xx

Thanks again for all the messages. We finally have Beatrice home, and would you know it, she passed her newborn hearing test they performed before we left. So at least we can take comfort in the fact that she can hear us. I will continue to talk and sing to her, as it seems the natural thing to do.

We stayed at the hospital last night on SCBU and took care of her through the night- it gave me an idea of how scary this is going to be out in the real wide world without the experts around to monitor her 24/7. I didn't sleep a wink, I just kept checking she was still breathing (not that she has had any problems with her breathing, but you know how it is with any newborn...)

Being at home is stressful. The house needed a good clean when we got back as other people had been staying here with the girls since I went into hospital last Thursday and they had obviously let things get a bit messy (understandably). I've not done it all, haven't got the energy, but of course I am petrified taking her from the hot, sterile SCBU to our house which can be cold and dusty at times (although I will be super- organised at keeping on top of the dust).

My sister and her children came round to meet her, that was nice, but I cried again. It all seems so surreal.

Oh lovely - try and keep it as real as you can, you are in a bit of a bubble of not knowing what is going to happen at the moment, so assume the best and live life as normally as you can. Treat her as you would any newborn baby (with added caveats that the hospital may have given you of course) - and I hope hope hope that she overcomes her extraordinary start in life and carries on defying medical opinion.

Can you get a heater for the room she is in?

Love and hugs to you all xxx

How wonderful that she passed her hearing test. I am sure that singing to her will give you great comfort.

I shouldn't worry about the state of your house. Just make the most of your time as a family.

Yes don't worry about the house,Cupoftea,just enjoy her
She is so adorable,so gorgeous!
Even though it's nerve wracking..I bet it's so lovely to have her home

Love to you all

how lovely that you have her home. agree with Thumbwitch - try to treat her as any other newborn (obviously with the same caveat re: doc's advise).

fantastic that she passed her hearing test

don't worry too much about the housework - certainly don't exhaust your self with it. just sit and talk and sing to Beatrice and your other lovely girls.

She's home

The fact she can hear you all is wonderful: she'll hear the love as well as feel it.

Housework? Stuff it. Spend the time with your gorgeous daughters. That is far more important.

So pleased to hear you have brought your precious little girl home. xxxxxxx