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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:
lovemyangels · 23/09/2011 22:28

So very sorry x

Fuzzywood · 23/09/2011 22:32

So sorry to hear the latest update, you're all in our thoughts x

Freezingmyarseoff · 23/09/2011 22:32

So very sorry to hear your latest update. x

Sidge · 23/09/2011 22:33

Oh darling cupoftea, I'm so very sorry to hear that things aren't as positive as you'd hoped.

I don't want to get your hopes up as I know it's not really the same, but my DD2 has a genetic disorder and after birth had HIE - hypoxic ischaemic encephalopathy (lack of oxygen to the brain causing brain damage). The very lovely and very clever doctors did amazing things for her but essentially sent us home saying 'we don't know how long she'll live and she'll never walk or talk but take her home and enjoy her'.

She's now 7.5 and at mainstream school with support, walking and talking and despite needing a lot of help and support generally is a wonderful little girl. Children can be truly incredible and continually astound and confound the professionals!

My advice is DO be positive - take joy in every moment and enjoy her for what she is, not what she should be or could be. Create some wonderful memories and cherish every day with beautiful Beatrice.

ThePosieParker · 23/09/2011 22:37

Oh gosh, focus on making memories and keep your heart filled with hope.

xxx

Scheherezade · 23/09/2011 22:37

Oh no cupoftea, my thoughts are with you and your family.

xxxx

NoMoreWasabi · 23/09/2011 22:38

Oh cupoftea what a rollercoaster you're on. A big kiss for Beatrice.

ExitPursuedByaBear · 23/09/2011 22:43

So sorry to read your update - but as pinkpanetonne says, many people have astounded the doctors. Those days of hope you have had will never be lost. And we all need hope. So glad you are taking her home at the weekend, and I wish you and your family all the love and peace in the world.

WhoresHairKnickers · 23/09/2011 22:49

Praying for your beautiful Daughter to find more strength with each minute. For you too cupoftea, for you all.x

winnybella · 23/09/2011 22:49

I'm so sorry that you had bad news Sad. I have to say, as others have, that she looks like a fighter and also on the photo on your profile, she looks so alert that it's hard to reconcile it with the results of the MRI.
Wishing you and your family all the best xxx

MonsterBookOfTysons · 23/09/2011 22:51

Cup of tea, I am so sorry :(

galletti · 23/09/2011 22:58

Lots of love to you all. xx

UrsulaBuffayTheVampireSlayer · 23/09/2011 23:00

Oh CoT I'm sorry. We're all still here for you all x

MustControlFistOfDeath · 23/09/2011 23:01

Oh cupoftea,big hugs to all of you x

Hassled · 23/09/2011 23:03

I read this and I didn't know what to say - I still don't. But you've been in my thoughts, and those of so many of us.

FrauLindor · 23/09/2011 23:17

Thinking of you and your family, cupoftea and hoping and praying that Beatrice surprises the doctors once again.

scampbeast · 23/09/2011 23:32

Hope I am not giving false hope but I work with young adults who have special needs. So many of the parents were told that their child would not live long, if at all, yet they are now adults. They are all loved and bring joy to the life of those they touch. One girl was adopted and her new parents told she would be lucky to live till her 5th birthday, she is 25 this year and they are so glad for each extra year they have with her.

Imnotaslimjim · 23/09/2011 23:38

I've just read this thread from start to finish and feel like I've been on the roller coaster with you

My heart aches for you. You're daughter is beautiful, and does look like a fighter. I don't pray, but I do hope that maybe, like some of the miracle stories you're hearing here, she stays with you for a while yet

schroedingersdodo · 23/09/2011 23:38

I have nothing to add, just wanted to say Bea's eyes are so expressive and alive, and wish you all lots of strength to face whatever comes your way...

issynoko · 23/09/2011 23:52

Also nothing to say but to send my good thoughts to you and your children. XXX

Clary · 23/09/2011 23:57

So sorry about this latest update cupoftea.

Praying and hoping for you all. Please have a special weekend together and may it last and last. Baby Bea so lovely.

AitchTwoOh · 24/09/2011 00:06

very sorry to read this latest update, cupof. make lovely memories, she is so adorable and you all clearly adore her.

VelvetSnow · 24/09/2011 00:08

lots of hugs to little Bea.

Thinking of you all xx

working9while5 · 24/09/2011 00:20

Oh how devastating for you all. I can't believe it. Have you been given any idea how long she will be with you? It must be so terrifying, I think I would need to know but wouldn't want to know though I can't say obviously, it must be so hard to take it seriously and believe it when it has been so down and then so up and now down again. There's nothing to say except how very sorry I am and how terrible this is. None of you deserve this, it is so unfair.

triskaidekaphile · 24/09/2011 00:36

Oh no.:( I can't imagine how awful it feels to yoyo from such pain to euphoric hope to pain again like this. I am so sorry and I so hope that Beatrice will somehow defy the odds. I think she is being showered with love and that is the most important thing in the world for her. It's absolutely normal to be terrified in this situation, I'm sure. Thinking of you all. xxxxxx

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