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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:
PercyPigPie · 19/09/2011 23:01

I am so sorry you are going through this heartbreaking time Cupoftea. Thinking of you, your beautiful baby and family at this time xx

Original poster
cupofteaplease · 19/09/2011 23:04

We didn't get the test results back we were expecting today and the nurse seemed negative about her feeding. I've left her this evening on a downer.

Girls came to visit again and gave her so many kisses and a balloon. They keep asking when she is coming home.

My hormones have crashed and Im feeling really low, plus my c section scar is infected so that hurts, nothing in comparison with the bigger picture.

I just keep praying they've got this wrong, so terribly wrong, and my little girl will get better. I hate the consultant for giving us the news on Friday and disappearing.

OP posts:
UrsulaWoleffay · 19/09/2011 23:07

So sorry for what you are going through love, of course you are feeling terrible it is only natural. Please give some kindness to yourself as well.

Congratulations on the birth of Beatrice x

walkingonthemoon · 19/09/2011 23:07

Will be saying a prayer for you all tonight. x

saoirse86 · 19/09/2011 23:08

I saw your thread on the pregnancy board and have been thinking about you. I'm so sorry to hear that you've had such bad news. I hope you get to enjoy your time with her and you get some more positive news soon.

I'm thinking of you all. Xx

PrisonerZero · 19/09/2011 23:10

I have no words to comfort you, I don't know what to say.

I am so sorry, truly sorry.

Your daughter has a beautiful name, I am glad that she has met her big sisters. When I was a young child, my mother had a baby. My sister and I don't really remember too much as we were only 6 and 4 but he died when he was a couple of weeks old - we have no photos of us with him and wish we had.

I am thinking of you all and wishing for a miracle for you.

Original poster
cupofteaplease · 19/09/2011 23:18

I have tried to add a couple of photos. Please can someone check if they have uploaded? Thanks.

OP posts:
TeamEdward · 19/09/2011 23:19

This reply has been deleted

Message withdrawn at poster's request.

MadameDefarge · 19/09/2011 23:25

all my thoughts are with you. one of my brothers was also born with Edwards syndrome, and was with us for three weeks. He is as real to us now, 40 years on, as he was then.

xx

nodrog · 19/09/2011 23:27

cupoftea, I don't think you have a public profile. x
Beatrice Primrose, what a lovely name for a beautiful lady. x

Neverlandpirate · 19/09/2011 23:34

Your beautiful wee daughter has a truly beautiful name to match.

I am praying for you all tonight- I hope you do not mind- (if prayers are not want you want you don't have to read the next bit of my post..I am just going to write next what I will specifically be praying about tonight).

I pray that little Beatrice will be surrounded with love, and it is a blessing for her that she has so many people who love her, and have been touched by her precious life for however long she gets to stay here.
I pray that your wound will not hurt as much, and that the infection clears, so that you are able to give yourself fully to watching and caring for Beatrice without physical pain and discomfort getting in your way.
I pray for your other DD's that you and your dP will be given the right words to say to them to help them understand.
I pray for your dP- it must be hard for him to leave the hospital and return to your other dd's who due to their age cannot comprehend what is happening, and are just excited about little Beatrice's arrival.

But most of all, I pray for strenght for you all to face the days ahead. And of course for healing- whether it is for this life or the next.

I hope tonight that you can feel that there are people all over the country/Internet..that are thinking about you, and wanting to wrap you up in a big hug.

Original poster
cupofteaplease · 19/09/2011 23:35

I think it should be public now.

MadameDefarge, did your brother come home from hospital?

OP posts:
UrsulaWoleffay · 19/09/2011 23:35

Oh there she is! What a sweetheart.

mycatsaysach · 19/09/2011 23:37

gorgeous pictures - so beautiful xx big hug

Neverlandpirate · 19/09/2011 23:37

What a beautiful picture! Beatrice has the most beautiful eyes.

UrsulaWoleffay · 19/09/2011 23:37

Lovely photos with her sisters too, just beautiful. I do wish you all well x

PublicHair · 19/09/2011 23:37

oh god bless her (and all of you) she's a real sweetheart.

Clary · 19/09/2011 23:37

cupoftea just seen this, wanted to post to say congratulations on the birth of your lovely DD. I think her name is just so pretty.

Your posts about her and especially your other DDs have moved me to tears, and I am sure many others too. I hope your precious time with her will bring you joy and I am so sad and sorry for what has happened.

So much support here in whatever way you need. Sending you hugs and prayers. xx

trumpton · 19/09/2011 23:38

Oh she is so beautiful . Your 3 girls are lovely. Thinking of you all and saying a prayer. I have no words to express how I feel. Thank you so much for sharing your wonderful photos , the love shines out from them. X

Demiwave · 19/09/2011 23:39

Cupoftea, she is absolutely beautiful (as are your two older dds). DH and I are thinking of you all. I hope you can cherish every second with baby Beatrice. X

Moominsarescary · 19/09/2011 23:39

She's just beautiful x

Clary · 19/09/2011 23:39

Just seen the beautiful pictures, how lovely they all look together. What precious memories.

Original poster
cupofteaplease · 19/09/2011 23:40

Thanks so much Neverlandpirate, what kind words. There can't be enough prayers at the moment for Beatrice, and all the other babies in SCBU all over the country. It is such a sad place to be- 2 steps forward and 3 steps back.

OP posts:
fivegomadindorset · 19/09/2011 23:40

Beautiful photos cupoftea all three of your girls are georgeous. When you told us her name I smiled, it is such a sunshiney name. Thoughts and prayers with you and your family.

FrauLindor · 19/09/2011 23:42

She is adorable, Cupofteaplease. And such a beautiful name.

Much love to you and yours.

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