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.

phoning that should have been, not sure phonga breastfeeding counsellor would help .

Gorgeous scrumptious baby in her dress .

If you can get hold of a breast pump (ideally a hospital grade double electric pump) then you could give Bea whatever you express - will probably be small amounts at first but will build up.

0300 100 0212 National Breastfeeding helpline.
0300 330 0771 NCT breastfeeding helpline
0845 120 2918 La Leche League

You could try calling one of the bf helplines and they will be able to give you advice to fit your situation.

Thinking and praying for you and your lovely family x

Thanks for the advice.

No I've put her to the breast but she can't suckle. It's hard enough getting her bottle in her mouth as she clamps her jaw shut (her arthrogryposis again ).

I will speak to HV about expressing then, might be worth a go.

Definitely worth a go, cupoftea. Even if they say don't bother. Every little helps! (If only BM were available in Tesco, hey! )

Gorgeous little dress. Doesn't she look fine!

No idea about Bfeeding but it might be good for you, if you can express even a little. Psychologically, to feel that you have tried everything possible to help Bea. As long as you see it as an attempt, and don't stress about it if it doesn't stress you.

CoT
This thread is nearing the 1000 post limit. Would you like to start another one? Or shall we ask MNHQ to remove the limit?

Cupoftea- look up and try to find your nearest breast milk bank. That way little Bea can be tube fed breast milk even if you don't have enough. I agree to try and express and see how you get on.

Good point MmeL - CupofTea - perhaps you would like to start a new thread with a different title? and then link it back to here.
Best if you start it, if you want to, because those of us (like me) who have the OP's posts highlighted in a lovely colour can see your updates much more quickly. :)

CupofTea, I have a double hospital grade electric breast pump which I have finished with. It's been well used but still works and I'd be more than happy to send it to you if you'd like it. If you would PM your address, I can pop it in the post on Tuesday (at work monday sadly).

Please do let me know. Hope you are OK today. Your girls look lovely and B looks especially sweet in her dress.

Thinking of you.

I don't want to say anything that goes against what you've been advised, cupoftea, but I think the mother's milk has a special value that can't be measured. Even if it's only a tiny bit, and just an addition to her current food, it's an energetic exchange. Even if she can't suckle, I would think holding her to the breast would be comforting.

CUP what a precious little sweetheart you have there.

BM can only be a good thing, even if it means a minimum amount is getting to your precious baby, it might help you in the long run knowing you gave her what you could.

Don't listen to doctor death, Beatrice has shown she certainly doesn't . 2wks old and already ignoring the grown ups and doing her own thing.

WELL DONE BABY BEATRICE

Copoftea- she is certainly a lovely baby.

I've just seen your pictures, she is beautiful :) May be worth asking the community nurse about a breast pump, ours had special ones they could loan out.

cup - just wanted to say good luck for Monday's appt. will be sending positive vibes your way all day.

Fingers crossed for monday x

another one wishing good luck for monday x x x

You are all in our prayers, especially for Monday's appointment

Hope you have a wonderful Sunday cuddled up in the warmth

thinking of you x

I think after we have been to the hospital tomorrow I will start a new thread in Special Needs. I need to face Beatrice's future in a positive way, and moving away from the Bereavement topic may be a good start.

I was listening to Radio 2 this morning and they played How Great Thou Art, which dh and I chose for our wedding day. I hope He is that great, and has great things in store for Beatrice. I also hope He can give me a bit more strength should I need it. I thought losing my Dad 3 tears ago was my lowest ebb, but these 2 weeks have been pretty darn painful.

If Beatrice can't suckle, what about using a spoon or pippet for getting the milk into her? Plenty of prem babies can't suckle - what do they use?

Cup - what a great and positive plan to start Bea a thread somewhere that is not bereavement. The strength will come and the pain will ease, you have alot to deal with not just emotionally, you have to physically heal from the c-section too, it is only 2 weeks since you had major surgery. We will keep you all in our prayers.

I think thats a very good positive thing to do. Hopefully the appointment will give you a better idea of whats happening. see you at sn board

Mothercare sell pipettes here

How Great Thou Art was going through my head last night as I went to sleep. It has some amazing words