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.

Happy 2 week birthday Bea - how gorgeous in her dress!

I've just read this thread, and I haven't really got any words except swear ones. What a terribly unfair and undeserved thing to happen to you and your family.

I wish you all the best for the time you have together and will pray for you.

Aw two weeks, already making little miracles.

God bless

Just found this thread and wanted to add my best wishes for the weekend and for Monday. What a beautiful little girl.

My youngest brother James was born with Edward's syndrome, I was just about old enough (9) to remember it all - heartbreaking situation. Look after yourself, you are in my thoughts and prayers.

I love good mw's. Sounds like you got just the one you needed today.

Good luck for Monday. Remember, if they still don't have a name for the condition Bea has then they cannot accurately give her a prognosis, so try to take what they say with a pinch of salt if you can. Easier said than done, I know. Thinking of you.

cjbk1 to see photos you just need to click on her name and it will take you to her profile with a link to photos.

She looks gorgeous Cupof.

Just wanted to add my thoughts and prayers to this thread. Thelennox family is thinking of the cupofteaplease family x

Cupof - lovely new photos :)

If that's you in the photo I'm you look very very young (well you are compared to some of us old trouts!! LOL but you look even younger than your age! - Lucky thing!!).

She's a little fighter - I'm expecting big things of her :)

I agree that if you don't want Dr Death there or involved with her care then you should ask for a different consultant - the only thing to bear in mind is that their 'coolness' & less than brilliant bedside manner are often offset with incredible intelligence and an intellectual approach to a good result. What I'm trying to say is she might be a cold, heartless bitch but she maybe the best consultant in the field - it's sometimes a trade off :/

Don't go expecting bad news on Monday! She's proven them wrong so far... so who knows.

Fingers crossed & lots of love
xxx

What an absolutely gorgeous baby girl. I'm so sorry for the roller coaster you and your family are on. Best wishes for Monday.

Ive been reading this for a few days without saying anything, and I keep crying, its just so unfair. DD2 was 8 weeks preemie and I still get teared up really easily at anything to do with very tiny babies.

She is gorgeous, and I hope you dont mind I looked at the pictures and you can see her coming on over the two weeks, she looks stronger, and so alert. Its been lovely to see all the support on here and I hope that knowing she has touched so many hearts already helps keep you strong.

I dont pray much, but I will on Monday.
xx

Beatrice looks lovely in her dress & good luck for Monday x

Lots of love to you and yours cupoftea. Beatrice looks gorgeous and scrummy in her pretty dress xx

ChippinIn re the paed - I've also heard it said that being a paediatrician affects you psychologically so much that you often have to detach

Beatrice looks beautiful in her title dress! And I thought the other photo must have been of third older sister, not cupoftea! She even makes us not-so-old trouts look ancient!

Best of luck to your lovely family, my thoughts are with you.

Best wishes xx

You're in my thoughts.

Thinking of you and your family and just wanted to send you love and best wishes. xx

I don't know what to say cup. :(

I'm so sorry you didn't get better news, but I am hoping that changes at your appointment.

Beatrice is so beautiful, as are you and both your older girls. Stunning family!

It goes without saying, but I am thinking of you, and will continue to think of you, all of you.

With love from my family to yours. x

Just wanted to wish you all the best for Monday cupoftea. Bea looks beautiful if her dress! I hope you all enjoyed her "2-week birthday". Onwards and upwards sweetheart.

Can I please say that whattodoo, your post made me laugh so hard! However, I'm afraid my forks are pretty mediocre.

I wonder if anyone can offer some practical advice to a useless mum- when I was doing kangaroo care/skin to skin with Beatrice last night I realised I began leaking milk. Only a couple of little drops but it's the first I've seen. I had thought about BF for the first few weeks, before she was born, if we could (I never managed it with both older girls.) Anyway, when she was born they said not to worry about it, then as she began to tube feed I suggested expressing, if I could, but again I was told not to worry as the formula is obviously doing the job. However, having seen some milk last night, I feel it's a shame to waste it, if that makes sense.

So, can anyone recommend the best way to increase my milk? Or at 15 days is it too late? I am not expecting to be able to replace her formula with EBM, but would like to give her a little if I can.

I have been following this thread and couldn't find the words to post.

On hearing about your meeting on Monday I just had to say despite what the doctors say or do Beatrice will have her whole life.
It may be shorter than a mummy would wish for but she has it all, every second, every minute, every hour, her sister are big sisters, her grandma a grandma etc. I life filled with love is worth living.

In the face of sombre health proffessionals this has kept me going where my DS2 is concerned. Dr Death can stuff that in her hat and eat it.

Keep strong and remember to eat. xxx

oh cupoftea, another lurker here, i CANNOT believe they told you not to bother expressing, yes the formula is just fine but your bmilk would be good as well! maybe the hospital just didnt want to increase your stress levels?

anyway no its not too late, i would suggest doing a shout out for tiktok and she could advise on expressing, you obviously have some milk and if its what you want to do then go for it!

your family are gorgeous, i am sending lots of love and strength xxx

scbu can give you a pump for your milk, phone and ask them then whatever you get she can have through her tube. Consider though that it maybe one more thing to many it is time consuming expressing.
If you are leaking rubbing it on her lips with your fingfer means it is not wasted.

If the hospital don't help, what about phong a breastfeeding helpline?
.

I think that is what they meant, don't stress myself out with trying to express when time could be short. I have been putting milk onto her lips when I get a drop, just wondered if I could 'make' more.

Agree with the previous posters that if you are leaking milk you should try to give her what you have, and try expressing as well. Formula is fine but BM can only be beneficial to little Bea. Is she at all able to suckle? if you try putting her on the boob, does she know what to do at all? worth a go and if it doesn't work (because it is hard work for them) then express.
Definitely not too late though - your bod has told you that! Good luck and I also agree that Tiktok may be able to offer more help - if you PM her, she should be able to find the thread and post (or just PM you back of course).

Good luck! XX