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Original poster

My baby died after 6 days in NICU, not coping.

227 replies

greengoose · 07/05/2012 14:06

I don't know whether it'll help to write this.
My beautiful baby girl was born at 32plus 1 weeks by ecc then transferred to Great Ormond Street straight after birth. An operation that we thought would go well didn't, and she struggled and fought for five days before they turned off the machines and we held her while she died.
We knew during the pregnancy that she would need an op, that's why we were referred to GOSH. We were only meant to be in London for routine scan though, and they spotted she had hydrops and reduced fluids. We stayed extra day to see other consultant, and they scanned again, she was worse, so they scheduled for next day. My partner drove back home to drop of youngest DS who was with us and pick up bags etc, then during the day I got very ill with Mirror Syndrome (like v severe preeclamsia), and my partner just made it back two minutes before op. He got to see our baby with her eyes open, which I never did. I'm so glad he got back. He went with her to GOSH, and I had to stay in UCH while they tried to stabilise me.
They operated that night. I thought it would be ok. My partner ran back from GOSH to UCH to let me know it had gone wrong, and she was critical. He then ran back to be with her.
The next day they (accidentally) discharged me, and I was with her from then on as much as possible. NICU is a parents hell. She was so ill. The staff were amazing, but there was nothing they could do in the end.
On the last night her heart started to fail, and the decision was made to stop. They cut all her wires and tubes and handed her to me while she died. I want her back now. This isn't right.
My milk came in the next morning. I had to bind my breasts and we had to register her birth and death that morning. Then we came home. She has been cremated now, and my milk has gone. It's been three weeks, but it could have been yesterday. I don't know how to get through this. I want her back.

OP posts:
BreastmilkDoesAFabLatte · 08/05/2012 18:12

I am so sorry. So, so sorry.

Northernlurker · 08/05/2012 18:23

Oh well done for doing the staff nomination! That must be have been so hard (and my computer has also got a bit soggy just reading it)

TheHouseOnTheCorner · 08/05/2012 18:23

Ah Greengoose what a lovely thing to do....he will appreciate even the nomination from you at such a time....that will mean more than the prize to a nurse like that. I hope you manage some sleep tonight. Bless you all. xxx

aurorastargazer · 08/05/2012 19:17

that was loely greengoose Smile

aurorastargazer · 08/05/2012 19:18

lovely

cupofteaplease · 08/05/2012 19:41

I'm so sorry to read your terribly sad news about darling Merryn. I just wanted to say that I truly believe a baby knows her mother's love, even if she can't be with you, or understand what is going on. I'm sure she knew all along how much you adored her.

Take your time sorting out her things, there's no hurry is there? It was lovely of you to nominate her nurse in NICU. Thinking of you x

ej23 · 08/05/2012 21:25

Goodness, what a lovely, generous thing to do- and at such a difficult time. He will be deeply touched. You are truly inspiring. xx

VivaLeBeaver · 08/05/2012 21:37

Greengoose, that is a lovely thing to do. I got nominated for an award by a couple who I looked after when their baby died. I was so touched that in the midst of their grief they found the time and energy to do that.

Original poster
greengoose · 08/05/2012 22:04

Vivalabeaver, are you a nurse then? I can't quite get my head around how anyone can do that sort of job, especially in intensivecare, it would break my heart daily I think, but I'm so glad people do. We were blown away by the effort put into trying to save Merryn.... We never knew. We are so lucky to live in a country where this is possible and where we value life, even in such little ones.

I have been offered a 'woolyhug' blanket, made by mumsneters for our family. I am once again staggered by the kindness of strangers. Merryn is teaching me well about this side of people, I have a new view of humanity thanks to her. What a gift.

OP posts:
Northernlurker · 08/05/2012 22:11

Smile Little lives can make huge impacts.

maples · 08/05/2012 22:31

This reply has been deleted

Message withdrawn at poster's request.

VivaLeBeaver · 08/05/2012 22:51

Greengoose, I'm not a nurse but a midwife. Can be a sad job some days though.

rathlin · 08/05/2012 22:55

Greengoose, I am very sorry to hear about your little girl. Its early days for you yet and unfortunately I have been through something similar and I can say that there will be brighter days ahead.

I spent 6 weeks in NICU with my daughter Alice and it was the best and the worst of places. I was also very ill with pre-eclampsia. Alice died in my arms and it is so incredibly hard that its almost surreal. 6mths later I was pregnant again and was blessed with a boy now aged 3. He helps a lot.

I know you said you aren't religious but one thing my priest said to me after Alice died was that time is not a great healer, it just separates you further from the pain. This is so true. I will miss my girl forever but in time you learn to carry on living because everything and everyone else is carrying on. You will be amazed at your strength. Be easy on yourself.

We spent a lot of time talking to the psychologist attached to the neonatal unit and also went to a few Sands meetings. Sharing experiences and talking things out helps a bit. Best wishes to you and your family.

QOD · 09/05/2012 06:49

I'm so sorry xx

Original poster
greengoose · 09/05/2012 08:08

Rathlin, I'm so sorry little Alice died. It's kind of your to tell me about her.

I don't know how you managed 6weeks of NICU... You must be very strong. I remember the exhaustion of trying to be there day and night and being very ill myself... I'm not sure I could have managed like that for much longer...

I'm glad things have become a little easier over time. I'm sure your little boy brightens your world every day.... I know my boys do!

OP posts:
sashh · 09/05/2012 08:27

She was so alone, and she must have been terrified, she must have thought I had abandoned her.

No she didn't, if she knew anything then she knew she was loved. She was warm and fed (all be it from a tube not mum) she was cared for, her parents did everything they could for her. You only had her for a few days, but in those days you did everything you could.

Original poster
greengoose · 09/05/2012 09:35

Sash, I'm not so sure..... I know how desperate a baby can get if they aren't picked up....Merryn wasn't picked up for six days. She was aware... I know this because her brain was monitored daily, and they did startle tests where they clapped and I could see her fright register on the graph. She had her eyes covered shut with gel tape, so she couldn't see me, and she was given paralytic drugs to stop her moving and dislodging drains and tubes. She was about to let out a cry when they put the respirator down on the first night, after that she couldn't make any noise! And they did lots of invasive and painful procedures. So you see I think it was hell. I think it would have been far better if she had died on the first night. But we thought she would make it, so we had to try. If she had made it, we would have explained one day, it would have been worth it. But it wasn't.

OP posts:
Original poster
greengoose · 09/05/2012 09:41

Sashh, I didn't mean that to sound angry at you.... Im not, and I wish I could believe what you posted. I'm angry that she had to go through it, that's all. I'm angry that we didn't stop sooner, and I'm angry I didn't stop that man who did the clap tests and ask him not to scare her. I wish I had asked to see what happened on the monitor when we sang to her instead.

OP posts:
HalleLouja · 09/05/2012 09:42

It was worth it. You weren't to know the op wasn't going to be successful.

Beautiful name by the way. Not quite the same in any way at all but after my son was born for the first day I hardly saw him in scbu. I was too scared and it didn't feel real. He knows I love him despite my guilt about it.

imogengladheart · 09/05/2012 09:45

This reply has been deleted

Message withdrawn at poster's request.

ExpatAl · 09/05/2012 10:28

Dearest Greengoose, my boy was boy couldnt open his eyes until the last day - he was taped and tubed and wired and he knew i was his mum. When you put your hand on her she knew. She knew your smell and your voice. She knew my darling. She really did. I understand totally all the 'I wish' - it is terrible to remember your child so incumbent on the machines of course we feel doubt. However, like my son, Merryn deserved the best possible shot at life and she got it. She also had a lovely nurse who was kind and loving to her when you were not able to be there.

Original poster
greengoose · 09/05/2012 10:46

Hi ExpatAl.... Thank you...but I'm so so sorry your little boy (and you) went through all that.

I'm just having a crap day. I know we had to do what we did. I know she deserved the chance, and I know if she was still here these horrors would fade..... But it's so fresh and I think it always will be. There is so little... Not anything really, about her time here that wasnt awful. I cant get my head out of PICU today.Im not managing very well.

OP posts:
ExpatAl · 09/05/2012 10:58

It is fresh and it will be for some time. And some days you'll be fine and then it will suddenly hit you as if it had just happened that morning. I'm so sorry you've having a hard day. I'm sorry too that it had to happen to me and my son. I will always be changed as will you and your dh. It is shitty and cruel, but there is no escaping it, so we need to carry on. You will be fine, I promise you. Sending you gentle hugs. Don't forget you had major surgery and your hormones are crashing - be kind to yourself.

imogengladheart · 09/05/2012 10:59

This reply has been deleted

Message withdrawn at poster's request.

dovebird · 09/05/2012 11:52

greengoose.
she knew you was there for her darling, even if her eyes were closed she would haveheard and recognised your voice
you had no choice bu t to try for the treatment, but yes its terrible it didnt work.
and im sure you wish that you didnt have the treatment and that she just died in your arms.
but we dont have a crystal ball and we dont knwo what will happen in life so we make the best of the sitution we are in, and thats what yu did, you made the best and right choice for the situation you was in at the time.
you did the right thing.
she loved you and she knew you loved her.