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Bereavement

Find bereavement help and support from other Mumsnetters. See also your choices after baby loss.

Original poster

My baby daughter died. I want her back

672 replies

Whatevertheweather · 30/08/2011 11:22

Hello, have been a regular poster since my eldest daughter was born 4 years ago. Never expected to be starting a thread in bereavement.

I was 35 weeks pregnant last week when I stopped feeling regular movements. A frantic dash to the hospital ended with an emergency c section after a scan showed she was showing signs of a viral infection. They thought we gone in time but when they took her out she was much worse than they expected. She died after about 40mins. We spent 2 precious nights with her before having to leave her there and come home for our other daughter.

I am numb. I can't stop shaking. I hate myself everytime I close my eyes I see 4 red words on a white background 'you should have known'

I just want her back - she shouldn't have even been born yet

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Original poster
Whatevertheweather · 25/10/2011 16:50

Have been to get the results. Erin had an extensive cancerous tumour in her abdomen and diaphragm. We are completely in shock - of all the causes of the hydrops we'd read about this was not one. The consultant said it is so very very rare that no-one in Portsmouth or Southampton hospitals has ever seen it before and they cant find a similar case in any reference books. The tumour has been sent for specialist oncology testing to determine where it originated. There is a chance that it will have left behind cancerous cells in my body so I may need to have some tests done. They have asked our permission to publish Erin's case. Positives are no effect on Katie, not genetic or chromosonal and so unbelievably rare it really shouldn't happen again in future pregnancies.

Everything else about her was completely and utterly perfect. She had grown and developed beautifully despite the tumour - what a strong girl she must have been. My beautiful, brave girl never really stood a chance no matter what I or anyone had done.

Just a mutation of one bastard cell.Feeling completely drained and very very unlucky
Sad

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kirstymh · 25/10/2011 17:31

I am so very sorry. I havent commented before but I have been reading your thread over the last few days and been thinking of you today.

I dont have the words to comfort you but my heart goes out to you and your family and Erin must have been a little fighter to do so well despite the tumour.

Northernlurker · 25/10/2011 17:37

WTW - I feel stunned just reading your post so what it muct be like for you I can't think. I hope the doctors can get you some more information and obviously check you out very carefully.

cupofteaplease · 25/10/2011 19:01

How utterly cruel. I didn't even realise babies in utero could develop cancer. How are you feeling now you know why? It's so sad that these things can happen and nobody could have known. It must be an added worry that they want to check you for cancerous cells, but I hope they give you the all clear very soon. Wishing you peace and rest x

Four4me · 25/10/2011 19:42

You have been in my thoughts all day, haven't had chance to get on-line till now. What a shocking result. So sad. I imagine that today has taken you right back to 'square one' iykwim. What a brave little girl she was. Massive hugs x

Original poster
Whatevertheweather · 25/10/2011 20:19

Feeling very shocked and a bit scared. It's all so unknown. I didn't even know that unborn babies could have cancer with cup. Have tried googling but can't find anything similar. We're reeling to be honest.

The post mortem report does not make pretty reading. I (or they!) have no idea how she continued to develop and grow completely normally. It would never have been picked up on a scan; the way they described it was like a very thin web of tumours only 4-5mm at the thickest part but so very widespread Sad

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shabbapinkfrog · 25/10/2011 20:41

Holding you close tonight and sending my love as always. Have lit my candle to honour and respect your little fighter. Be gentle with yourself my friend xxx

Northernlurker · 25/10/2011 21:28

Cancer certainly isn't something that comes to mind with babies in utero but that is the time of greatest cell change and growth. In a matter of weeks fetal cells go through so many changes and multiplications. A tumour is just that cell growth gone out of control so I suppose really it's surprising we don't hear of it more. I know of one baby born with a brain tumour. They are about 18 months in to treatment now, still with an uncertain but basically hopeful prognosis. It can happen if you are desperately, desperately unlucky. As far as I know the mum of the baby with the brain tumour has not been affected by the illness though.

BOOareHaunting · 25/10/2011 21:43

Oh whatever Sad

I was thinking of you today (went to ASDA so past your way!). I'm sorry I didn't know you were going today. I'm also sorry the results have been a shock. But they do show what an amazing strong girl Erin was - she battled the cancer to meet her Mummy, Daddy and big sister.

I'm off this week for half term too so PM me if you need someone or anything.

(((HUGS)))

Thzumbazombiewitch · 26/10/2011 01:28

Bloody bloody hell! that shocked me rigid, I can only imagine how much worse it is for you! Shock

Re. developing normally with cancerous growths - it is amazing what foetuses can do, consider the extremely rare cases where one partial twin is found inside the other at a much later date, like this one - astonishing! The boy gets to 7 without anyone realising what is inside him! It really does bring one up short in terms of realising the miraculousness of foetal development.

And I echo Boo's sentiment - how very very strong Erin was to have fought against that tumour to at least get to meet you. Bless her! And you and all your family.

I hope hope hope that you are ok and don't need any treatment yourself - I wouldn't expect that you do, it seems to have been very self-contained in Erin, but who knows.

((((hugs)))) for you all xxx

saffronwblue · 26/10/2011 10:28

Whatever, what a shock this news must be. Thinking of your family as you absorb it. Little Erin.

ilovesprouts · 27/10/2011 23:21

so sorry to hear about your gawjuss dd xx

blonderedhead · 28/10/2011 23:29

Thinking of you wtw.

Thzumbazombiewitch · 29/10/2011 14:05

Whatever - how are you doing? Are you ok? Prayers for and love to you all. xx

blonderedhead · 30/10/2011 21:28

We're thinking of you every day.

crazynannawitchbitch · 30/10/2011 21:30

How are you doing Whatever? Smile

Original poster
Whatevertheweather · 30/10/2011 22:04

Thank you all for your lovely messages. I'm doing 'okay' I guess. Went away for a few days to stay with friends in Nottingham. Their dd and Katie have known each other since they were 6 weeks old and used to go to nursery together until they moved. It was really lovely to see their bond was still very strong. They had a big Halloween party - had a big wobble when someone turned up with their 12 week old dd. Hard to believe Erin would be nearly 10 weeks old now if she'd survived.

I'm struggling a lot with the cancer diagnosis. I am so upset to know what a hard fight she fought all the way through. Poor little girl Sad Just have to wait now and see if the specialist oncologists can determine what type of cancer it was and if it's likely to have any affect on me. It's just so strange to think our daughter had something so incredibly rare. It actually makes it seem a lot more unfair Sad. It also feels weird to think I carried so much cancer around in my body for 8 months. But then I feel bad for feeling weird about it.

I think I now understand the term grief-stricken. That really is how it feels. Sorry to ramble on. I'm trying to keep my talking about her to a minimum in RL so its a bit of a relief to get it out. Everyone just wants me to feel better now and 'move on' but I just can't yet. Even my lovely lovely friend said when i got upset about seeing the baby at the party 'i know it's hard but you've got to get used to it'. I know that but its so hard. Think I'm putting on a good show though Smile

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BOOareHaunting · 30/10/2011 22:11

Hi WTW Shock at your friend (sorry). You don't have to 'get use to it'. You'll learn to deal with it when your ready but you never have to be use to it or OK with it. You only have to be how you feel when your ready to feel with it.

Glad you had a good time away and DD1 got to play with her friend again. Like I said - if you ever need anything (and I mean anything) I'm only down the road.

Take care.

IwishIwasmoreorganised · 30/10/2011 22:14

WTW, what shocking news for you all.

It's going to feel unfair - because it is exactly that. Far too unfair for anyone to have to go through.

Erin was such a tough little fighter that you should talk about her whenever and to whoever you want to. Your friend was right I suppose about you having to get used to seeing other babies, but that will happen in your own time and not when somebody tells you that you should. Keep up the show and using MN to pour out your heart to if that's working for you. There's no right or wrong way to deal with such a dreadful ordeal.

xx

blonderedhead · 30/10/2011 23:51

It's a sad truth that the people closest to us are often the least able to 'say the right thing' because they want us so desperately to feel better. Sometimes the comfort of strangers is that we can just sit with you and hold your hand while you feel your pain. No pressure to get over it. No need to change the subject. Just stay with us and talk about Erin, whose name will always stay with us.

Thzumbazombiewitch · 31/10/2011 01:23

oh dear - your friend probably meant well, but still - she has no idea. You take your own time to heal over it - it could be weeks, months, years - everyone is different and no one really has the right to tell you you should be over it by now. :(

You can always talk about it here. We'll always listen.
xx

crazynannawitchbitch · 31/10/2011 09:00

Take your time,Whatever,take your time. Smile

Original poster
Whatevertheweather · 31/10/2011 23:10

Thank you all. She is a really good friend and I know she meant no harm. Blonderedhead - you put it beautifully and you are right.

Much better day today busy organising a little Halloween party and trick or treating with K which she loved [hsmile]

Am meeting the wonderful Knottylocks tomorrow as she has so kindly finished the wooly blanket hug for K. MNetters really are the best people. I can't wait to see K all cuddled up in it - will post some pics Smile

Thank you again - your messages are so lovely xx

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saffronwblue · 01/11/2011 10:18

Glad you had a better day. It is desperately hard when you feel you must put on a good show. I admire your maturity that you can see your friend cares for you, just didn't get the words right.
You do not have to grieve to anyone else's agenda- nor is it possible to do so. Just keep on hanging in there and I hope you start getting more good days than bad days.
Glad K had fun trick or treating.

Original poster
Whatevertheweather · 01/11/2011 13:29

Knottylocks has just delivered the most beautiful mn blanket to me. It truly is the most gorgeous thing I have ever seen. Happy and humbled tears from me today Smile

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