Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 stillbirth of my baby daughter

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jules
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PostSubject: stillbirth of my baby daughter   Mon 01 Jun 2009, 10:13 am

I lost my baby daughter on 9th May at almost 26 weeks. All seemed fine until I developed pre-eclampsia a few days before (I had a slight headache) on 6th and was admitted to hospital with bp 180/100 and protein +++. Initially my bp was brought down with labetalol, and it was thought my baby looked fine, albeit small. I was given steroids and they felt they could keep the pregnancy going a bit longer safely - but were worried about my condition, not my daughters. They were being reasonably optimstic about her chances at that point. But 24 hours later she had died, and then my condition declined dramatically, with bp rising to 220/110 and not responding to drugs for 3-4 hours, absolutely massive oedema (my mother did not recognise me), fluid overload, kidneys failed, HELLP etc. etc. I felt that I was dying at that point; all my organ systems seemed to be shutting down, but obviously I am still here. However I am just utterly devastated at what happened - not to me, I can get over that awful though it was, but to my daughter. I am unable to go back to work, unable to sleep, and all I want is the one thing I can't have. OB seemed surprised that she died so suddenly (the scans and heart rate etc seemed ok even only a few hours before hand, something must have happened very suddenly, or else all those tests were very misleading in my case), but considering how ill I was it does not seem that odd to me that a 1lb 8 oz baby could not survive that. I don't know what else to say - I've been offered support but unfortunately I did not like the hospital counsellor (who messed up the funeral arrangements for my daughter, making me very very angry, and frankly did not seem very empathic anyway - yes she has the certificates but no deeper understanding). I'm angry with everyone and blaming myself (for not seeking help earlier, even though I had realised I was feeling a bit odd over the previous week), and my GP (I did go to see them twice over the previous week, complaining of headaches and my baby moving less - they gave me antibiotics). I know its not very long ago, but I just feel my life has been irrevocably changed and damaged. All I have left of my daughter now is a few grainy photos the hospital took and the foot and hand prints. I wish I had held her directly after birth whilst she was still warm - but that was 2am saturday morning, over 29 hours since I found out she died and labour induction started; I was exhausted, very ill and drugged up with diamophine (and all sorts of other stuff, of course). Now she is really gone. Work have hassled me for sick certificates, suggested I take annual leave, and asked when I am going back. They received vitriolic replies from me. Some people have even (helpfully) given me their own hypotheses as to what I did wrong; they are lucky they were unharmed. I can understand this though as few people experience stillbirth, and all the pregnancy literature given out tends to imply that (although an early miscarriage might be unavoidable) if you follow all the "rules" to keep yourself and your baby healthy then all will be ok. Sadly, I know this is just an illusion of control. Stillbirth hardly gets a mention - even pre-eclampsia doesn't until the 3rd trimester, and I hadn't quite reached there yet. No-one ever gave me any information on pre-eclampsia that might have helped warn me, although I was 37, and reported a strong family history of hypertension and kidney disease. I feel the system of NHS ante-natal care (not starting till 25 weeks) let me down, as that was not early enough for me - my pre-eclampsia was already advanced when picked up at 25 weeks + 5 (the first appointment I could make), and with hindsight I am sure it had been present for a week or two before. I guess I am just at the angry phase! I have read some posts on here, and know I am not alone, but I don't know how some of you have managed come through this and pulled your lives back together. This was my first pregnancy, and with my age and this very severe early onset pre-eclampsia, another successful pregnancy is a bit unlikely now, though not completely impossible. However, I just want my daughter back; she was just perfect.
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ingrid
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PostSubject: Re: stillbirth of my baby daughter   Mon 01 Jun 2009, 7:43 pm

Dear Jules

I am so sorry to hear of the loss of your precious daughter all of us on this site that have lost loved ones can fully understand how you feel,

You say you were nearly 26 weeks I am not sure if you could qualify for materninty leave? my Daughter lost her little girl at 26 weeks due to severe PE and she got Mat Leave.

Please go to your GP I am sure they will sign you off work it is far to early to go back you need time to grieve and to get yourself well again.

I dont know what words of comfort I can give you but please be assured we are all here to help you through your grieving process dont hesitate to let of steam however small you might think it is we are all here for you and your family.

Take care

Ingrid x
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Liz Pidgley
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PostSubject: Re: stillbirth of my baby daughter   Mon 01 Jun 2009, 9:26 pm

Hi Jules,

Welcome to the site but I am so sorry to hear of your experience of PE and the loss of your perfect little girl.
I do hope you will find some support from us here. Many of us here will agree with you that sometimes 'counsellors' are not the most helpful when you are thinking to yourself 'ah but how would YOU feel if this happened to you'?

All the emotions you are describing are so normal, whether your baby had survived or not. In addition to losing her, you lost the dream pregnancy, the birth you had planned and the futures you had imagined together. This in its own right is a huge bereavement.

You say your life has changed, it has. You are the mother of a beautiful little girl.
You also say that all you have are the few grainy photos. You are a mum, you have the most precious gift of getting to 'know' your daughter before she arrived. That first blue line appearing on the pregnancy test, maybe the morning sickness followed by cravings, the first flutterings of her movements as she grew within you...all of those are as real now as they ever were. They just hurt to remember.

Nothing will ever take away the pain of losing her - your pain is the sign she was here - and she was a very much loved little girl.

I will PM you as well as posting here - when you feel ready we will all be here for you & hopefully offer you the support you want to mend your physical wounds and soothe your breaking heart.

Warmest Wishes to you Jules,
Liz

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Every Woman is entitled to understand what happened in her pregnancy when pre eclampsia strikes. I hope to be able to support that process.
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Nicki D
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PostSubject: Re: stillbirth of my baby daughter   Mon 01 Jun 2009, 9:28 pm

Dear Jules,

I am so sorry to hear of the loss of your precious baby girl.

You are definitely entitled to maternity leave. If your child is born after 24 weeks, then you are entitled to maternity leave. You do not need a sickness certificate. Tell work that you will be taking your maternity leave, and that they need to leave you alone.

Take the fullest amount of time that you can. Nothing will take away your loss, but you need to allow yourself time to grieve and you need to be very, very gentle with yourself.

If you feel able to, try to find another counsellor - have you tried SANDS? They will have someone who will have real empathy for you. Also, try ringing Liz on the helpline here - she's amazing, and she may be able to put you in touch with someone local to you to offer support.

Please, remember that you have been through the worst thing a mother can go through, and do not blame yourself. PE is a vile, indiscriminate disease that attacks any of us, and there is nothing that you did to make it happen, or to make it worse.

Be gentle with yourself Jules

Love Nicki x
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Caroline
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PostSubject: Re: stillbirth of my baby daughter   Tue 02 Jun 2009, 12:05 pm

Hi Jules,

I am so very sorry to read about the loss of your precious baby daughter. What is her name?

So many of the feelings you describe are familiar to me as I lost my first baby to early and severe pre-eclampsia and HELLP just over 2 years ago.

I am sorry you've had to join us here but glad you've found this site. If I can help you through this terrible time at all then please don't hesitate to get in touch (even if it's just to rant to someone who just 'gets it').

These early days are so painful and raw so please take care of yourself. I know it sounds like a cliche but the pain won't always feel this unbearable (although I never believed anyone who said that to me at the time either!).

Lots of love
Caroline xxxx
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mouse
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PostSubject: Re: stillbirth of my baby daughter   Tue 02 Jun 2009, 8:29 pm

Hi Jules,
I'm so so sorry to hear about the loss of your precious little girl.
Like the others have said, please don't think there is anything you could have done to change things. You are right to feel angry & lost, I just hope those strong feeling start to fade with time.
I hope you get some help from someone who can understand what you have gone through - Liz can help or will be able to signpost you to someone who can.
Huge hugs to you & your family
xxx
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jules
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PostSubject: Re: stillbirth of my baby daughter   Fri 05 Jun 2009, 8:26 am

Thanks for all your replies and private messages. My daughter's name was Alice. I have seen my GP today and all my blood parameters have now just returned to normal, 4 weeks today since I was induced (I had HELLP as well so platelets went down to 43, ALT 408 etc.). I am coming off high blood pressure drugs as well, as bp now stable (from a max of 216/110). I have an appointment at a nephrology clinic as they believe I may have some underlying kidney disease which might have caused or contributed to this.

Everything in the NHS has "kicked in" to help me now, but it all seems too late as far as I am concerned. I went to my GP twice in the week before I was admitted complaining of headaches, less movement from the baby, and just not feeling right, but no-one checked my blood pressure or considered pre-eclampsia. I know that early onset preeclampsia is rare, but ante-natal clinic appointments are not set up early enough to identify this, and as no-one gives you any information about the condition to protect yourself how are your supposed to manage that? I had a long argument with my midwife about this - where they eventually admitted they never give anyone information about pre-eclampsia because they don't want to worry women. Not very helpful as far as I am concerned. I am sure this all sounds familiar to some of you.
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HayleyP80
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PostSubject: Re: stillbirth of my baby daughter   Fri 05 Jun 2009, 8:31 pm

Hi Jules,

A sad but warm welcome here.

I too am so sorry to read of the loss of your precious little Alice.

Your experience sounds very similar to mine so please do not hesitate to message me if I can help in any small way. And as Nicki said, both Liz and SANDS are amazing support if you feel ready.

Love and hugs
Hayley xx
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Bell
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PostSubject: Re: stillbirth of my baby daughter   Sat 13 Jun 2009, 9:48 pm

Hi Jules,

A sad but warm welcome to the forum. I am so sorry for the loss of your beautiful baby daughter Alice. I found when I was pregnant I didn't get any information on pre elcampsia. Even as a nurse it was something we were never told about.

Don't blame yourself as none of this is your fault. Don't think of the what ifs. After my wee boy was still born I keep asking what if I had got help earlier would it have made a difference?

You should be entitled to your full mat leave. It is entitled if you have your baby at 24 weeks or over.

Things do get easier in time.

Take care

Bell.x
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