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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 Where do i go from here

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emma29
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Join date : 2008-05-24

PostSubject: Where do i go from here   Sat 24 May 2008, 10:11 pm

Hi my name is emma,

I got pregnant very quickly with my first son in 2005, at around 24 weeks i began to show symtoms of PE. This eventually developed in to severe PE and no option was left but to deliver our baby at 26 weeks. He was delivered by emergency c-section, we were shocked how tiny he was but he seemed to have some strong lungs on him, but after 30 minutes the doctors were unable to save him and he sadly passed away, it was the most dreadful moments of our lives and things have never been the same again.

After we were advised to take aspirin to help maybe push any future along a bit further, this i did and i fell pregnant six months later. Unfortunately at the first scan we were devasted to discover that our baby had died, there was no heartbeat. I was given some tablets to try pass the baby naturally, the hospital didnt think this had happened and I had to have a d and c on new years eve, where without my knowledge my womb was damaged. Its turns out now i have found out the baby had passed naturally which i thought it had, so nothing was removed in the d and c.

We decided to take a bit of break then try again, six months later i became pregnant again everything seemed to go okay until about 24 weeks and again PE reared its head again. I was kept in hospital and just short of 26 weeks during one of the midwives checks on our babies heartbeat nothing could be found, they brought in a scanner and it was clear to see our baby had passed away. I tried unsuccesfully to deliver him naturally but my womb ruptured from my previous c section, after four days of being messed around a c section was done and our little boy was born, it was like a nightmare we couldnt believe we were going through this again.

Despite all the pain and trauma we have gone through we do want to try again soon, we have been told to take aspirin again, along with heprin at twelve weeks and calcium supplements. We had lots of tests done, mine have all come back okay, but my husbands were lost, so they had to be done again. When we saw the consultant we were told that everything would be confirmed in writing and details of the test they had done, this was nearly a year ago and i've never had anything back. I have chased the hospital, been to my doctors who have written twice to them as apparantly they should have the information too. I've asked to be referred to another hospital, this seems to be going no where either, i was told that i might have to go against a panal as i could get the care i need locally so would have to justify the reasons i wouldnt go to the hospital i was referred to last time. After everything we have been through we just feel like this is our last shot and need to be sure that we are comfortable and confident in the care we get, sorry for rambling on.. love emma xxxxx
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Liz Pidgley
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PostSubject: Re: Where do i go from here   Sun 25 May 2008, 9:28 am

Hi Emma,

Welcome to the site, I am so sorry to 'meet' you under such sad circumstances. I really hope that we can offer you some support here.

'Panels' are a very daunting thought to face. They are made of Drs and money holders basically and you just need to tell them exactly as you have told us. Be very clear about why you dont trust where you have been cared for and why you feel the place you want to go will be offering more than can be delivered at the last place. Writing a script to read from and making a copy available to every person at the panel can really help in several ways. 1st it helps to focus your thoughts about what is really important to you, it shows you are prepared to fight by documenting what you say and gives the Panel something to reflect upon when you are not there. You can also ask PALs to help too this is the very role that they were designed for. PALS stands for Patient Advisory & Liaison Service. There is one attached to every hopsital trust & are independent bodies. The number for your local office should be in the phone book.

On an emotional level, I can only begin to imagine the heartache you feel, for your losses and for your want to hold your baby in your arms forever.
All I can say grief is an an incredibly powerful emotion and it wraps itself up in many different disguises. You may find you 'flit' from being calm & 'ok' to sobs of tears, riotous anger and back again all at a moments notice. This is a normal reaction and it will take lots of time for those wounds to heal.
Have you spoken to your GP about supporting you locally (through a pregnancy counsellor) through your journey? They can really help, especially to give you the energy grief sucks away and that you will need to fight?

I understand there are some things too that cannot be said on a public forum, so if you need to ask anything more sensitive, please PM me or our Befriender, Donna. (Or both!)

Warmest Wishes Emma, I truly hope things will go to plan for you.
Liz
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emma29
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PostSubject: Re: Where do i go from here   Fri 06 Jun 2008, 8:46 pm

Thanks for the advice Liz.

I've never seen a counsellor, its never been something that has been offered to us really. I sometimes think maybe i should do.

I seem to cope okay, then all of a sudden i have a bit of a wobble and it just comes and i dont know why, on the anniversary recently i made the mistake of going to work and try to act like it was a normal day, but as soon as i got there and saw the date everywhere i just cried at my desk and i really felt like i couldnt stop, also because it all happened a little while ago people forget and can be quite insensitive at times and that can be quite difficult to deal with.

Thanks again I will keep you posted xxx
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Liz Pidgley
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PostSubject: Re: Where do i go from here   Sat 07 Jun 2008, 8:34 am

Hi Emma,
I was thinking about you since I last posted. I have PMd you with another option.
Best Wishes
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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milliesmummy
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PostSubject: Re: Where do i go from here   Sun 08 Jun 2008, 11:58 am

oh you have had a terrible time. i dont have any advice but would like to say hi im paula and offer my support x x x
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mouse
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PostSubject: Re: Where do i go from here   Mon 16 Jun 2008, 8:59 pm

Emma I'm so so sorry to hear what you've been through. I can't believe you haven't been offered counselling & hope that Liz has been able to put you in touch with someone good & that it will help with the past but also give you hope for the future.
Big hugs
Mouse xxx
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ingrid
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PostSubject: Re: Where do i go from here   Tue 17 Jun 2008, 6:16 pm

Hi Emma

I am so sad at reading your story it has taken me until now to just say how sorry I am at your sad losses. I do hope you find all the help you need and hopefully the best care that can be at the Hospital of your choice and I wish you all the luck with your next pregnancy and hope all goes PE free

take care

Ingrid x





Ingrid grandmother to Brianna born asleep at 26weeks due to severe PE
grandson due June 2008
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emma29
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PostSubject: Re: Where do i go from here   Sat 28 Jun 2008, 7:50 pm

Just wanted to say thank you to you all for your words of support xxx
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