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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 another newbie with a puzzle to solve

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sparkling
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PostSubject: another newbie with a puzzle to solve   Mon 23 Feb 2009, 12:43 pm

My daughter Eleanor was born at 28+1 by c - section in November 2007 she weighed 1lb 4oz so was very very tiny for her gestation. The reasons for her early delivery are still somewhat hazy 16 months on.

The main reason for delivery was based on the doppler flows which were starting to reverse they hadn't got to absent.

However the only reason i got to this was because i felt rubbish at 27 weeks so was sent to hospital for monitoring where my blood pressure was high.

I spent a week in hospital having a variety of scans etc because Eleanor was found to be small and the fluid reduced.

I had one urine test where there was ++ of protein but a 24 hour collection didn't show anything of any significance.

I have had 2 debriefs now with the consultant in Sheffield ( I was transferred to another unit for ICU cots) and he's said twice now that i didn't have pre eclampsia but did have pregnancy induced hypertension. i wasn't showing any other signs of pre eclampsia but there was definitely a blood flow issue between the placenta and baby.

The reason i come here is that a friend has recommended the forum to me to help me get some reassurance before TTCing no 2. I honestly can not cope with another 5 months in NICU with a very poorly baby so i need to do everything I can to make sure that it doesn't happen again. Whilst i konw that there is a chance it could happen again i need to be certain I've given it my best shot etc etc.

Eleanor has ongoing issues and is still on oxygen because her lungs aren't in the greatest of health. She's still small for her age at 16 months she's 7.5kg! However her development is great she's now cruising the furniture and crawling. She also has a hearing problem but we're not sure how bad that is at the moment we're trying to get to the bottom of that one too.

Any advice, similar stories suggestions of where to go from here gratefully received.
TTCing is going to take some planning as i have an implanon implant that needs removing before anything can start to happen.
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Liz Pidgley
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PostSubject: Re: another newbie with a puzzle to solve   Mon 23 Feb 2009, 1:51 pm

Hi Sparkling,

Welcome to the site - I hope we can offer you the information & support you are looking for.
Many Congratulations on the birth of your daughter. I really do understand the 'trials' of a long stay in NNU & then bringing home an oxygen dependent baby so am not at all suprised you want answers!

There is lots of research which says protienuria with or without hypertension is preeclampsia if there are other clinical symptoms. However there is less definative evidence the otherway around and women such as yourself find themselves given a diagnosis of PIH (Pregnancy induced hypertension.) It then gets really confusing because the PRECOG guidelines medical officer categorically states that women who develop PE 'are likley to develop moderate to severe PE, often within 2 weeks'.

2 plusses on a dipstick is significant but as we know, our bodies are not always consistent!
Dipsticks also come with the uncertainty of cross-contamination & user misreadings, however, when completed properly are often more reliable!
Whilst the 24 hour urine is the 'gold standard' for measuring protien it sometimes just doesnt meet the need. This is when the PCR urine test is most useful as its what happening now! (PCR is Protien/Creatinine Ratio)

I would suggest that as you had the hypertension and reverse diastolic flow that you did indeed have PE and as such any subsequent pregnancy should be managed as such.
To be honest, even with out a definate diagnosis of PE, given the history, it would be prudent to manage your care this way as its the safest.

Would it be worth you obtaining a copy of your notes and having read them through at your own leisure, taking them to someone independent? You dont say where in the UK you are but I have a list of experts who would be happy to help. You could then ask what care package you should receive should you TTC again and for this care plan to be written to your GP to organise. It may be that there was an underlying cause for the PE. Again research has shown, most women who experience PE (or PIH!) have 'stickier blood' than those who dont. A simple blood test could prove this and something as simple as aspirin (or heparin injections if you have really sticky blood) may be needed for your pregnancies.

As for similar stories, Im sure many women will here will relate to part if not all of your worries, so please dont feel alone.
If you would like to talk this through, Im in the office tomorrow - you could call me on 0845 241 0989

I hope this helps.
Warm 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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sparkling
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PostSubject: Re: another newbie with a puzzle to solve   Mon 23 Feb 2009, 4:33 pm

Liz

Thanks for your reply.

I live between Leeds and York. York is technically my local hospital under the PCT rules and where all Eleanors care is at the moment. However we go to Leeds for more specialist services such as respiratory.

Details of a consultant would be good.
How do i get my notes?

Thanks
Elizabeth
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Liz Pidgley
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PostSubject: Re: another newbie with a puzzle to solve   Mon 23 Feb 2009, 4:55 pm

Hi Elizabeth,

I will email you the contact details to the experts in your area. We have one in Leeds so that shouldnt be a problem at all!
If your GP wont refer you, let me know & I willtry & help as I know the Professor personally!

Getting a copy of your notes is quite easy - You do this by phoning your hospital & ask to be put through to medical records. Once through explain what notes you want (ideally between 2 specific dates or you may find you get notes from when you had your tonsils out aged 4!) They will then send you a form to ascertain you are who you say you are & that you promise to pay them for the service. Itís usually only the copying charge with about £20 added on for time/postage etc. (They can also give you a rough estimate of the cost.) About 14 days after they receive your authorisation they will send your notes via recorded delivery which must be signed for by you. They will then invoice you.

I will email you the other details now.

Best Wishes
Liz

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Lesley
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PostSubject: Re: another newbie with a puzzle to solve   Mon 23 Feb 2009, 8:18 pm

Hi Elizabeth, glad you decided to join us! Very Happy Liz has said exactly what I thought she would (thanks Liz). It really is worth going to see one of the experts, it put my mind at ease somewhat.

I suffered very little protein but was still diagnosed with pe/hellp so don't see why they should go on that alone.

If you need any extra help with obtaining your notes love just shout. I got mine from both hospitals before seeing prof Thornton and it was a real eye opener.

Perhaps we should do Meadowhell when you've got the notes and an appt date and we could go through it together.


Lesley xxx
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