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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 My Story

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Posts : 103
Join date : 2009-03-24

PostSubject: My Story   Fri 26 Jun 2009, 9:25 pm


I'm new....well have been lurking for a while but thought i would share my story. I developed PE at just over 30 weeks. When I look back I think I probably had it a lot earlier than that- had my flashing lights and everything like that a few weeks prior to that. I also think that at a previous midwife appointment (where I always felt we were like cattle being herded through as quickly as possible) that they missed out on vital signs that I was telling them.

Anyway, my DD was born at 31 weeks exactly- I got fed up of people saying oh she was not that early then as we had our fair share of a journey through NICU! I went to my GPs on a Monday - after reading an article of pre-eclampsia at the weekend I felt it was like a tick list and I should get myself checked out. My BP was 186/126 and I was retaining water so couldn't produce anything, when I arrived at hospital my urine was ++++ for protein. I had to leave the GPs in an ambulance as she wouldn't let me travel any other way. I was sure I would be given some pills and sent home- how wrong was I!! Aoife was then born on the Wednesday by emergency cesarean. I didn't get to see her for the first 24 hours and probably wouldn't have got to see her for several days if it wasn't for an old style theatre nurse who gave me a jab of morphine and quickly whisked me off to NICU to see her for 5 minutes- all the younger nurses were too much by the book in terms of health and safety....I seem to be going off point here!

Aoife was ventilated for the first thirteen days and then was on C-PAP for a further 76 days. Although we were lucky that we didn't have other problems it seemed like forever that we were on C-PAP. We would get time off and then she would hit a low and we were back on it for 24 hours constantly. We then finally moved to low-flow! After 117 days in hospital we finally came home on 0.5l of oxygen. We quickly adjusted to life at home on oxygen- I saw it as another bag! We went away on holiday and tried to not let it restict us too much. Eighteen months later we became oxygen free.

Aoife has caught up so much- you would never gues she was a prem baby now. She is sociable, seems really bright and is now wearing clothes that are 'bigger' than her actual age.

We are now getting close TTC no 2. Although I am not frightened (yeah right) of having PE again I am trying to be more practical this time! I don't think I could cope having another baby in NICU over christmas! I also would feel so guilty leaving my DD and spending so much time at the hospital or visa versa. In saying all this I could be PE free next time! I went to my GP who said she could not guarantee I would be consultant led next time?? I hope I am - I don't think I would feel comfortable being midwife led.

I feel like I am starting to waffle lots now! Well this is my story. I do think I am blessed to have a beautiful daughter who I love so dearly.
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Join date : 2008-05-31
Location : West London

PostSubject: Re: My Story   Sun 28 Jun 2009, 9:28 pm

Hi Mossy!
Welcome to the site. Sorry to hear about your PE & Aoife's brave struggle through NICU. So glad she's a healthy happy little girl now & that you feel brave enough for no.2.
You will definitely be consultant led for no. 2 & need to make sure of it - I would request a pre-conception review with your consultant to get any relevant advice about early aspirin etc & make sure you know about your appointment schedule for no. 2. Make sure you have everything you feel in place so you feel confident & happy about being pregnant again.
Take a copy of the PRECOG guidelines if you need to.
Wishing you all the best
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Liz Pidgley

Posts : 702
Join date : 2008-04-23

PostSubject: Re: My Story   Mon 29 Jun 2009, 11:41 am

Hi Mossy,

Welcome to the site.
Congratulations on the arrival of your daughter & 'getting through' the turbulent times in NICU.
Your story felt very familiar to me, especially the Christmas in NICU & CPAP.

Mouse is absolutley correct. Your care through any pregnancy now should be consultant lead & if your GP cannot guarantee it then it is your right to demand it under the guidance set out in PRECOG.
I would also agree that a pre-conception appointment might be helpful as there may be things on offer to help improve the odds of reaching a term / PE free delivery.

Of course we will be here to support you all the way through if you would like - please let us know if we can help.

Best Wishes

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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Posts : 117
Join date : 2009-02-23

PostSubject: Re: My Story   Tue 30 Jun 2009, 10:02 am

hello there i thought you'd eventually pop up here!

good to see you over here as well!

I'm going through the experience of trying to get the preconception appointment unfortunately it might be a bit late but I'll keep in touch anyway.

Glad to hear Aofie is doing so well. Could she share the secrets with Eleanor sometime?

good luck and take care Elizabeth x
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