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 of PE and HELLP

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clearmoonlight13
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PostSubject: My story of PE and HELLP   Mon 26 May 2008, 10:18 am

Hi all
Here is my story of PE and HELLP.
I was 26 weeks pregnant and om holiday, visiting my family, when it all started. I started feeling unwell, my bp was raised, and I was very swollen, specially in my ankles. The day before I was due to fly back to England, I decided to visit a maternity emergency unit, due to the fact that my bp was continuing to go up. I already knew about PE and actually thought I had this condition before anyone mentioned it to me. The doctor that saw me, though knewing that I was flying back the following day, my raised bp and protein in my urine, told me to fly back and visit my GP whenever I got back. Which I did the day after I arrived in England. The GP sent me to hospital. There, they monitered my bp, which wouldn't come down and decided to admit me on the pre labour ward to monitor me. I was responding to medication quite well, took two steroid injections to help my sons lungs to mature, my bp was going down, and was due to come home, when it all changed. Duirng the night I developed en epigastric pain, a terrible pain, and was immediately taken to the labour ward and was told I was in liver failure - HELLP wasn't mentioned until after I had my son, and I had never heard of this condition before. They also told me that they would have to deliver my son to stop this condition progressing. To my partner they said that they would have to stabalize me before they could preform the c section. I remember looking at my hte bp monitor and my bp was so high, I only thought I would soon be unconscious. This didn't happen however, and that night was the longest and worst of my life. I knew, the following morning my baby would be delivered, only at 27 weeks, but I was in so much pain. I felt like my struggle was worth it, as I was fighting to give my son another hour, another minute before he came into this world at such an early gestation. So, on the following morning, Dylan was born, weighing only 920gr, 2lbs. He cried and that made me cry too. I had a glimpse of him before he was rushed to the NICU doctors and nurses. I was in pain on my shoulder due to the damage done to my liver. The following days - 3 in total - I was ebd bound, so couldn't go and see my lovely baby.
I developed pleural effusion due to the retention of fluids on my lungs, ascites, my platelets level went down to 18 and had several blood and plasma transfusions. After these 3 days without being able to move, it was so difficult to get my mobility back, but at the first opportunity I went to NICU to see my baby.
I wasn't daunted by the incubator and tubes and machines and wires. I was astonished at how beautiful and perfectly formed my 2 lbs baby was!!
After a week I was discharged, but Dylan suffered a perfuration on his bowel, so was transfered to London to have surgery on his bowel - at only 10 days of life! He had a stoma fitted and that got reversed later on. Dylan spent almost 5 months in hospital. He has chronic lung disease, had a pda that is now closed. He came home on oxygen, but after a few months came off it.
I am glad to say Dylan is now almost 2 years old, and though small for his age is an active, full of energy healthy little boy.
The scars of PE and HELLP will always be with me... I feel robed of the end of my pregnancy, so much I never experienced. I blamed myself, every time Dylan had a problem - after all, it was due to my inability to give him a nice start in life. I don't blame myself anymore, as I know there was nothing I could have done to prevent this happening. Sometimes, I still sit and remember the whole experience and tears roll down my face - how lucky we were with the way Dylan is now, but how easily this story could have had a different ending....
Now, the question that I live with is if I should try or not for another baby. I visited a specialist consultant, got my notes from the hospital, hoping all this would help me to make up my mind... however, I still haven't decided. I so want more children, but couldn't go through it all again, to see another baby go through what Dylan went through.
I hope my story will help someone
xxxx
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molly
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PostSubject: Re: My story of PE and HELLP   Mon 26 May 2008, 2:17 pm

Dear CM, What a most encouraging story! I hope you and young Dylan share many more happy years together ,you have shared a very special journey, and I am sure when he is old enough he will be so proud of the fight his 'Mum' put up for him .
I am so pleased to be able to read (through this site) of the many brave young mums who go through this traumatic time and come out the other end with the courage to tell their story to all the other people who may only be recently 'aquainted'. It is also a brilliant venue for those who are still wondering 'what the hell happened'!, I had no medical knowledge at the time of my daughters 'urgent delivery of her baby' but my pure instinct as her mother told me we were in a very dangerous situation, I had been told by all the doctors and medical staff not to hold out any hope for the baby but to try to be strong for my daughter!, I had told myself to expect something like a prawn at the delivery! and I could hardly trust my eyes when they delivered a tiny bundle that was perfectly formed!. I was so shocked but I tried not to let it show on my face for my daughters sake who repeatedly asked 'is she ok?' remembering what they had all said about 'no hope'.I instinctively touched my daughters face and then placed this 'kiss' on my grandaughters cheek from her Mum, I am sure you are all familiar with the following few months of such an enormous battle , each day was a fight to keep her alive and without those wonderful people and the courage and grit of baby and mum it could so easily have been a different story.I hope this site will grow and prosper through the many stories like yours, and the continued support of Liz who has stood where you have all stood! and understands the emotions,as well as having the medical knowledge to answer the many questions she is asked. I wish her a great future on this site and I know that she will bring her warmth as well as her help to you all. I shall look forward to hearing from many more PE Mums AND DADS! AND GRANDPARENTS! without the support of a good family it could have been a lot tougher?.
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Sophie
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PostSubject: Trying for another baby   Tue 27 May 2008, 10:51 am

I had my little boy at 31 +5 by emergency c-section after developing HELLP relatively quickly (we think over the space of a couple of weeks). The whole thing was very traumatic even though my little boy turned out to be very strong and is now a small but bright and energetic two year old.

I know deciding whether to have another baby is a huge dilemma. Having sought advice from the hospital when my son was a year old we had pretty much decided not to risk it, even though the advice we got was fairly positive in a non-commital way.

However this Christmas we had a re-think and I was lucky enough to get pregnany straight away. I am now 24 weeks down the line and have been taking aspirin since about 7 weeks. I feel fine in myself and fingers crossed this will continue. I am lucky to have a very experienced community midwife who has been upfront with me from the start in saying that I may well run into some problems, but that the usual pattern is for these to be later and less severe.

I knew before hand that it would be hard to 'enjoy' another pregnancy - there are a lot of extra appointments, especially from now on, and things that maybe wouldn't have caused concern last time round (tummy measurements on the small side) are being taken very seriously by both my midwife and the hospital. There will be lots of extra growth scans and BP and urine tests every week. I'm trying to switch off between appointments and am going to try some hypnotherapy to relax in an attempt to stop my BP going up every time I go to the hospital!

I do feel that I have taken a risk and I have no way of knowing whether I have done the right thing - hopefully a healthy baby will be the end result, but I am realistic in not expecting to get to full term either way. I don't think there is a right or wrong answer but I think that my partner's support in wanting another baby was the deciding factor in going for it, as it made me realise that I did really want another child. If the worst happened this time, I don't think I would be brave enough to try again though.

Good luck for the future, whatever you decide. I know it's a really tough decision.
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Sophie
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PostSubject: Re: My story of PE and HELLP   Tue 27 May 2008, 11:15 am

One other thing I forgot to mention - I was told by my midwife that I shouldn't have been using condoms as my method of contraception prior to trying to get pregnant. Apparently if you have had PE it is better to have your body used to the presence of sperm! I think she said it was to do with its protein content - must make it less alien to your body or something.

Nobody else mentioned this to me before hand, including the doctor I saw at the hospital pre-conception, and I haven't seen any info on this in any fact sheets, so maybe it isn't widely known. Just one to bear in mind if you think you may decide to have another.
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Carrie06
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PostSubject: Re: My story of PE and HELLP   Tue 27 May 2008, 5:46 pm

Hi Sophie, I have come across this theory before and have previously found this info:

Many studies have also suggested the importance of a woman's immunological tolerance to her baby's father, whose genes are present in the young fetus and its placenta and which may pose a challenge to her immune system. As the theory is gaining support, researchers are increasingly recognizing the importance of a woman's continued exposure to her partner's semen as early as several years before conception. One study published in the American Journal of Obstetrics and Gynecology involved several hundreds of women and found that "women with a short period of cohabitation (less than 4 months) who used barrier methods for contraception had a substantially elevated risk for the development of pre-eclampsia compared with women with more than 12 months of cohabitation before conception."The study was also statistically significant at a desired 99.6% confidence level.

Results from research conducted in the past two decades strongly suggest the importance of repeated exposure to the father's semen throughout the full length of the pregnancy due to the immune-modulating effects of key factors in semen.

It took us 14 mths to conceive our daughter but it had no impact on the pre-eclampsia which I developed very early and severely.

Carriexx
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clearmoonlight13
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PostSubject: Re: My story of PE and HELLP   Wed 28 May 2008, 11:48 am

Hi everyone
Firstly I want to say thank you to all the replies my story got. It is so good to read other peoples opinions and stories, experiences.
I suppose what I wish for more than anything, is no longer a possibility. I wanted to be able to have a normal pregnancy, without any concerns. The things is, once you experience PE or HELLP, you will never be able to just try for a baby, fall pregnant, have a normal appointments and give birth at your due time. We must consider taking aspirin, loads of extra tests and appointments. Even which contraceptive method we use!
I know having a premature baby is a terrible experience, no matter what caused that premature birth, but after browsing premature forums, I realize that other conditions are not so debilitating for the future as PE, eclampsia and HELLP.
Wouldn't it be great if we could have a pregnancy without worrying about these conditions, as even if we end up having another baby and PE doesn't happen we forever live in fear of it knocking on our doors again.
I know there are never any guarantees in life... but I just think a future pregnanacy for me would be so hard as I would be thinking all would happen again. However, I so want more children, I can't decide never to try again...
Well, I just wish all the luck for all of us that do try and fall pregnant - hope all our pregnancies are as normal as they can ever be!!
Thank you everyone once more
xxx
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Liz Pidgley
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PostSubject: Re: My story of PE and HELLP   Wed 28 May 2008, 7:14 pm

Hi there ladies,

I agree, it would be wonderful if we could sail through a subsequent pregnancy as blissfully unaware as before.
My personal feeling is that PE in what ever form it raises its ugly head is a thief.
It robs us of everything we have been lead to believe about pregnancy & babies sice we were little girls. We were told we would get fat, bloom, nest & clean cupboards before huffing & puffing a bit (which might hurt a bit but thats good & you soon forget the pain?!) before holding this huge bundle of joy nestling safely in your arms.

Never again will we dare to dream that dream.

What we long for now - is wait till I get past the next MW appointment, or till the next scan or I hope to get to 28 weeks & I will be.... or 30,32 weeks. Maybe I will get to try a VBAC wouldnt that be wonderful?

These were all things that we took for granted because seldom are we told this condition exists. Why? Because they dont want to scare us? Because we are already overloaded with other 'more important information'? Because some health care providers dont know?

More over than all that, sometimes this thief robs us of the end of our pregnancies, our babies and our control over any of it.

Knowledge & confidence to ensure that we are getting the appropriate care, at the appropriate time, from a suitably skilled professional are the obvious ways to stare this vile condition in the face.
But to do it again - that takes courage.

Wishing you all long, safe & uneventful pregnancies that bring you the joys it should.
Liz.
(Im off my hobby horse now!)
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