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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 Jen & Amelie's story

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jenkeast
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Join date : 2008-06-02

PostSubject: Jen & Amelie's story   Mon 02 Jun 2008, 9:15 pm

Hi, I apologise in advance that this will be pretty long, but I have never put all this down on paper and hope that it will help me and maybe some of you too. It is 1 year and 1 week since I gave birth to my first child, Amelie in May last year. In late 2006 I was 24 and it had taken us a year of trying (and 1 early miscarriage) to get pregnant, so we were really excited to be pregnant. I had a very difficult first trimester with bleeding at 5 weeks - we weren't sure whether I had miscarried until 7 weeks, hyperemesis until 12 weeks, and severe nausea until 16 weeks. After that had a pretty good second trimester.
At 28 weeks I started to feel unwell, but as I'd been told that as you enter the third trimester you feel a lot worse I didn't think much of it. I also had pain under my ribs on the right which I put down to the fact that that was the area in which I was constantly being kicked. At my 28 week bloods my platelets were low, and since I had an appointment with the anaesthetist that week I flagged it with her and was told that "anything over 100 is normal in pregnancy" - mine were just over 100 at that moment but I knew that was lower than my normal low-ish baseline of 160. At 29 weeks I drove from Manchester to London for the weekend, and on the journey home I hit traffic and by the time I wasn't even halfway home. On the journey I became really ill and had to stop and ask for help at a service station, I literally couldn't drive any further, my vision was dodgy and I felt unbelievably ill. My car and I were shuttled to my parent's house and after a long night's sleep I felt a lot better and put it down to tiredness. Around this time I also developed severe SPD and pelvic girdle instability.
At around 31/32 weeks my midwife noticed that my blood pressure was up from my baseline (although not out of normal limits). I am pretty sure that I mentioned the pain under my ribs around this point but nobody seemed to think it was a problem. I still felt very unwell - like I had flu and it was incredibly difficult to get out of bed each morning. I also had quite severe nausea again. I was having a LOT of braxton hicks and one night they were strong and regular every 3 minutes for 4 hours. At this point I had an inkling she might be coming early.
At 33 weeks I went away for the weekend, and felt really unwell the whole time - I had to sleep all afternoon both times and my face, chest, hands, & arms swelled - not that visibly, but very uncomfortably. The night we came home I woke in the night with epigastric pain and feeling like something was very wrong. We went into the hospital and my blood pressure was sky high. Blood tests didn't show anything particularly exciting as far as I remember so I was let home. The midwives started visiting me at home, thinking I might have pre-eclampsia, but my blood pressure was completely variable - sometimes totally normal and then sometimes quite high- high for me at least, which confusingly seemed to bother some midwives and not others.
I continued to feel increasingly unwell, and at 34 + 2 woke in the night again with appalling epigastric pain, which radiated into my back and up into my neck. I could not sleep at all but it felt very like food poisoning, and when I vomited the next morning and felt better I was pretty sure that was what it was. The next night was exactly the same - about 2am, up all night in agony and then vomiting the next morning and feeling better. Next day - fine, so pretty convinced it was food poisoning. The next night was the worst, woke again at 2 with APPALLING pain. Since it obviously wasn't food poisoning I thought I might have something like obstetric cholestasis so I called the ward and said that I wasn't sure whether to come in or not because I was in pain but not uterine pain. The midwife on the phone said to me "why are you calling if you aren't concerned" and implied that I was making a fuss about nothing. As this had been the attitude all the way through (hence why I hadn't sought care earlier) I nearly didn't go in but decided I couldn't cope with the pain (I have a major back problem so am used to being in pain but this was the worst I had ever experienced). Once I got to the hospital my blood pressure was sky high so the same midwife suddenly became very attentive. They then sent off some bloods and started to panic as my platelets were in the 70s. They gave me some pethidine which helped with the pain, and I managed to get a couple of hours sleep for the first time in days.
In the morning, luckily the pain had subsided, and I was woken by the consultant, who told me that they were going to take me straight round to the delivery suite and induce me, which shocked me as I was aware that I was very unwell but thought I would just be kept in for monitoring. The consultant was then followed by the consultant anaesthetist who told me that since I had HELLP syndrome there was a significant likelihood I would get much worse in the first 48 hours after the birth and that I might have to be admitted to intensive care. I was also told that I would not be able to have an epidural (didn't want one anyway), and that in the likely case that I had to have a caesarean I would have to have a general anaesthetic (my worst birth nightmare - I wanted a water birth on the birth centre).
I was then taken round to the delivery suite and after a couple of frantic calls managed to get my husband and mum present. I was given steroids to try to mature Amelie's lungs (I think I had a dose the night before too) and examined and found to be 1cm dilated already. I was given the prostaglandin gel and started contracting immediately. 6 hours later I was 2cm dilated and was given another dose. Overnight I still had pretty regular contractions and was managing with TENS and being very mobile.
At 8am I had just managed to fall asleep - by this time 5 days with no real sleep, and suddenly the room filled with people and it was announced that they were going to break my waters. When he examined me I was still only 2cm dilated and so he tried to break my waters with the hook, and was unable to so he used a fetal scalp electrode. I cannot describe how painful it was, even with gas and air - it took him ages and he totally ignored the fact that I was screaming. It was like being raped, I still have flashbacks. Eventually he managed to do it and immediately my contractions were unbelievably intense, even with using gas and air really effectively it was pretty unbearable. At 10.30 I was only 4cm dilated and devastated as the pain was so unmanageable I didn't know how I would continue to cope. At 11.15 I suddenly needed to go to the toilet and jumped off the bed dragging all the equipment behind me (pretty funny in retrospect). While sitting on the toilet I thought "I wonder what it would be like if I had a little push", had a go, and suddenly realised I was in transition. At this point my husband said he was going to go for a shower and I told him quite clearly that he wasn't, and that I needed to push. No one believed me, but when I got back to the bed and examined me I had gone from 4cm to 10cm in 45 mins (told you they were intense).
I then started to push, but as I hadn't really slept for 5 days I would be having a massive contraction, pushing as hard as I possibly could, and halfway through the contraction just lost all strength in my body due to extreme exhaustion. Amelie was moving down but very slowly and 1 and a half hours and some scary decelerations later they were starting to get worried. Bizarrely they didn't seem worried about my blood pressure and my mum actually had to ask them to take it after I'd been pushing for 2 hrs. They got me into a million different positions trying to push and an hour later again decided to do an episiotomy. Amelie pretty much popped out then and they realised that she had had both hands on her face which is why she was so difficult to push out despite the fact that she weighed a hefty 5lb 9oz at 35+0. They also managed to cut through a blood vessel when they did my episiotomy and so I was bleeding out badly and was sewn up very quickly (and very badly, huge ongoing problems from this). Amelie was put on my chest but I had to ask them to take her away as I could see she wasn't breathing. It took them quite a while to get her breathing and she was grunting and recessing badly so they took her to the NICU and my husband went with her.
Pretty much immediately after she was born my liver pain came back with a vengeance. I was in so much pain and so tired that I could not speak sentences or open my eyes. I kept falling asleep for about 30 seconds and then being woken by the pain being SO bad. Despite repeated requests for pain relief - two nights before they had given me pethidine, they kept faffing about and took 6 HOURS to get me any pain relief. Also in this time they left me in the room on my own a lot, didn't monitor me, left blood all over the room and me sitting in a pool of clots and generally seemed like I wasn't important now that I'd given birth. In retrospect I feel like my life was in severe danger at this point and that I should have been in HDU, I didn't even have a midwife in the room. Eventually they did give me a dose of oral pain relief which did nothing. They then gave me another one and I don't remember anything from this point - apparently my sister arrived, I had a conversation with her, I was moved up to the ward (4 bedded bay), got a photo of Amelie etc. Don't remember a thing. Just before midnight I woke up and felt... fine!? got out of bed and fell over (I damaged nerves in my leg from the positions I was pushing in, took months to recover) and decided I ought to go see my baby as I knew the pain might come back. I went down to see her (don't remember this either) and then came upstairs and expressed some milk before going back to bed.
Anyway I could go on for another few pages about my postnatal care and Amelie's care in intenstive care (actually ICU and HDU was fine, special care was abysmal). I've really struggled physically and mentally since the birth and have suffered with post traumatic stress disorder and postnatal depression. Am better than I was but wondering if I'll ever feel normal again. Hope so, I apologise for the length, Jen
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Liz Pidgley
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PostSubject: Re: Jen & Amelie's story   Tue 03 Jun 2008, 3:27 pm

Hi Jen,

Welcome to the site. I am so sorry to hear your experience of pre eclampsia & HELLP syndrome. You clearly had a really rough time and Im not suprised to hear you struggle with its after effects.
I can't promise you will ever feel like the old you again but with lots of TLC & support there is every reason to believe you will learn to live with what happened in a less devastating way.

I have often said that these experiences, as horrible as they are, go to make up the 'decoupage' pictures of our lives.
This experience at the bottom of the decoupage is the worst imaginable picture but as time goes by and new experiences layer on top of it, the picture will change in to one that is more beautiful to look at.
There will be your beautiful baby girls birthdays (which may be tinged with sadness at the way she arrived but her delight & excitement will over ride that) Christmases and holidays. Peel away those memories and the same devastation is still there but the tapestries of life will have added new & vibrant colours that make the newer picture - just as beautiful just in a different way.

You have described utter grief that resulted in PTSD, when I was researching this topic I found a quote, that others will have heard me say to them, this is a normal reaction to an abnormal situation. I hope that everyone here will be able to support you through this really difficult time as every one of us here in one way or another has felt the wrath of this vile condition.
One thing I would really like you to hear if you hear nothing else, this condition was not your fault. There was nothing you did or didnt do that would have prevented this condition.

I truly hope that you will find the information & support you are looking for from us here.
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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