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Pre-eclampsia - How did it affect you ??

(25 Posts)
10oclocknews Tue 21-Feb-17 22:28:49

I am a student midwife, and I am preparing a presentation highlighting the Social, psychological and financial impact on women and families of a diagnosis of pre-eclampsia.

I know there are many of you on this site that may have had pre-eclampsia, and I just wondered if any of you may be happy to share if this complication affected you adversely during or after your pregnancy? I will likely use some of the feedback in my presentation, but it would all remain anonymous, so please say if you would be unhappy for your experience to be shared.

There are many academic journals that suggest that pre-eclampsia has a negative psychological impact on some women, but I feel a truer picture can be gathered by talking to women.

Any feedback is greatly appreciated.

thankyou x

BillyButtfuck Tue 21-Feb-17 22:49:04

Hello smile I suffered from pre eclampsia in the very last weeks of my twin (DCDA) pregnancy from 33 weeks onward. I had never before suffered from anything similar or high blood pressure. I Became very dizzy and had blurred vision for a while and one day woke up and I just knew something wasn't right sorry if that's super unhelpful.
I phoned ANDA and went in and my bp was super high, after being consistently good throughout the first 33 weeks of pregnancy.
I remember going in and doing a urine sample and the midwife looking at it and saying woah there's a lot of protein there. It was almost foamy and very dark. Sorry TMI.
They gave me some medication and I went home the next morning when my BP dropped below 135/85.
The next evening I was back in again, I had floating lights and the swelling was like something out of a cartoon. I had arrived at my dads in my size 4 flip flops and arrived at the hospital in his really big man sized slippers which were getting so tight that they had left marks in my feet and I walked around in bare feet. I didn't leave hospital until a week after the boys arrived at 36+6 so a total of 5 weeks.
In the weeks between being admitted to hospital and having the boys my blood pressure remained high but stabilised at around 145/90. It was such a catch 22 though for me, being in hospital and being woken up every 3 hours for readings stresses me out and without a doubt had an impact on my BP.
Eventually the pre-eclampsia stopped being manageable and I was induced, waters eventually broken and after a 21 hour labour I was taken to surgery for an Emergency CSection.
It took another week to stabilise my blood pressure properly, for that week they could keep it stable on medication but only for a few hours and then it spiked again. My tiny babies were ready to come home from NICU and SCBU before they would let me home.

It was really stressful, and scary and I felt like I had no control over my body. I wanted desperately to be at home, and I felt I'd have been a lot more relaxed at home - but I was trapped and I couldn't do anything about it.
I was also so so worried about my babies before I had them, those couple of weeks of testing and monitoring were terrifying. They kept saying if it didn't improve I'd be induced and I was petrified that they would be born too early and not do well.

BillyButtfuck Tue 21-Feb-17 22:49:35

Sorry I've rambled on abit there and probably not answered your Qs blush

user1481795553 Tue 21-Feb-17 22:54:59

I was diagnosed with sudden onset pre eclampsia at 32+6 weeks, my Bp was through the roof and my ds was in distress so I was rushed into hospital to be stabilized.
I was then told my ds would be born early and to be honest I shut down, I became serenely calm about it all. There was no emotion at all. I just let the Drs, surgeons and midwives get on with it.
My ds was born at 33+2 and rushed to Neonatal, without me seeing him during my section and it would be another 24 hours before I was well enough to see him. The sad thing is that I felt nothing, not a single tiny bit of love for my child because I couldn't cope with all the stress at the time and it was my saving grace as it kept my Bp some what stable and stoped me having a stroke.
At this point id spent 4 days in a trance like daze and no longer cared what happened to me because I was dying anyway.
The nurses came and updated me on ds regularly and gave me pictures. When they left everything hit at once and all I wanted was my little boy not a sodding picture.
The thing with pre eclampsia is that it doesn't just affect the mother, it affects the child and the father too. That night my dp nearly lost me and his ds, and my ds has long term health problems due to his prematurity and micro birth weight (severely small for his age).
It still haunts me today. I'm physically better but terrified of it all happening again( I have a 60% recurrence risk) and thus I am paranoid about not getting pregnant. I lay awake at night, running through the events that transpired and it knots my stomach.
My dp also struggles with what happened but all the counselling is aimed at me so there is little help for him.
In reality my next pregnancy with be nerve wracking, just waiting and hoping it wont happen again. I feel as though I will never enjoy the miracle that is pregnancy but I am thrilled to have a very close bond with ds even if I still feel guilty about not loving him at first.
There is much I have missed but I feel as though this would be a good start for you and feel free to share my experience for your presentation

user1481795553 Tue 21-Feb-17 22:58:16

Oh my Bp at its highest was 200/140. Was rushed for emcs at that point and Bp had been text book normal for my entire life untill that point and is normal now

10oclocknews Tue 21-Feb-17 22:58:36

Thankyou. You have highlighted many of the things I was looking for, so definitely not rambling. I think many women feel like you have described, very out of control and anxious. Sounds like you had a really tough time. Glad all turned out well for you in the end. Thankyou for taking the time to share your experience x

10oclocknews Tue 21-Feb-17 23:03:13

Thankyou User. That does sound completely terrifying. I have not yet come across a case of pre-eclampsia as severe as yours. Thankyou for sharing that. It is a real eye opener. I truly hope that you have a much smoother pregnancy next time round x

measles64 Tue 21-Feb-17 23:09:38

My DIL nearly died giving birth is pregnant again we are all quietly scared. It is the elephant in the room.

BeachysSnowyWellieBoots Tue 21-Feb-17 23:11:40

Place marking and happy to chat.

Had early onset preeclampsia and delivered at 31 weeks. I had a weird 'dry' preeclampsia and shrunk in size instead of swelling.... I had some aspects of HELLP syndrome and was very ill.

Like others, I didn't see my dd for over 48 hours and didn't feel anything for her. During my 10 days in hospital and for the time afterwards, I felt quite obligated to spend hours in the NNU but I was really unwell and didn't really have time to recover.

I was diagnosed with PTSD after about six months. I was constantly talking about my birth story, obsessively. I tried ad's but I couldn't really function with them.

My breakthrough came on her first birthday when somehow the fog lifted and I just got on with it....

It was horrible, really horrible....

Heathen4Hire Tue 21-Feb-17 23:30:50

At about 29 weeks my ankles were swollen. I would lie on the floor with my feet on the bed. The midwife referred me to an obstetrician who said she was worried that baby was small. Next thing I know, I'm told to give a urine test which found protein in my wee. This was at 32 weeks. So a bed was found and I was suddenly in theatre. Although the nurses and doctors did their best to reassure me and my DH, we were both shitting ourselves. I had never had surgery before. More than that, because I was overweight and because of a drug they gave me on the ward (I forget which, it's a blur) I had to have the baby under GA. I shook with nerves even as they put the mask on me, and I cried a lot. Husband felt he had no control over the situation, it was the worst day of his life.

I came round and felt very sore. There was a gap between knowing I had had a CS but there was no baby, as she had been wheeled up to SCBU. It felt like a bad dream, and that I hadn't been pregnant at all, rather it felt like having gallstones or an appendix out. It was weird.

My husband went to see the baby before me. He gave me a photo. I still have it, though it's very battered now. I was taken up to see her, but there was still a disconnect between us. My brain couldn't hack the fact I was a mum.

Then my body wouldn't pump milk, and the breastfeeding nurse was horrible to me, and even when we left hospital, (baby left six weeks later) I didn't feel bonded to her. I loved her, but there was a gap. I think I had ptsd but I'm not sure. It wasn't diagnosed. She had terrible colic too. I struggled.

The whole experience put me off having more children. My husband wanted more kids but I couldn't face all the interference again. He is disappointed. My daughter is now ten, and though I have now bonded with her, and would fight for her, it took a long time.

user1481795553 Wed 22-Feb-17 22:19:14

I've noticed that no one has put the financial implications on here. From our experience we found that pretty much everything we had bought for ds was useless. He needed smaller clothes, nappies, his car seat adapting, different bottles. This is not including tuning back and forth to the hospital for 4 weeks after I was discharged after a week. My dp had extra travel too due to visiting me while I was admitted. All in all the whole experience has cost us around £1500 and rising.
To give you some perspective ds has been through dress sizes from 2lb to 3-6 months, that's 7 sizes since birth, 5 more than we had prepared for and he is now 8 month old. We've had to re provide everything for him and after bills we have around £200 per month.

Glossolalia Wed 22-Feb-17 22:22:30

Hi OP,

I had pre-eclampsia and HELLP syndrome.

Could I PM you my experience? I'd rather not post it on here.

10oclocknews Thu 23-Feb-17 15:31:59

Hi. Thankyou for taking the time to reply. Looking back, do you think there could have been anything the healthcare team could have done to prepare you for the condition a little better, eg. Improved communication or better awareness or management of your condition??

BillyButtfuck Thu 23-Feb-17 15:43:08

Definitely. I didn't even know what pre eclampsia entailed prior to my diagnosis. I was under consultant led care and they checked my BP regularly through my twin pregnancy and always said it's common for it to be high carrying two babies but there was no expansion.

10oclocknews Thu 23-Feb-17 16:04:27

Thankyou Billy. This post highlights just how much healthcare professionals underestimate the long term issues associated with pre-eclampsia in terms of psychological wellbeing. x

BillyButtfuck Thu 23-Feb-17 16:11:32

I also assumed (because no one told me) that delivery would cure it. It didn't, I suffered for about 8 weeks postnatally

SquedgieBeckenheim Thu 23-Feb-17 16:15:47

I was diagnosed with pre-eclampsia at 34 weeks with my first pregnancy. I had been having symptoms - headaches and visual disturbances for 2 weeks prior to that, attended the assessment unit multiple times but told I was fine as my BP was still in the normal range. I normally have low BP, so for it to be in the 130's/90's it was high for me! It was at 34 weeks midwife appointment, when my fundal height was only 30cm and I was sent in for a growth scan that the pre-eclampsia was diagnosed.
I was admitted to hospital that day, and induced 4 days later. DD was born with her weight on the 3rd centile as she was IUGR due to the pre-eclampsia. She was small, and had prolonged jaundice but otherwise healthy. She spent 2 weeks on NICU due to struggling to feed.
Approximately 4 hours after giving birth I had an eclamptic seizure and developed HELLP syndrome. I was in intensive care for 24 hours while they struggled to control my BP. They didn't start magnesium sulphate until AFTER the seizure! I then was kept in for 5 days.
In terms of ongoing issues, my BP went back to normal fairly quickly. I, and DH (who witnessed my seizure), struggled to come to terms with how everything had gone. I still think I had some level of PTSD but this has never been diagnosed. We were both very angry with the lack of care I received from the hospital, as the Consultant who induced me admitted that if I had been diagnosed quicker the seizure would have been avoided. It took 18 months to even consider whether we'd have a second child, despite always wanting two. I am now 36 weeks pregnant with number 2, and both DH and I have been on edge the whole pregnancy worrying about pre-eclampsia occurring again, especially as I have symptoms again!
DD is now a happy, healthy, 2 and a half year old, but thinking of the circumstances of her birth and how close we both came to not making it still scares me!

SquedgieBeckenheim Thu 23-Feb-17 16:32:49

Oh, and in terms of financial implications - yes to extra clothes! And a lot of gifts people had bought us didn't fit in the right season. We also had to purchase our own breast pump to use at home as the hospital couldn't lend us one. Travel and parking costs to and from the hospital, although we were lucky to live nearby. DH had to come home from abroad early. Starting maternity leave early.
All these are as unavoidable as the pre-eclampsia though. It's no-ones fault as such.

There does need to be more psychological support for families - I was offered nothing in terms of counselling etc. No support was offered on the ward - the midwives were too busy. The NICU nurses tried, but it's not their job.

Heatherjayne1972 Sat 25-Feb-17 16:21:24

Had pre eclampsia about 4 days before ds2 was born by planned c-section. And stayed in due to high bp for another 8 days
Was horrendous , at one point the auxiliary woman told me I might die and that they were waiting for me to go into a coma
I had a doctor - later found out it was the specialist, wake me at 3am by prodding my stomach and asking if my children had the same father (they do)
No follow up /counselling after I left I was just told to go and see my gp

welshmist Sat 25-Feb-17 17:00:05

And when you do get home after all the trauma and are being checked again and again and given meds. for high bp which need to be continually adjusted as your body returns to normal because you can pass out with low bp if the dosage becomes too high, frightening when you are carrying a baby around to think you could just faint with them in your arms.

user1481795553 Sat 25-Feb-17 19:50:00

Worrying isn't it welshmist, my Dr saw me for my meds review and she had no idea why I was there. She took my Bp, said it was perfect and then put me on the meds for another two months. Safe to say I changed my Dr to a new one who was very alarmed that I was still on the meds and weaned me of them over two weeks.
What was never explained to me is that your body can become dependent on the Bp meds and then you're on them for life, my old Dr was very irresponsible

PositiveAttitude Sat 25-Feb-17 20:11:50

I had early onset Pre-eclampsia at 26 weeks and did not have a clue what was going on.

One community midwife refused to come and do my blood pressure because she said I was too early for it to be serious when my it had raised the first time.
Another midwife called round by chance (she was a neighbour and came to visit, not as a midwife) and my face had blown up like a balloon and I could hardly see out of my eyes. She took one look at me, took my blood pressure and put me in her car and took me straight to the local hospital.

I was never told of the serious implications of it and suddenly found myself being transferred from our small island hospital to the mainland city hospital. I remember overhearing a Dr and nurse discussing plans for if I needed a CS in transit which freaked me out. During the transfer they kept asking if I had a headache - I always said no despite my head feeling as if it was going to explode because there was no way I wanted a CS in the ambulance.

I had a CS within a few hours of arrival at the mainland hospital and spent the next 4 days in intensive care, which I dont remember much about.

Unfortunately DD died at 8 days old. Pre-eclampsia changed my life, changed me as a person and I will never be the same again. I went on to have 4 healthy children, but pregnancy was always a scary time for me, especially the next pregnancy. I didn't have a birth plan - I gave my midwife a plan for what I wanted if I got pre-eclampsia, basically it was a plan on what I wanted to have done if I died. There was no way I wanted to survive if the second baby was going to die just so that I could live.

That's how I have always seen DD1's death - she died so that I could live, she had to be born early to save my life and I have always felt guilty about that.

I'd be happy for you to message me if you want more info.

Archimandrite Sat 25-Feb-17 21:10:27

I had high BP from the very first antenatal check and it continued to be high throughout the entire pregnancy.

I felt that my pregnancy wasn't properly monitored.

At 37 weeks I started feeling very ill with headache/dizziness/blurred and double vision and the GP paid a home visit. He informed me I was just "Full of baby" and would feel better when I'd given birth.

I ended up going to A&E later that day as I felt something was wrong and had an EMCS under GA a few hours later. DD took 6 minutes to breathe independently and I ended up in special care. When I woke up DD had been taken to PICU with repiratory distress after having been discovered in the hospital nursery blue and twitching. She remained in PICU for 10 days.

I had severe PND and felt unable to bond with DD. This was in 1985 and I was not encouraged to touch DD while she was in an incubator. I felt physically and mentally ill and in hindsight think I had some sort of post traumatic shock after the time before/around and after the birth.

I had anti-depressants for years after the birth and episodes of depression despite them. I didn't enjoy the first few years of DD's life and was highly anxious (anxiety centred around her health ) and miserable.

I feel that my BP was managed poorly throughout the pregnancy, resulting in an emergency situation at 37 weeks that badly affected both DD and myself. My BP wasn't checked after I left hospital. It was only by chance that I was found to have essential hypertension a few years after the birth when I attended the GP about something totally unrelated. I have been on medication since that time (for the past 27 years).

I believe both my GP and the hospital were not well informed about this life-threatening complication of pregnancy. I hope medics are more on their guard about it now.

Am happy for my experience to be shared if it's of any use.

paxillin Sun 05-Mar-17 00:42:17

My pre-eclempsia was late onset and I had very low blood pressure prior to pregnancy. I had proteinuria early on, so the warning signs were there.

It was terrifying and meant the last bit of pregnancy was full of worry and clinic visits rather than anticipation and baby shopping. I felt a bit "cheated" out of the last weeks of pregnancy, but otherwise did not suffer psychologically.

dancestomyowntune Mon 03-Apr-17 09:34:38

I am currently in hospital with preeclampsia and have been here since thursday. My last baby was born at 30 weeks, two years ago, by EMCS two weeks after being admitted so I know the drill and I am terrified. I didnt want another baby, but fell pregnant after having a mirena coil that apparently appears to have fallen out and didn't find out I was pregnant until I was 12 weeks gone. Now, at 27 weeks, it's looking increasingly likely that I will be having another premature baby.

The worst thing is I have 5 other children at home, and they are worried about me and the baby and so I just feel a constant feeling of guilt and anguish. And I know that after spending six weeks in neonatal with our last baby how stressful that is going to be to go through it all again. My husband has been fantastic, but I know he's worried. We all are. And I feel awful. Poorly and headachey and I just want this to all be over.

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