Advice needed!!! Preeclampsia

[Bea82]

Hi,
I'm new on here and have joined to get as much info as I can! Mine is a long story but I will keep it short... I have recently lost my first baby due to severe early onset preeclampsia, hellp syndrome and IUGR. I had an emer c-section on 23rd Sept 09 at 26 weeks. My daughter lived for 5 days but at weighing only a pound the fight was too big. Ihave been very ill and this came on so suddenly and severely there was nothing that could be done apart from delivery. I was given mag sulphate which helped. This has been a nightmare and my partner and I will never get over losing her but we really want to try for another baby. My consultant has given us the go ahead for Jan as my liver/kidny function is now normal. I would be really grateful for any advice...has anyone had a similar experience and gone on to have a normal/or slightly better pregnancy? Obviously I know my chances of getting it again are high but I am hoping that if it did happen again it would be later and less severe. Consultant has also told me to take aspirin from conception, has this helped anyone?? Any advice at all!!!!

Thanks xx

Hi

I am sorry to hear about your little girl. I had pre eclampsia in my first pregnancy. It was nothing like as severe as yours but when I found I was pregnant again I wanted to find out everything I could about it. There were two websites that I found helpful. One is ran by a charity called APEC. I can't remember what it stands for but they were set up to provide advice and increase awareness re PE and HELLP. They were very helpful in providing advice re the level of care that I could expect second time round. The second was ran by Liz Pidgely and I think was called pesupport.friendhood.net. It had a chat room where there were loads of other people in the same boat. Liz is also a mine of information in her own right. I used to be in the chat forums in both sites but haven't been on either for quite a while now.

In general, I understand that if people get PE again that it tends to be later and less severe. Many people don't get any symptoms in successive pregnancies. I had symptoms from about 32 weeks in my first pregnancy although it wasn't diagnosed until 34 weeks (I stupidly thought that crushing headaches and double vision were a normal sign of late pregnancy). I was lucky and didn't develop any signs of PE second time round.

Good luck.

Thanks for your message. It's good to hear that you didn't get it again. I have been on APEC etc. Just wanted to hear about personal experience as well, it gives me more hope!!

Hi Bea

I had PE with my first boy. He too was born early - 30 weeks and also suffered IUGR. My PE developed into Eclampsia though and I had the fit, went into a coma and had a stroke. Was pretty scary at the time, more so for my family who where told if I wake up I won't ever walk again I am thankfully fully recovered, still effects me emotionally and DS was at the time fine and pretty healthy just very small - he spent 4 weeks in hospital - he does suffer learning difficulties now.

When I eventually fell pregnant with my second boy and at 20 weeks I was sent to a specialist hospital in Bristol (90 min journey!) for a specialist scan which told me my chances of developing PE again, it came back quite high but this ensured I was monitored VERY closely.

Anyway as it turns out I didnt develop PE with DS2 and he was born full term

I am pregnant again now, and although I am only 6 weeks, if I get to 20 weeks I will be requesting the specialist scan again from my GP. It's something which is run by APEC so no GP should have a problem with referring you. They measure the blood flow in the placenta.

Sorry to hear about what happened to you. It's great to hear that it didn't happen to you again. I will ask about the scan, is it the artery doppler one?? I think I may have had that this time when I was in hospital, not sure though so I will find out. Thanks

So sorry to hear that you have had such a sad and hard time.
I suffered with PE in my first pregnancy. Consultant was called when DD was discovered to have calcium deposits on her liver and bowel and my 20 week scan. Although it wasn't identified as PE straight away, it did mean I was closely monitored with weekly appointments and scans. DD stopped growing at around 25 weeks and I developed full blown PE at 28 weeks. Luckily, I was already in hospital so I was rushed straight down for an EMS. I had liver and kidney failure but made a full recovery. DD was 1lb 10oz at birth and spent 12 weeks in SCBU as she was very slow to gain weight - only 4lb 4oz when she came home - but is now a very bright and feisty 3.5 year old!!

My second pregnancy was plain sailing in comparison though I saw the same consultant for an initial appointment at 12 weeks and then every fortnight from 20 weeks onwards. I took the aspirin (but I can't really remember how long for...think it might have been until about 36 weeks). DS clearly didn't want to leave the comfort of his safe haven and I was induced at 41 +10 weeks...and he still took another 3 days to arrive!!!!

I remember that my consultant told me that if you had severe and early PE in a first pregnancy, it is actually more likely to re-occur in a second and can even be worse. However, you would be much more closely monitored which gives some reassurance. And I'm proof that it doesn't have to be the way!

Good luck

Thats brilliant, can I also ask you about your 2nd birth? Did you have a VBAC? Worried about having a baby so soon as have read about uterine rupture. My consultant says its fine as long as there is a year between births but Im still worried! Did you have quite a big gap? I think I'm neurotic now!! Going to be scared of every possible thing going wrong!

Hi I had pre-eclampsia in my first pregnancy but no where near as bad as yours. Diagnosed pre-eclampsia at 34 weeks and had emer section with dd at 36 weeks, her umbilical cord was completly black so it is though i probs had pre-eclampsia for couple of weeks before.

Anyway dd is now 4.5 and i am 31 weeks pregnant again. I have developed gestational diabetes at 26 weeks pregnant this time so am being kept a really close eye on. So far though fingers crossed my bp is behaving itself.

A freind of a friend had severe pre-eclampsia and the baby was born at 27 weeks and lived for 2 weeks. She has just given birth to a bouncing baby girl full term and no pre-eclampsia and this was 15 months later so there definitly is hope.

Good luck x

Hi Bea82
I too had SEVERE pre-eclampsia in my first pregnancy. Sadly, my DD was still-born at 36+3wks pregnant in June last year
The PE came on very quickly with me (although my BP had been slightly raised throughout the pregnancy) and I had no warning signs until I suffered placental abruption.
I unexpectedly became pregnant again in November last year and like you, was very worried and scared about the PE happening again. I started taking labetolol (to keep BP under control) and low-dose asprin following my first consultants appointment at 12weeks.
I was very closely monitored during the pregancy and had regular growth scans and dopplers measuring blood flow across the placenta.
From 36 weeks, I had daily BP and urine checks together with CTGs.
Thankfully all went well, and although I was originally booked in for an induction at 37weeks, we managed to hold off until 40+3wks.
My beautiful baby boy is now 15wks old and sleeping peacefully upstairs
Good luck

Hi,

I am so sorry to hear about your daughter . I remember the rawness of the first months and I also remember feeling desperate to have the hope to be a mum again soon, but the fear of trying again as well.

My first son was stillborn just over 4 years ago at 24 weeks exactly due to severe preeclampsia and HELLP syndrome. He died 2 days previously because it wasn't caught in time . I think I started to get the signs from about 22 weeks but wasn't aware, and nobody seems to realise that you can get it that early (GPs etc). I had had high BP from about 14 weeks on.

I had a preconception meeting like yourself a few months later and was given a plan of care for a next pregnancy.

I didn't have a C-section but was advised to leave it 6 months to give my body chance to normalise. It then took another 6 months to conceive so I found out I was pregnant the week before his first birthday. I took asprin and the plan of care was followed carefully - with the consultant that had made the plan seeing me quite regularly. My BP remained stable around 130/80 the whole time - but then suddenly went up overnight at 29+5 and I had 2+ of protein so I was admitted for a few days and given steroids to mature tha baby's lungs. I was seen every 2 days for a few more days but then admitted again with the familiar chest pains from HELLP syndrome. Kept in a weekend and then discharged for one day to be seen in assessment daily. Only managed one day of this and then was back in hospital that evening. After blood tests they decided to do a C section there and then and DS was born at 31+3. He was obviously early but he cried very quickly after he was born and his 2nd Apgar was 9. He was in neonatal for 5 weeks but he was healthy and his stay was very uneventful. He's now a very bright, healthy and gorgeous 2 and 3/4 -yr-old.

In April this year, I had a very big surprise when I found out I was expecting again. We were understandably worried and scared at the prospect, expecting to (at the very best) have a premature baby. However my BP has again remained stable, but this time I am at 36+3 today and no signs of preeclampsia yet . Two weeks tomorrow I have a planned C Section and I am now really hoping to get through it and have my baby (a DD) without any signs of it.

Sorry that was long but I hope it helps you to have some hope. I think they are so much more careful with you in future pregnancies and I found everyone was very alert to the possibility that I could get preeclampsia again at any time.

I got a lot of support from the SANDS forum, but it is out of action at the moment. There are however hundreds of us on here. Please come and join is when you feel able. There's also a TTC/ next pregnancy /new baby section which has got me through.

Thank you so much for your message, it has made me feel better about it. Especially since you did get it again the second time but still had a healthy child in the end. Glad to hear that all the checks etc make a difference. Great news that you have also got so far in your current pregnancy and wishing you the best of luck.So sorry to hear about your first baby, its terrible that so many lose their lives because of this. Thanks again x

Hi Bea82

Apologies for posting and running last night .... bed was calling!!

There is a gap of 2.5 years between my two. Too be honest, I couldn't have faced it before then - suffered with PND for about a year after DD was born and couldn't imagine coping within another prem baby cos I was so sure that's what I would have.

I was so neurotic second time round, nervous at every scan and check. Had a couple of stressful weeks round about 22 weeks - placental blood flow not good and not much amniotic fluid, both of which I had I'd also had first time. But everything settled and we were both fine. Can't sing the praises of my consultant enough...he was bloody fantastic during both my pregnancies.

Did plan a VBAC for the second and tried really hard. Was induced using a balloon inserted in the cervix to assist dilation (much gentler than the hormone inductions but also much slower - and had never been done in my hospital before!!) It was a partial success and kick started contractions and got me to 3cm. But that took 24 hours. Had to wait another 24 hours for a free bed in delivery to have my waters broke. And another 24 hours of labour but still only 6cm dilated!! Unfortunately DS then tucked the cord under his arm and every contraction cut off the blood supply and I was told it would have to be a CS after all.........gutted is not the word. My epidural was topped up and I was taken to theatre and prepped. My (fantastic) consultant said he'd just take another quick check and in that shor space of time I'd got to fully dilated and DS was (finally) delivered using forceps!! So not ideal but I got there in the end.
I think that as long as it is properly managed, a VBAC is perfectly safe, even in your case where you may be only looking at a years gap.

I'm sure you've got a lot to get your head around at the moment but you will know when it feels right.

Thankyou everyone for your messages! x

hi there, very sorry to hear about your little girl.

Just to give you another story... I had pre-eclampsia with DD and had an EMC with her at 38 weeks. She was small, but fine.

When I got pregnant when she was only 11 mo I was very worried about getting it again. I was given asprin and extra scans to check the placenta development. DS was born healthy by vbac on his due date with no pre-eclampsia in sight.

good luck

xx

So sorry for the loss you have had .

I had PE and HELLP syndrome in my first pregnancy. I had dd by Em section at 32 weeks, IUGR and quite fragile, I was very ill. I'd probably developed it from around 30 weeks in hindsight.

I'm now 36+ weeks in my second pregnancy. I was advised to take 75mg of aspirin from the day that I got a positive pregnancy test. I had uterine artery doppler scans at 23 weeks and I've had a growth scan every 2 weeks from 26 weeks. So far I'm well and everything seems fine. If my uterine artery dopplers had been unfavourable then they would have increased my aspirin dose to 150mg.

I was quoted a risk of 20% of recurrence in a second pregnancy but they were unable to say at what gestation it was likely to happen again.

Reading this thread has brought back a lot of memories for me but it is heartening to see how many of us have had second pregnancies without PE.

Best wishes for the future. x

Hi All
I had pre-eclampsia with my little boy who is now nearly 5 I remember going for check up on my due date, and she sent me in saying I had it! but id been fine two weeks before can happen so quickly, Being 19 at the time I didn't really see it as being dangerous I thought id just gotten extra fat towards the end and they didnt really tell me anything!
I'm ready to have another little baby now :), would like to know alot more about it though!
My mum had it really bad when she had me but never had it again and had two more.
I actually have to get pregnant 1st though which could take a while as iv only just had my mirena removed!... so if any one has any good advise on both pre-eclampsia or the mirena? would be great

Hi Bea,

I, too, had pre-eclampsia which resulted in an emergency CS at 26 weeks. Emma lived for 8 days. I was in intensive care for 5 of those days.

BUT, that was 21 years ago and I now have 5 healthy DCs. Eldest DD was born nearly 3 years after Emma (after 4 miscarriages, too). I was on bedrest from 31 weeks, she was born 10 days early after being induced.
Next daughter was born 5 weeks early after being in hospital for 5 weeks, but she was ok. Others were fine too, although always very carefully monitored and they would not allow me to go any closer than 10 days to my due date.

You are right, you will never forget your loss, but you will get very good care through the next pregnancy.

Oh yes, I also meant to say that I took the aspirin from 3 months prior to conception each time. (after the miscarriages - apparently the miscarriages were my body rejecting the pregnancy due to the first one and aspirin was given to me to stop that happening. It worked!!)

Really hope it all goes well for you next time.

I developed pre-eclampsia in my first pregnancy, started getting symptoms at around 28 weeks. I was on bed rest from 30 weeks, and DD had to be induced when I was 34+4, she was born 24 hrs later. I was very lucky, she only spent 24 hrs in SCBU, she weighed 6lb12oz, and did really well. She does have some learning difficulties, possibly due to her early birth, but she is now nearly 13 yrs old!

I didn't have pre-eclampsia with DS1 or DS2, but this time, with dc4, I have some symptoms (protein + in my urine, last sample was ++, blood pressure slowly creeping up, am currently 33+5, but am being checked more regularly now these things are starting to happen). I'm sure this baby will be fine.

I developed it severe at 33wks in my first pregnancy, my DD was born at 34+2 by EMCS weighing 4lb6. She was fine, but in SCBU for 2weeks to bulk up. Compared to the posters story and other stories here, we were lucky though it was horrible to go through at the time.

I'm now 4months into second pregnancy, consultant not adviced aspirin but having additional growth scan at 28wks and fortnightly BP checks. My consultant said that its 50/50 as to whether I'll get it again so just hoping for the best. As with all the other stories here, seems that severe PET comes on extremely quickly. I ignored initial signs such as visual disturbances, major swelling and also had painful joints (which for me was caused by high levels of uric acid found in my blood).

Aiming for a VBAC but open to the idea of a possible ELCS.

Might be worth suggesting investing in a home BP monitor (not cheap, around £80 for a decent one from Boots). My partner has one to monitor his hypertension. I used it throughout my first pregnancy, when I discovered my BP was 140/90, I immediately rang the ANDU and they told me to come in right away.