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HELLP - 60% chance of reoccurrence

(8 Posts)
cammybear Fri 31-Jul-15 10:52:45

Hi everyone
This is actually a post on behalf of a friend. Last month she went through a hideous experience, losing her daughter at 22 weeks when she developed HELLP (then a three day labour, internal bleeding, intensive care - just awful). Thankfully she herself is now safe, but was told on Wednesday that the risk of HELLP occurring again in a further pregnancy is 60%. Can I ask for your honest advice - how high is this? It seems extremely high to me. Does it usually happen later on in a second pregnancy? Or maybe there are no 'rules'? Does anyone have experience of having lost a baby in HELLP so early, being given such a high chance of reoccurrence, and then going on to have a healthy baby? Sorry for all the questions.

The whole thing was extremely traumatic. It is now going to be even more difficult because I have just found out I am pregnant (8 weeks) with our first. We haven't told anyone and we are completely over the moon, but we obviously want to tread carefully here. She told me last week that she just can't be around pregnant friends at the moment; it's too hard. We are thinking of waiting until after her due date has passed before telling anyone. A good move? I am new to all of this - pregnancy, dealing with HELLP (which I'd never heard of), everything. All advice greatly appreciated!

lilac3033 Fri 31-Jul-15 12:02:35

My sister had HELLP when she gave birth in April. Luckily she was 39 weeks and it was caught early, so my sister and niece are fine. She was told she had a 50% chance of getting it again. I've read odds as small as 33%, but still it is a big risk. I think it is unusual to get it so early in pregnancy though. The difference will be that they will keep a much closer eye on her in future pregnancies because of her risk. It is a big risk.

Depending on when this happened to your friend you might be showing before her due date comes. Give her some time. Maybe do it by email so she can process her emotions privately. My cousin had a stillbirth (at home!!) about 3 weeks after my niece and DD were born. My sister and I agreed to keep all baby stuff off Facebook for a good month to 6 weeks, even now we keep it to a minimum. Obviously it is a different situation but I think the timescale is sensitive. Unfortunately you can't protect them from everything.

cammybear Fri 31-Jul-15 18:29:57

Thanks lilac3033, that's helpful - especially what you said about it being unusual to get it so early. Does anyone else have any experience or wisdom on what the chances are for second pregnancies when it happened so early the first time around?

I am not a big online sharer and won't be putting photos of my baby on facebook, but it's useful to know what you said about email. She was due beginning of October and is planning to come and visit end of October so I'm now thinking maybe I should tell her after their due date but before their visit, so she can process a bit and decide if she still wants to come. It must be so painful.

Thank you very much!

PositiveAttitude Fri 31-Jul-15 18:47:55

I had an emergency CS at 25+5 for HELLP, was in intensive care for a week and was lucky to survive. DD1 lived for 8 days.
I was told my chances were really high of re-occurrence, (not given a %, just told it was high risk) but was told that I would likely get further through the next pregnancy before the problem got so bad.
I then had 4 miscarriages (sorry, not trying to scare your friend), but this was because, apparently, my body was rejecting pregnancy because it was a safety mechanism to stop it happening again. I took low dose aspirin, which helped this issue.
When I was pregnant again I was looked after VERY carefully and had appointments very frequently. It was reassuring to get to 28 weeks, then 30! I was in hospital from 30 weeks but did not have DD2 until 38 weeks. (induced)
DD3 was born at 34 weeks (induced again) after being in hospital for 9 weeks.
DD4 was born at 38 weeks (induced)
DS was born at somewhere around 38 weeks, naturally (the morning I was booked in for an induction)

Congratulations on your pregnancy. I can really understand your reluctance to tell your friend and I have no idea how she will react. For me it was weird, some people I accepted knowing about their pregnancy and others I found really difficult. It was not a logical thing. But I would urge you to tell her sooner rather than later so that she does not feel that you have kept it from her. If she finds it difficult please don't take it personally. She will not mean to hurt you in any way, but she might find it just too difficult to accept your good news.

PositiveAttitude Fri 31-Jul-15 18:52:06

I think its a good idea about sending an email to tell your friend of your pregnancy. Explain that you are sending it to her so that she can process the information in her own time and not have to react face to face. Perhaps put a subject such as "sensitive news" or something, so that if she is just not able to cope on that day with even reading it she can put off opening the email until a time when she is ready to take it in.

cammybear Fri 31-Jul-15 21:48:14

Thank you so much PositiveAttitude - this is so helpful as it sounds like quite a similar situation to my friend's. I feel quite teary hearing your story actually - and how wonderful that you now have beautiful children with you. The bad and the good is exactly what I wanted to know, to support her better. She has been told to wait 6 months before trying again. It's useful to know that the chances of it striking again are high, but that there is some hope.

I don't really want to tell anyone about my pregnancy until 20 weeks. Are you saying that you think it would be better for her if I said sooner? Her due date would be around 18 weeks. She will be able to work out that we have already met and chatted whilst I knew I was pregnant, but she is so wonderful she will be happy for me. I am just concerned about what makes things easier for her - but maybe this is just a 'time' thing... Are there any other ways I can support her (especially when the due date comes around?) Flowers? I never know what to ask - I don't want her to think we've forgotten or don't care, but don't want to pry.

PositiveAttitude Sat 01-Aug-15 09:02:26

You sound like a lovely caring friend.

I can understand you wanting to wait to tell her and also to wait until after her due date, but can I warn you that I seemed to suddenly have a "pregnancy radar" in my brain after it happened to me. I seemed to be able to tell when friends/randoms were pregnant all around me. If she suspects it could be hurtful to her that you have not spoken with her about it.

I can only tell you from my point of view and you don't need to take it onboard, but I think what would have worked for me would have been to have been told as soon as you can. Tell her that you are not telling others until 20 weeks - she will probably appreciate the time to get used to the idea before everyone else knows your news. She will not want to dampen your excitement, but she will also be very overcome with her own grief and this may come across as her being upset with you. (please dont take it personally)

Since posting my message yesterday to you I have been thinking about the people who I seemed to accept the news from better than those that I didn't and I do believe that if I thought that the person was thinking of my feelings and was gentle with me was the best. The worst was the person who said "I am pregnant. It's been 6 months since your baby died. You are not still upset are you? <sigh> well, life goes on for everyone else, so get over it!" Oddly enough we are no longer friends! hmm

Some days will be better than others for her. One day she might be able to see you, discuss your pregnancy and be excited for you. The next she might feel that she cannot even see you. I am sorry!!! i know it will be hard for you- I am just trying to warn you. If it is possible for you, just be a friend. Send texts to let her know you are thinking of her and you understand that she is finding life hard.

I am happy for you to PM me over the coming weeks/months if you are concerned about your friends reaction at any time. smile

cammybear Sun 02-Aug-15 13:06:27

Thanks so much, it's all so helpful. I will definitely message you over the coming months if I need to. I'm definitely not worried about how I feel - I understand it must be really hard. It's more about being sensitive to how she feels, and of course helping her through (not saying she will 'get over it' but helping her to get to a point where she does not feel the terrible sadness she feels at the moment).

Thank you so much for your generosity with your experiences and your advice - I truly appreciate it.

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