HELLP Syndrome – what is it?

What is HELLP Syndrome?

Most people have heard of Pre-eclampsia; I haven’t met anyone – other than a medical professional or a fellow survivor – who has heard of HELLP Syndrome.

There are limited information on HELLP Syndrome online.   The NHS website describes it as a complication of Pre-eclampsia.  However, experts are unsure if this is the case.

The NHS website has only one small section outlining what HELLP syndrome is.

One of the best sources of information that I have found has come from the Pre-eclampsia website.  This is the source I have used to outline what HELLP syndrome is for this post.

So what does HELLP stand for?

  • H (hemolysis, which is the breaking down of red blood cells)
  • EL (elevated liver enzymes)
  • LP (low platelet count)

What is it?

HELLP syndrome is a life-threatening pregnancy complication which usually occurs during the later stages of pregnancy, or sometimes after childbirth.

Symptoms?

This is the important part.  The physical symptoms of HELLP are very similar to pre-eclampsia and sometimes it is misdiagnosed.

  • Headache √
  • Nausea/vomiting/indigestion with pain after eating √
  • Abdominal or chest tenderness and upper right upper side pain (from liver distention) √
  • Shoulder pain or pain when breathing deeply √
  • Bleeding
  • Changes in vision √
  • Swelling √

Signs to look for include:

  • High blood pressure √
  • Protein in the urine √

The symptoms marked √’d I experienced in the month leading up to being admitted to hospital.

A lady has tears as she looks at the camera.

Doctors confirmed that my HELLP syndrome developed straight after the birth of my children.  However, I displayed many of these symptoms during pregnancy.  This demonstrates the difficulty in diagnosing this condition, even for experienced, highly-qualified medical professionals.

HELLP syndrome has a frighteningly high mortality rate; some of the reasons for which are liver rupture, stroke or kidney failure.

I want to point out that these can usually be prevented, providing they are caught in time.  Which is the reason that raising awareness of this is so crucial.

If you or someone you know has any of these symptoms, please see your healthcare provider immediately and share your concerns.

Treatment

HELLP syndrome cannot be treated.  Giving birth is the first step to ensure the best possible chance for mother and child.

Hospital admission is a must and the doctors will treat the side effects until your body recovers from the condition itself.  For example, I was on blood pressure tablets for a while after I gave birth until my blood pressure returned to normal.  Blood transfusions may need to be carried out to increase the platelet count for the mother.

Future Pregnancies

Sufferers from HELLP Syndrome are at greater risk of getting it again during subsequent pregnancies.  I was told that were I to have more children, my pregnancy would be treated as high-risk with more frequent monitoring to mitigate that risk.  But I was not offered counselling to deal with what happened to me.

It is worthwhile noting, as per my previous post, that I ended up organising my own counselling.

On hindsight I think this should be offered to everyone that has been through this life-threatening condition.

I have no plans to put myself at risk by having more children.  When I tell people that, they frequently say I will change my mind when the boys are older.  That wont happen.  I have two boys and I survived to enjoy the journey of being their mother.  I have no intention of leaving them.  Although, I would love to have more, I will not risk my life for it.

There are no charities set up dedicated to HELLP syndrome alone.  If anyone knows of any I would be grateful if you could leave the link in the comments. The Preeclampsia Foundation do a great job as part of their wider campaigning.

When I started researching for this blog, I was struck by how many people have been affected by this.  Statistics suggest that 5-8% of pregnancies in the US develop Pre-eclampsia, of which 15% develop evidence of HELLP Syndrome – that’s as many as 48,000 women each year in the US alone.  There are many blogs and Facebook pages dedicated to survivors.  Their stories are horrifying, some much more so than mine.

There are also, sadly, many stories where the mother and/or child did not survive.  When I think of this I feel petrified.  My husband has admitted to me there were a few moments, where he thought he would be a single dad and I would not survive. I can’t imagine how this must have felt.

Read my HELLP Story here.

HELLP Syndrome can have happy consequences. Two babies sleep curled up together on a fur blanket

 

Do you know what HELLP Syndrome is? Would you know the signs and symptoms?
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61 Comments

  1. 23rd August 2016 / 1:46 am

    Oh wow, how scary, I admit I had never heard of this. Thank you for sharing your experiences! Very thankful your story had a happy ending…!

    • Double the Monkey Business
      6th September 2016 / 7:20 pm

      Thank you for reading hun x

  2. 27th May 2016 / 10:19 am

    Not sure what’s more terrifying…the syndrome itself or the fact that there is clearly no public information or awareness about it. Thank-you for raising awareness. x

    • Double the Monkey Business
      27th May 2016 / 3:08 pm

      I know, it is frightening. I don’t know many people who have heard of it. x

  3. 15th April 2016 / 3:04 pm

    I have heard of HELLP syndrome, but didn’t really know what it was. Scary stuff, indeed 🙁

  4. 17th March 2016 / 6:00 pm

    This is so very interesting. Looking at the symptoms I think I may I have HELLP syndrome while I was pregnant and thereafter as I did lost a lot of bleed during my labour and also has had blood transfusion and was on the blood pressure tablets too, but it was never identified. Very interesting. Thank you very much for raising the awareness on #FabFridayPost

    • 18th March 2016 / 3:47 pm

      Sounds like you may well have had the same thing. Hope you have now fully recovered. I have had a few people contact me now to say they think they had this, as had all the symptoms but were never diagnosed x

  5. 11th February 2016 / 10:47 pm

    I’d never heard of this either so well done for raising awareness!! Thanks for linking up to #PicknMix it goes live at 7am tomorrow again 🙂

    Stevie x

    • 12th February 2016 / 6:07 am

      I will be there 🙂 x

  6. 11th February 2016 / 8:57 pm

    I had heard if Hellp before but didn’t know much about it. Sorry you had to go through all that, but it’s great that you are turning it into a positive and raising awareness.Thanks for linking to #PickNMix
    Eilidh x

    • 11th February 2016 / 9:31 pm

      It has been like therapy to me. Thanks for reading x

  7. 10th February 2016 / 4:47 am

    How scary for you and the hubby! I am so glad to hear that things turned out on the good side of things. This post was very informative and I will be sharing it via all my social media!

    • 10th February 2016 / 9:07 am

      Thanks Hun, there is so much to my story it will take a few blog posts to go through it all X

      • 10th February 2016 / 7:15 pm

        I posted your story on Facebook and sadly I have a friend who had to bury her son shortly after birth because of this. :((

        • 11th February 2016 / 9:30 pm

          Oh no, I am sorry to hear that. The more I do of this blog, the more I hear other peoples HELLP stories. Send my condolences and good thoughts to your friend xxx

  8. mackenzieglanville
    9th February 2016 / 7:45 pm

    I to have never heard of this, you are so blessed to be here and safe, but still such a terrifying time for all of you. I developed an unexplained heart condition during my 3rd pregnancy where my heart rate sat incredibly high constantly. I was told that there was a high risk that I may not survive the birth, there was also a high risk my baby may not survive. I was terrified f leaving my girls and their father alone. I wrote them letters in case and spoke to my husband about how I wanted them raised. I was on bed rest, couldn’t walk far as my heart rate would get dangerously high even going to the toilet. I was so sad to not be able to walk my little girl to kinder or play with my 2 year old properly. At 36 weeks via c-section thank God I had a healthy baby boy and I survived to! I was so relieved, I can not explain the relief! I still feel so lucky and although I would love another baby I know I can not have one. I am glad you are safe! Enjoy your family and thank you for sharing this with the world, we need to be educated.

    • 9th February 2016 / 8:48 pm

      That must have been so hard, particularly not being able to play with your other children. Cant imagine what you must have went through. I am so so glad to hear that your baby boy was healthy and you are here to give your children hugs and be there for them. Thanks so much for sharing this. xxx

  9. 9th February 2016 / 6:56 pm

    I hope this post helps with awareness. I know what it is because one of the Mums in my antenatal classes had and had to have her son delivered early very quickly due to the complications of HELLP it’s very scary. My friend has since had a second pregnancy and was VERY nervous but didn’t get HELLP a second time so there is hope x

    • 9th February 2016 / 8:45 pm

      I am so glad your friend was well in her second pregnancy, that must have been a worry for her! Hope she has fully recovered from HELLP, I was lucky enough to not be left with long-lasting problems xxx

  10. Rachel (Lifeathomewithmrsb.com)
    8th February 2016 / 9:05 pm

    Oh wow! i’ve never heard of HELLP! I am so relieved that both of my pregnancies where healthscare free! #anythinggoes

    • 9th February 2016 / 8:38 pm

      thanks for reading 🙂 x

  11. 7th February 2016 / 11:50 am

    I HAVE heard of this, but that is only because I was a prime candidate for Pre-Eclampsia and HELLP in both my pregnancies (and my husband left with the same fears as yours, though more down to my c-sections and rupturing but that is a different story). A lot more needs to be done to raise awareness on this as often symptoms can be brushed off even though they need to be seen immediately by a doctor however silly you may feel x

    • 9th February 2016 / 8:38 pm

      Sorry to hear you had a tough time as well. Agree a lot more needs to be done to raise awareness, the symptoms I had were brushed off as a twin pregnancy which was expected to be tough x

  12. 7th February 2016 / 9:31 am

    I had heard of it but never knew what it was. It sounds more than scary and thank you for explaining it in such easy to understand language x

    • 9th February 2016 / 8:36 pm

      Thanks for reading xxx

  13. 6th February 2016 / 10:32 am

    Such a really informative post. I hadn’t heard of it before so it’s been great for me to become more knowledgeable. Thanks for sharing

    • 9th February 2016 / 8:36 pm

      I don’t think many people have heard of it at all and the comments I have had on my blog have confirmed this so far. Not much research been done on it either unfortunately. x

  14. thepunkymoms
    6th February 2016 / 10:15 am

    wow how terrifying

  15. 6th February 2016 / 12:22 am

    Great that you’re giving this information. I do know about it, but that is because of reading Leigh at Headspace Perspective’s blog, I had never heard of it during my pregnancies. Keep up the good work spreading awareness. I’m glad that you were okay in the end, but it sounds terrifying. #momsterslink

    • 9th February 2016 / 8:35 pm

      I have started looking through Headspace and Perspective’s blog and she has been in touch on twitter as well. thanks for the tip x

  16. 5th February 2016 / 10:03 pm

    Gosh how scary – I have never heard of this before – It is great that you are sharing your story to raise awareness to others. Kaz x

  17. 5th February 2016 / 9:29 pm

    Oh you poor thing, I am sorry to hear what you are going through and I hope that you will get the support you need hun! xx

  18. 5th February 2016 / 8:27 pm

    Ah I spy people talking about me! Lol.

    Yes I had HELLP Syndrome too. I self diagnosed it at 32 weeks as I had pre eclampsia but noticed my platelets had dropped in my recent blood tests. I got told by a doctor not to be so stupid as it was so rare. I went more and more downhill until at 36 weeks I demanded to be induced as I said I felt like I was dying and something wasn’t right. I was actually in the beginning stages of kidney and liver failure by this point and it was just after delivery that they diagnosed me. I have very little recollection of the next few days, except being told by my doctor that they didn’t think I was going to survive the night and a full team worked around the clock to save me. My babies had stopped growing at 32 weeks when it developed and were born tiny but healthy. It took 8 weeks for my liver to recover and a good six months plus for me to get over the birth trauma I suffered as a result.

    It is indeed correct that there is no risk of HELLP Syndrome if you go on to have another child with a different father, as HELLP is caused by the placenta and the male DNA is what determines how the placenta is formed. A lot of people still do not take the risk, but my current pregnancy was an accident!

    • 6th February 2016 / 8:05 am

      Hi Emma,
      It sounds like your instincts kicked in and thank goodness it did!
      My midwife ignored all the signs, will be talking about that in a future post. It was only when she went on holiday and another midwife took my appointment that it was picked up. I was sent to hospital that day and that kick started everything. I dread to think what would have happened had my normal midwife not been away.
      I can’t remember the first few days after the birth either, apparently I was blue and the only thing I said on day 1 was, I feel like I have been hit by a truck and I am dying. I then passed out for the rest of the day. We didn’t know I had HELLP until a few days after the birth, the doctors didn’t mention it, I thought I had cancer the way everyone was looking at me. It took my husband cornering a nurse to get it out of them. Of course we were then none the wiser as we didn’t know what it was.
      I found it really interesting to hear that about future pregnancies, I had never heard that before. Although there is so little information out there, I am not surprised that I don’t know everything there is to know about HELLP.
      I have been following your blog for a while and will be continuing to do so. Thanks for coming onto my blog to connect, I find it so interesting speaking to other survivors, and nice to speak to someone who has been through the same thing. xxx

  19. 5th February 2016 / 8:11 pm

    Firstly, Thank Goodness you are okay – you and your family must have really been through it. I agree, life does teach us so many lessons along the way and the number one lesson I have learnt is to be happy with your lot – stop looking for the next thing.
    Thanks for sharing this important and informative post with #coolmumclub.

    • 9th February 2016 / 8:33 pm

      Absolutely, life is short so definitely be happy and appreciate what you have, thanks for your comment xxx

  20. 5th February 2016 / 2:41 pm

    You should pop over to Crazy With Twins blog as she had HELLP syndrome too. It must have been a very scary time for you all

  21. 5th February 2016 / 12:58 pm

    I’ve been reading another blogger who’s at risk of this again with her second pregnancy, so it’s interesting to understand more about it. Certainly scary especially if you’ve no idea of it before it happens.

    • 5th February 2016 / 1:11 pm

      Oh is that Emma, Crazy with Twins? I follow her blog too 🙂 x

      • 5th February 2016 / 1:49 pm

        Might be. I thought it was Fi, but maybe it is Emma as I read her blog too!

        • 5th February 2016 / 1:57 pm

          I found her recent blog post really interesting. She had said that as she was pregnant through a different partner then it means she is not any more at risk from HELLP than any other pregnancy. That was the first time I had heard that, can’t seem to find anything concrete about this online though. X

  22. Helen
    5th February 2016 / 10:55 am

    A close friend developed HELLP Syndrome and ended up giving birth at 36 weeks, luckily both baby and Mummy were ok and her son has grown up to be a healthy little boy 🙂 #PicknMix

    Helen x

    http://treasureeverymoment01.blogspot.co.uk/

    • 5th February 2016 / 1:13 pm

      I am they were both ok. It is very scary to go through it, especially when you have no idea what it is! X

  23. 5th February 2016 / 10:08 am

    Well, I don’t know what happened to the comment I had posted earlier on your post but I will comment again. I had never heard of HELLP before and I am very intrigued by this as it does seem similar to Pre-Eclampsia but wow, the risk with HELLP seems greater. I had no idea that so many had experienced this and I am sure glad that you have survived it to better educate people about it. Will you continue to write posts on the subject in the future?

    • 5th February 2016 / 10:14 am

      Oh that’s strange, don’t know what happened to your previous post 🙂 Yes will definitely be writing more posts on what I experienced. Hoping for some guest posts too from medical professionals/survivors in the coming months. Might even persuade the hubby to write a post or two! X

      • 5th February 2016 / 10:20 am

        Oh that would be really interesting to see some guest posts from medical professionals and other survivors as you stated that there is such a shortage of info out there. 🙂

  24. 5th February 2016 / 9:21 am

    I’ve never even heard of this before! Great informative post #effitfriday

    • 9th February 2016 / 8:31 pm

      Thanks for reading x

  25. 4th February 2016 / 9:10 pm

    I have never heard of this but it sounds extremely important to spread awareness about it and I’m glad that you are doing that. I’m also glad that your and your children are alive and well. I wouldn’t want to risk my life either to have more children. I have decided to stop having children but for very different reasons and I still get the whole, “you’ll change your mind” thing. They obviously don’t take your condition seriously and that is a real shame. If someone I cared about was a survivor of this, I would completely support their decision to not have more children. Thank you for sharing with #momsterlink

    • 9th February 2016 / 8:31 pm

      Thank you, as you say I think most people don’t know what we went through as a family. x

  26. 4th February 2016 / 8:03 pm

    Oh wow I have never heard of this but thank god that you and your sons survived. For something so terrible that’s crazy that it isn’t something that is widely known of, I have had five babies and twenty pregnancies and never once have I heard of it!! Great post to raise awareness though, thank you! xx

    • 9th February 2016 / 8:29 pm

      Thanks, I hope as my blog progresses I can raise more awareness. xx

  27. The Anxious Dragon
    4th February 2016 / 8:19 pm

    This is something I had never heard of before. Thank you for sharing your story and spreading awareness of the condition. #Momsterlink

    • 9th February 2016 / 8:30 pm

      I have lots of ideas on how to progress the blog and raise awareness. Perhaps too much, not sure where to start. Must make a list 🙂 x

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