Everyone Should Know About Pre-Eclampsia and HELLP Syndrome

Pre-eclampsia and HELLP syndrome are life-threatening conditions that can happen in pregnancy. Thankfully they are rare, but they can and do kill women and babies. These illnesses nearly killed me, and they took the life of my much-loved baby son.

I say this not to scare people, pregnant women especially. Pregnant women have enough to stress about. The trouble is, there is not enough awareness about these conditions, or their symptoms.

The issue is close to my heart because I had pre-eclampsia and HELLP syndrome in February 2014, when I was just 24 weeks’ pregnant. I thought I was very knowledgeable about pregnancy, but I did not think pre-eclampsia could strike so early, and I had never heard of HELLP syndrome before.

The only cure is for the baby to be born. My son Hugo was born by emergency Caesarean section when I was 24 weeks and four days pregnant. Sadly, he was too small, and premature, and died when he was 35 days old.

Since Hugo’s death I have raising awareness of these conditions. The video below was made for Roche, a medical testing and screening company who is launching a new pre-eclampsia test. They were looking for a bereaved parent to tell their story to demonstrate the devastating impact the condition can have.

Please take a few minutes out of your day to watch this video, and find out just how serious pre-eclampsia and HELLP syndrome are (more information about our story is below the video link).

I have produced this post to be shared – please do share it with whomever would find it useful (ie everyone!).

In case you haven’t heard of HELLP syndrome before, this is what it stands for:

  • ‘H’ is for haemolysis – this is where the red blood cells in the blood break down
  • ‘EL’ is for elevated liver enzymes (proteins) – a high number of enzymes in the liver is a sign of liver damage
  • ‘LP’ is for low platelet count – platelets are cells in the blood that help it to clot.

The symptoms of pre-eclampsia and HELLP syndrome include:

  • Heartburn/indigestion with pain after eating
  • Swelling, and sudden weight gain
  • Shoulder pain or pain when breathing deeply
  • Malaise, or a feeling that something ‘isn’t right’
  • Pain under the right side of the ribs
  • Headache and changes in vision

Women may not necessarily have all of these symptoms. Another symptom is high blood pressure and protein in your urine. These are checked during your routine midwife appointments, which is why it is crucial that you attend them.

If you are at all worried about anything during pregnancy, or if something ‘just doesn’t feel right’, call your midwife, or GP. Your midwife or GP shouldn’t mind, and if they do – insist.

If, in the rare event you do have pre-eclampsia or HELLP, the earlier it is diagnosed, the earlier it can be treated. This means you will get better quicker, and it could help your baby too.

_______________________________

Background to my story

The video has been heavily edited; I spoke for about 30 minutes and with the best will in the world, few of you will have the time to sit and watch a video that is that long.

To flesh out the story and give a bit more context, my pregnancy was completely normal until around 23 weeks. I developed what I thought was heartburn, gained weight, was breathless, and felt very emotional. These can be routine pregnancy ailments, and I thought I would just have to put up with them.

How wrong I was.

I shall be forever grateful that I had a routine midwife appointment a few days after the symptoms appeared. I was sent straight to my local hospital, where I was diagnosed with severe preeclampsia and HELLP syndrome. I was stabilised, and two days later I was sent to a specialist hospital two hours away from home because I was so ill and our baby so premature.

Hugo was born the day after we arrived by Caesarean section. The team that was looking after me was concerned that my condition was deteriorating, threatening the lives of both me and my baby (I later discovered I was on the brink of multiple organ failure). I was put under a general anaesthetic. My partner Martin had to wait outside theatre, terrified that he was going to lose us both.

Our son was born, tiny but fighting. He was taken to the neonatal intensive care ward, and I to the adult general intensive care ward. It was about 30 hours before I was able to see Hugo because I was too sick to be taken to him, and he was too sick to be taken to me. When I met Hugo, the consultant encouraged me to put my hands in the incubator and he gripped my finger. It was the best moment ever.

Hugo did not have the brain or bowel problems the neonatologists warned us about before Hugo was born. However, his lungs were in bad shape and when he was three weeks old he was diagnosed with chronic lung disease. Every possible treatment was tried, but failed. Our feisty boy (nicknamed Hugo Boss by his nurses) tried so hard to come home with us.

Sadly, on March 27 2014, the doctors said all options had been exhausted. Hugo himself told us he had had enough, and he died in my arms later that day. He was 35 days old.

The day after, Martin and I made the long journey back to our hometown, empty handed.

We are heartbroken, devastated, disconsolate. We love and miss our Star Boy so much.

Hugo’s Story and HELLP Syndrome 10 Months On give more information, if you are interested in reading more about our story.

 

 

Brilliant blog posts on HonestMum.com

19 Comments on Everyone Should Know About Pre-Eclampsia and HELLP Syndrome

  1. Honest Mum
    February 8, 2015 at 10:40 am (2 years ago)

    Vital post, so important that more women are exposed to what can happen in pregnancy, well done for being brave to share your story and information that will help many others. Thanks for linking up to #brilliantblogposts

    Reply
    • Leigh Kendall
      February 10, 2015 at 2:05 pm (2 years ago)

      Thank you, lovely. It’s crucial for women to be armed with all relevant information in pregnancy xxx

      Reply
  2. Adam
    February 6, 2015 at 4:41 am (2 years ago)

    Very moving stuff as always Leigh. Thank you for sharing.
    Do you mind if I ask; is this a one off or is it likely with future pregnancies ?

    Reply
    • Leigh Kendall
      February 6, 2015 at 5:48 pm (2 years ago)

      Thank you, Adam. Re future pregnancies, no one can say with any certainty. Some women have gone on to have HELLP-free pregnancies, some have had HELLP just as severely next time, some have had it later in pregnancy and less severely. Unfortunately, there’s no way of telling currently. The best they are able to offer in future pregnancies is lots of monitoring. Scary! x

      Reply
  3. mytravelmonkey
    February 5, 2015 at 12:23 pm (2 years ago)

    Thank you for sharing this information – it’s really not the type of thing they tell you about when you’re pregnant but it’s always, always important to be aware. Your loss of Hugo always brings a lump to my throat but it’s still inspirational to me how you are now helping so many others. I had suspected pre-eclampsia and my blood pressure was through the roof. My placenta also failed and after a horrific moment when Monkey’s heart began to fail, and I had to have an emergency-c section. I am blessed, he was fine, but he was only 4lbs13 and I was 2 weeks overdue. Obviously, I am more keen than ever if I am to become pregnant again, that I will be monitored much more closely. Thanks again xxx #brilliantblogposts

    Reply
    • Leigh Kendall
      February 6, 2015 at 5:50 pm (2 years ago)

      Gosh it sounds like you had a scary experience. I’m glad your baby is ok. You’re right, it’s so important to be aware of things that can happen in pregnancy. Knowledge is power! xxx

      Reply
  4. Mummy Writes
    February 5, 2015 at 10:27 am (2 years ago)

    Heartbreaking to read this Leigh, even though I feel I know your story so well. It was more heartbreaking to watch the video and I can relate to the way you recount the story, the painful story you’ve told and written so many times. You’re doing great things in Hugo’s memory bringing this to public attention. xxx #brilliantblogposts

    Reply
    • Leigh Kendall
      February 6, 2015 at 5:51 pm (2 years ago)

      Thank you. It still doesn’t feel quite real – is it really my story? I know it is of course, I just wish it wasn’t. Thank you for watching it xxx

      Reply
  5. Valerie
    February 5, 2015 at 1:01 am (2 years ago)

    My story is very similar. My pre- e started at around 19 weeks and was misdiagnosed. My doc told me I was over weight to explain away my unusually (for me) high bp. I had migraines so she told me that the fact that they were worse and causing vision issues was normal during pregnancy. She went as far as to say that i was over reacting about it all because it was my first. Of course I was a little nervous. I had already had 5 miscarriages in the last 4 yrs. At 20 wks I drove myself to the er in sever pain under my rib. They insisted it couldn’t be the baby it was my gallbladder and it had to come out NOW. I spent the next week in the hospital having it removed and recovering (during this time I was sustained on only IV fluids and not allowed to eat by mouth at all. No ultra sounds were do to check on baby during the whole visit. only heart rates were taken. It was always strong so she was obviously fine right? 2 days after being released from the hospital my husband rushed me back to L&D. I couldn’t stop vomiting and my pain was excruciating! My bp was 180/90 at the time of arrival in the er. I was seen by the on call as my doc was again on vaca for the 4 th time since my pregnancy started. I was immediately care flighted to Dallas and at 22 weeks I had an emergency c-section my Angel died 10 mins after she was born. I never got to hear her cry or even wimpier. Although my Husband who was with me during delivery was able to hold her in her last moments and listen to her soft little cries. I was diagnosed with Severe Pre-E and Stage 3 HELLP.

    Reply
    • Leigh Kendall
      February 6, 2015 at 5:51 pm (2 years ago)

      I’m so so sorry. This is heartbreaking. Thank you for sharing your story xxx

      Reply
  6. Ellen
    February 4, 2015 at 12:27 pm (2 years ago)

    I was diagnosed with this at 34 weeks. I went to the ER and was sent home because my pain was on the LEFT SIDE and not the right so the doctors didn’t know what was wrong and said to get follow up bloodwork with my Dr in 2 days. At that time my platelets were off and liver enzymes elevated but because the pain was on the left they didn’t diagnose me at the ER. I got follow up bloodwork and was called immediately to the hospital where I had an emergency c section– I would have been in a coma by the next day without the emergency c-section. I got platelet transfusions before and during the operation and had to be put under general anesthesia as well. My blood pressure was elevated for ME but not as high as other people get. It was still dangerous. My doctor said I didn’t ‘look’ as sick as someone who had my lab results. For a few weeks I had felt generally ‘crappy’ but not until that last week did I have definitive symptoms. I did not have protein in the urine until 2 days after my ER visit. I knew something was wrong but just didn’t know what until it was almost too late. We were very fortunate we have a healthy 8 month old. She spent 2 weeks in the NICU and was 3.5 lbs at birth in the 3rd percentile the hypertension has caused her to be small so the problem went on for longer than could be detected.

    Reply
    • Leigh Kendall
      February 4, 2015 at 2:16 pm (2 years ago)

      I’m sorry to read of your experience, it shows how important awareness is. I too felt a bit crappy for a couple of weeks before being diagnosed, but I’ve felt a lot worse at other times in my life for minor illnesses that have not been life-threatening! Thanks for reading and commenting xx

      Reply
  7. Anton Wills-Eve
    February 3, 2015 at 11:35 pm (2 years ago)

    This tragic and touching story reminds me that all pregnant mothers should never feel they are causing a fuss or attention seeking when anything feels wrong or odd at any stage in their pregnancy. See your gp or midwife at once if you are in any doubt about your health. To Leigh and Martin, thanks for the courage to tell your story. God Bless.

    Reply
    • Leigh Kendall
      February 4, 2015 at 2:15 pm (2 years ago)

      Absolutely, Anton, that is wise and vital advice. Thank you so much for taking the time to read Hugo’s story, and for your comment x

      Reply
  8. benwirral
    February 3, 2015 at 10:25 pm (2 years ago)

    Reblogged this on Ben's Blog and commented:
    Important information about HELLP syndrome and Pre-Eclampsia: please read!

    Reply
  9. alig007
    February 3, 2015 at 4:47 pm (2 years ago)

    Thank you so much for sharing your story! It sounded a lot like mine and my son, Charlie’s story, he was born around 24wks too, but only lived for 40 mins. It means so much to hear someone else talk about it, thank you 🙂

    Reply
    • Leigh Kendall
      February 4, 2015 at 2:12 pm (2 years ago)

      I’m so sorry about your son Charlie, Ali. HELLP is utterly devastating. It’s so rare, it’s reassuring to read of someone else’s similar experience isn’t it. Love to you xxx

      Reply

2Pingbacks & Trackbacks on Everyone Should Know About Pre-Eclampsia and HELLP Syndrome

  1. […] Everyone should know about pre-eclampsia and HELLP syndrome […]

  2. […] I told my story on film for a medical company that is developing a pre-eclampsia test. They wanted to demonstrate how serious these conditions are, and the devastating impact they can have. The company kindly said I could use the video on my blog, and I published it last week. […]

Leave a Reply

Your email address will not be published. Required fields are marked *

Comment *






CommentLuv badge