May is Preeclampsia Awareness Month: Why It Matters to You

In February 2014, I was 23 weeks’ pregnant with my first baby. I had been feeling a bit unwell for a few days: indigestion, breathing was difficult, and I had suddenly weight. All normal pregnancy gripes I thought, but I checked Dr Google just in case, as you do.

Dr Google suggested preeclampsia. “Don’t be so silly,” thought I. “It’s like Googling a headache and diagnosing yourself with a brain tumour. I’m only 23 weeks’ pregnant after all, and preeclampsia happens only in later pregnancy.”

It turns out Dr Google was 100% correct on this occasion.

I was wrong. So very, very wrong.

A week or so later a routine midwife appointment showed problems with my blood pressure and urine, and I was dispatched to the local hospital where I was diagnosed with not only severe preeclampsia, but also with severe HELLP syndrome.

I was seriously ill. Our much-wanted baby was in serious trouble, too.

The only cure for both of these illnesses is for the baby to be born. Otherwise, both mum and baby will die.

My beautiful little boy, Hugo, was born three days later by emergency Caesarean section. He weighed just 420 grams. Hugo was so small and premature that despite everything possible being attempted to save his life, he died in my arms 35 days later.

I am heartbroken.

Me and Hugo

Me and Hugo

There is nothing that can be done to change what happened to me, or to bring Hugo back. What I can do is to help make sure everyone knows about these devastating pregnancy complications and what to do about it.

What are Preeclampsia and HELLP Syndrome?

Preeclampsia and HELLP syndrome are illnesses that can happen only in pregnancy. That is because they are related to the placenta, the organ a woman’s body grows to keep her unborn baby alive.

No one knows exactly how or why the conditions start, but we do know that it is related to a problem with blood flow to and from the placenta. In the simplest terms, the problems with the flow deprive the baby, leading to growth restriction. The placenta responds by sending back things to the mother, which then causes her problems.

They can happen any time after 20 weeks (and in very rare cases, before).

What are the symptoms?

  • 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 (‘flashing lights’).

Not all women who have these illnesses will have all the symptoms – I never had the headache or ‘flashing lights’. There are a couple of symptoms, such as protein in your urine and high blood pressure that are difficult to spot yourself, which is why it is vital all pregnant women attend their antenatal appointments because these things are routinely checked.

Of course, some of these symptoms happen in pregnancy anyway. If you are worried, it is best to get checked out anyway – visit your midwife or doctor. They can check your blood pressure and urine and you will probably be sent back home again. Thankfully, these illnesses are rare, affecting around 5% of pregnancies, which means that you are 95% likely to not have preeclampsia.

Are these illnesses really that bad?

Yes.

The ‘pre’ part of ‘preeclampsia’ is important: eclampsia means seizures that can happen when your blood pressure gets too high. It is important to remember that preeclampsia is bad, and women need to receive medical attention so it does not reach the eclampsia stage.

HELLP syndrome stands for Haemolysis, Elevated Liver Enzymes, Low Platelets – serious stuff. I nearly experienced multiple organ failure. Other women with HELLP syndrome have had actual organ failure, and some have sadly died.

Preeclampsia and HELLP syndrome can be catastrophic for babies, too, such as for my Hugo. That is because the only cure is for the baby to be born, regardless of gestation. It is very rare for these illnesses to strike so early (23/24 weeks); most cases happen later in pregnancy, when luckily many babies have a better chance of survival.

I’m not planning on getting pregnant – why does it matter to me?

You might not want a baby, or your child-bearing days may be over. You may also be a man.

Whoever you are, you are likely to know a pregnant woman, or someone who is planning to become pregnant. These illnesses are rare, but they are real and they happen to pregnant women today, not just in the history books.

The more people who are aware of the symptoms the better: to save the lives of women and babies.

There really is no better reason to explain why it matters to you. No better reason to care, to remember the signs and symptoms, and to spread the word.

 

For more information:

NHS Choices

HELLP Syndrome on the Pre-Eclampsia Foundation website

HELLP Raise Awareness

My HELLP Symptoms

Everyone should know about pre-eclampsia and HELLP syndrome

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Brilliant blog posts on HonestMum.com

22 thoughts on “May is Preeclampsia Awareness Month: Why It Matters to You

  1. ari's mom says:

    Omg im very sorry for what happened to you and i also Thank you for sharing your story , I developed severe preeclampsia and HeLLp at 30 weeks my daughter was only 3 pounds she was in the hospital for 6 weeks, she is now 4 months old beautiful baby girl, she weights 11 pounds and is developing without any problems, the stay in the nicu was the hardest for me, I also ended up admitted again a week after I was discharged due to post partum eclampsia, every pregnant women should pay attention to their symptoms because thank god we were lucky enough to make it, but some others aren’t that lucky.

    Like

  2. kimberlybowman says:

    I’m so sorry to hear of your loss. Thank you for this page, which is one of the most clear and concise summaries of HELLP/PE that I’ve encountered.

    Today is day 100 for us in hospital with a little boy born at 26+3. It looks like we will be able to bring him home (fingers crossed) – but I have been looking for a link to share with friends/colleagues to help explain what happened. Thanks for writing this.

    Like

    • Leigh Kendall says:

      Thank you for taking the time to read about my experience and my Hugo, and to comment. All the best wishes for you – my fingers are crossed for you taking your little boy home. I hope my post helps explain to your friends what a traumatic event you have gone through. Much love xxx

      Like

  3. Fiona says:

    Well done for all you are doing to raise awareness! It is such an important cause that many are not aware of. So sorry for your loss.

    Like

  4. Rosie @ Little Fish says:

    Your story and photo breaks my heart to read. But I’m so glad that you have found the strength to share all of this with us. Such an informative and courageously written post and will do much to increase awareness – I didn’t know any of this before. Thank you. x

    Like

  5. Becky, Cuddle Fairy says:

    I’m so sorry for your loss. The photo of you and Hugo is so precious. This is a really important issue, well done for sharing your story and bringing awareness. xx
    #brilliantblogposts

    Like

  6. Jude's Journey says:

    This is such a courageous post, and one I can wholly relate to. I too have been blogging about life without my little boy. I was diagnosed with preeclampsia and admitted at 24+1 weeks. I developed HELLP syndrome and my liver failed on Christmas Eve. Our little boy was delivered on Christmas Eve by emergency c-section, at 25+1 weeks, weighing 480g. We named him Jude Alexander.
    Similar to your Hugo, he lived for 33 days, but because he had surgery at 8 days old, his body never recovered, and he eventually died of kidney failure on 25th January this year, in his mummy and daddy’s arms.. The first and last time we got to hold him.
    People do not understand the seriousness of preeclampsia and many do not even know that HELLP exists. I have been blogging since Jude’s birth and have a lot of support and following online, so please let me know if there’s anything I can do to help you. I’d love to raise awareness.
    I’m part of a group who are working with a team of consultants in Liverpool, who are conducting research into the effects of low dosage aspiring and why it may or may not help some women. Please let me know if you’d like some details – I think they meet up every few months (I haven’t yet been to a meeting).
    You’re so brave to share your story. I know how hard and tormenting it can be.
    Thinking of you and your family. Your little boy will always be looking over you, as is mine.
    These things only happen to the strongest of people. Xx

    Like

    • Leigh Kendall says:

      I’m so sorry for the loss of your little Jude. What a lovely name. HELLP syndrome is utterly devastating.

      The low dose aspirin research sounds interesting – I’ll pop over to your blog and leave a message.

      Thank you for your kind words. I think it’s sad we only discover our strength as the result of such heartbreak. Raising awareness is my tribute to Hugo, keeping his memory alive through his legacy. Sending love xxx

      Liked by 1 person

  7. Karen Ann Morgan says:

    I had pre-eclampsia in 1978. I had felt ill all day. My doctor would not come to see me even thou I was over 30 weeks pregnant. My Husband had to go to the surgery to get some tablets to stop me feeling sick. I remember being sick and losing my sight. The out come was about nine o’clock that evening, luckily my Husband had come to check on me as I was in bed, I had a fit, flattening my baby, My husband called the doctor and I was rushed to hospital for an emergency C-section. Our little boy James lived for 24 hours, as I was still ill I never got to see him, my Husband, and close family members went to his funeral a week later. I suffered with it again in 1981 when my daughter Jennifer was born 6 weeks early weighing 3lb 5ozs, luckily I had been admitted to hospital 3 weeks earlier with high blood pressure and protein in my urine. My blood pressure suddenly shot up during the night so I had to have another emergency C-section. Then in 1983 my youngest daughter was three weeks early, having been admitted yet again with high blood pressure and protein, no other symptoms this time thou, I had another C-section and Sarah was 4lb 5ozs. Eight years ago Jennifer lost her first baby Sofie at 22/23 weeks with pre-eclampsia, this resulted in a stroke after the birth. With determination she got better and they watched her when she was having Dewi 6 years ago. I gave her daily injections for a while before and after the birth to thin her blood. She suffered worse with high blood pressure after Dewi was born. Sarah then 5 years ago had her son Nathan 3 months early weighing 1lb 11ozs, luckily Jennifer had told her some symptoms to watch out for.

    Like

    • Leigh Kendall says:

      I’m so sorry for the loss of your son and your granddaughter, Karen. Devastating. It is personally heartening to know that you and your daughter both went on to have pregnancies free of preeclampsia, but nothing of course can replace James or Sofie. Thank you for taking the time to comment xx

      Like

  8. Astrid says:

    Thanks so much for raising awareness of this condition. I knew most of what you write here about pre-eclampsia and I recently read about a woman with full eclampsia (before that, I never knew what the “pre” meant). Didn’t know much about HELLP syndrome though.

    Like

  9. sarahmo3w says:

    Such a powerful post. It must be so hard for you to share, but it’s so important too. By raising awareness, you are saving lives. x

    Like

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