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

When Is The Best Time To Try To Conceive After Loss?

My baby son Hugo died last year. We will always love Hugo, we will always miss him. He can never be replaced, but my partner and I would dearly love another baby, one we can take home. A question that has been troubling us is when the best time to start trying to conceive might be?

Put simply, there is no right time.

When I fell pregnant with Hugo I was full of joy, excitement, and a bit of anxiety – we both were – all pretty normal emotions. We were so looking forward to the arrival of our baby. However, at just 24 weeks I nearly died as a result of getting the rare pregnancy complications HELLP syndrome and pre-eclampsia. Hugo had to be born 16 weeks prematurely. He was growth restricted, weighing just 420 grams, and he died in my arms 35 days later.

That means if – when – I fall pregnant again I will be super high risk. I am especially high risk not only because I had the hat-trick of HELLP syndrome, pre-eclampsia, and intra-uterine growth restriction, but also because they struck me so severely, so quickly, and so early in pregnancy.

Me and Hugo

Me and Hugo

A frustrating thing about each of those three conditions is that we know what they are, and we know what the symptoms are. We sort of know what causes them (in very simple terms problems with the placenta, and the blood vessels force things back to the mother, which then causes her problems), but we don’t understand why it happens. If we don’t understand why something happens, we can’t prevent, or cure it (the only cure is for the baby to be born, which isn’t so bad if the mother is close to term, but catastrophic when it is so premature). We can only monitor.

And hope.

Pre-eclampsia and HELLP syndrome are relatively rare conditions. They most commonly appear later in pregnancy, and cases like mine are very rare. That means it is difficult for doctors to give a figure for the likelihood of it happening again. Doctors have given us different numbers which are educated guesses. Not to sound flippant for something so serious, but any figures we are given are about as meaningful as saying the chance of recurrence is eleventy-seven purple dinosaurs.

I might get to term without any complications. HELLP syndrome may appear again, but later in pregnancy and less severe. Or, it might appear as early as it did before.

No one can know.

Me at 20 weeks pregnant with Hugo.

Me at 20 weeks pregnant with Hugo.

Not knowing exactly what causes HELLP syndrome means it is impossible to do or not do anything to alter my chances of avoiding it in another pregnancy. There is no cause and effect, no ‘if this then that’. It is important for me to be as healthy as I can, physically, just as it is for anyone but there is no direct link, like there is with something like lung cancer and smoking.

One reassurance is I will have so many additional tests. Additional scans (including Doppler scans, which track the blood flow to and from the placenta) and blood tests will be able to track at an early stage whether things are starting to go awry. The difficulty with that, however, is there isn’t an awful lot they can do if things do start to go awry. I could only be monitored, and managed up to a point that is safe for me and the baby.

That means I am likely to be incredibly stressed and anxious prior to each appointment. I will probably have to have a bag packed at an early stage, and take it with me each time I go to the hospital in case I need to be admitted.

The stress isn’t helpful, of course. Increased stress leads to increased blood pressure, which is bad for me. Increased stress leads to an increase in the levels of a hormone called cortisol, which is bad for the baby.

So, I shall have to work on relaxation, meditation, positive thoughts. I will need all the support I can get to get me through that pregnancy. No additional stresses (as far as life can ever be controlled).

There is also the consideration that my pregnancy would not just be about me, but about the impact it may have on so many others, too. While the additional checks will reduce the chance of another pregnancy killing me, my other half, my family and friends will all be worried for me. My other half was just as devastated as I was when Hugo died. My family and friends were greatly upset, too.

Mummy, Daddy, Hugo.

Mummy, Daddy, Hugo.

Having my first pregnancy go so disastrously wrong does not give me protection from any other issues in another pregnancy, giving me more things to worry about. Miscarriage, stillbirth, other problems that mean the baby is unable to survive.

If another baby is born prematurely, we will have to go through the stress of neonatal care again, with an uncertain outcome.

One hope I hold on to is that another pregnancy without complications is possible. Another mum got in touch through my blog to say she had HELLP at 25 weeks and her baby also sadly died. Happily, she had another baby near term, with no complications.

It boils down to a couple of questions:

If I try and it goes wrong again, could I cope with losing another baby? I don’t know.

If I don’t try again, could I cope with never knowing whether I was able to take a baby home?

No.

With my history, another pregnancy will always be terrifying. I have to accept that there is no right time.

Anything can happen to anyone at any time, of course. The dilemma for us is that we know too much about things now. For all my talk about the value of information, I can see there are times when ignorance really is bliss.

Brilliant blog posts on HonestMum.com

The importance of balanced messages when talking about birth

My mind has been racing since a brief discussion on Twitter last night about helpful and unhelpful vocabulary in healthcare communication.

The discussion stemmed from a Guardian article bearing the headline “Should pregnant women be encouraged to shun labour wards?”.

The words used in the headline falls into the ‘unhelpful’ category. The article actually includes the experiences of three people: one an advocate for home birth; a mum who chose to give birth in a hospital; and a dad whose wife chose a home birth for their fourth child – there were complications and he advocates choice. In short, the article really says “different women choose different places to give birth for different reasons”.

Articles such as this are all as a result of new NICE guidelines that suggest 45% of births are more suitable for midwife-led care or home birth. Difficulties with healthcare communication and such headlines can arise when words such as ‘are’ and ‘is’ are used. Yes, the guidelines are based on evidence, but when you say ‘are’ and ‘is’, people tend to interpret that as a blanket fact. ‘Could be’ is better than ‘are’ because each woman is an individual, with her own individual needs.

Some commentators are concerned the guidelines could remove choice, rather than giving more, worrying that ‘encouraging’ women to give birth at home is a euphemism for ‘forcing’ them to do so.

This example demonstrates that whenever a new guideline on any health matter is released, it will be met with a healthy dose of cognitive dissonance – people interpreting the news based on their own experiences, expectations, hopes and fears.

Cognitive dissonance happens even if you have evidence for your new guidance coming out of your ears. As an NHS communications manager, countless hours of my life have been spent translating NHS guidance on a range of matters – cancer screening, vaccinations and healthy lifestyles to name just a few – into something that the public can understand, relate to – and hopefully act on.

When writing a press release on a health matter, or a patient information leaflet great caution has to be taken to not over-generalise, raise unrealistic expectations, or be misinterpreted by the media (although with the best will in the world the latter is not always possible).

I understand that years of scare stories about all forms of birth have led to a crippling fear of birth. Balance is what is needed. When talking about home birth or midwife-led care being a safe or a safer (than hospital) option for a certain group of women, we should be careful to emphasise those options are not safe or safer than a hospital birth for every woman. A lack of that emphasis could have the unintended consequence of making women who have to give birth in hospital, or need to have interventions for whatever reason feel less of a woman, or to have failed, or to feel guilty.

Surely none of us want that.

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I know a couple of women who have given birth by Caesarean section, both emergency and elective. They said they have had comments from women who have delivered their babies naturally such as women who have had C-sections ‘haven’t really given birth’. What a horrible thing to say! I had an emergency C-section myself, and while I have little doubt pushing a baby out of your vagina hurts (a lot, probably), having your stomach muscles cut open is far from an easy option.

Yes, we need to stop fear of birth. Yes, we need to promote birth as a normal life event. But we should be careful to not encourage or perpetuate bitchiness and competition between women as another unintended consequence of these messages.

This is the kind of statement about birth that I would love to read:

“Individual women have individual needs when giving birth. Many women are able to give birth at home, but because of issues with the current system not all who want to choose a home birth get it. Hospital can be a stressful place to give birth, which can lead to some women having interventions that are unnecessary. That’s why we’d like to give more women, in joint discussion with them, the option to give birth at home if they are considered to be low-risk. However, the needs of mums and babies are paramount, and as birth is not always straightforward there may be mums who need to give birth in hospital, with or without intervention.

“Our ultimate aim is for every woman’s experience of birth to be positive. We will do that by empowering women to be able to voice their opinions, have as many options as possible, and strive to remove fear and guilt by saying there is no right way or place to give birth.”

I know my fantasy statement above is what the guidelines are trying to achieve – this statement from NICE sort of says the same thing.

The trouble is, some people will be literal and translate the key point into ‘they’re saying home birth is safer, that means hospital birth must be dangerous’. This isn’t helped by headlines such as this one from The Mirror: “Mums-to-be warned: ‘Have your baby at home, it’s safer'”.

Many people are too busy to delve in to the facts behind the story (or just can’t be bothered to look). That results in a perception that the guidelines are saying something like:

“Home is the safest place to have your baby! Good luck to you if you have to give birth in hospital. They’re scary places, staffed by evil obstetricians whose greatest pleasure comes from inflicting pain by doing things to you that you don’t need.”

Ergo, more fear is created by stigmatising hospital birth. We don’t want such a vicious circle. So, balance. When talking about birth, think about helpful and unhelpful words, how they might be interpreted and their consequences.

We also need a greater emphasis on patient feedback, so services know what to focus on. Happily, more hospitals throughout the NHS are doing this.

As well as listening to negative experiences so services can improved, we need also need to promote the positive experiences – fear not, there are plenty of them, wherever the mum gives birth, and however the baby comes out.

 

Note: I called the statement a ‘fantasy’ for sake of the avoidance of doubt that it’s not an official statement.

*Amendment: thanks to the cut and paste gremlins, the paragraph beginning “The trouble is…” was omitted from the original version.

Maternity Matters~ Ghostwritermummy

Reading between the lines of the news in a digital age

The media has always been used as a mouthpiece for propaganda, and we too often are given only selected parts of a story. In the digital age, with the wide availability of so many forms of media, we are privileged to be able to easily access the wider issues – and the other side of the story.

When I was growing up, we had four TV channels. The news was on at set times, and your family would read a particular newspaper. You could get extra news from the radio, and Ceefax or Teletext, if your TV had the capability.

Of course, people read between the lines of the newspapers, and questioned what they heard on the news, but getting more information was challenging.

The digital age has transformed how we digest news and current events: it puts us in control of what we read, watch and listen to, and when.

Alternative perspectives on a story are available literally at people’s fingertips on smartphones, tablets and computers. We are able to compare views from the online versions of newspapers, chat with people from all over the world on social media, and discover new opinions on blogs. If we so choose, we can sit in front of 24 hour news to watch a story unfold and develop.

A pertinent recent example of using digital media to gain a perspective on all sides of a story is yesterday’s announcement of new NICE guidelines for birth. Many headlines suggested that home is the safest place for women to give birth, with the implication that there was only one ‘right’ place and way to give birth. Such a view is very unhelpful for many women. Of course, there is far more to the guidelines, and it was fascinating yesterday to watch debates unfold.

On Twitter, women shared their own very different experiences of birth – some in hospital, some at home, some in midwife-led units. Some went to plan, others needed interventions. Most births had happy outcomes, but others ended tragically with the death of a baby. Tweeters shared the angle pursued by the news and daytime programmes, saving me the trouble of putting the telly on. Bloggers articulated their views eloquently in their posts, discussing the guidelines in the context of their own birth experiences.

It is wonderful to be a part of such open and honest dialogue, not just about this topic, but so many important issues too.

However, we must always be mindful of respect and boundaries when sharing news on digital media: 24 hour news is notorious for being too quick to report before all facts are confirmed; libellous allegations are posted on social media and spread like wildfire; graphic images of accident victims are shared; terrorists exploit social media to share their despicable videos of hostages’ murders.

Respect and boundaries on social media was discussed on Twitter earlier this afternoon in relation to the tragic deaths of Charlotte Bevan and her baby daughter Zaani. I send my deepest condolences to Charlotte’s family.

The group of us who had been tweeting realised we needed to take a step back and balance our sadness over their deaths and our desire to work together to do something to help and support others, with respect for Charlotte’s grieving family. It can be too easy to slip from expressing about a tragic situation on social media to speculating what might have happened, which is unhelpful and disrespectful to the devastated, grieving family.

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For all the potential we have to be an active participant with digital media, there will always be those who digest information passively. Those who take sensationalist headlines (typically from the good old Daily Mail) at face value. Those who share on Facebook the emotive posts by Britain First without pausing to think of the politics and tactics that are behind them.

You cannot always believe everything you read, and it is the sensationalist headlines that do the most damage to society: generating fear of crime, creating health worries with no foundation of evidence; inciting xenophobia and racism with unsubstantiated tales of immigrants stealing jobs and taking benefits. I find this apathy, and lack of reflection and contemplation about the facts behind the headlines exasperating, saddening, and at worst – scary.

On the lighter side, though, some tabloids’ finger in the air headlines can be amusing – guess what, everyone, winter is forecast to be cold! Maybe.

We should always take the time to question what we hear and what we read, taking advantage of all the tools we now have at our disposal to read between the lines of the news in this digital age.

 

Linking up with Mum Turned Mom, based on the prompt “I read the news today.”

mumturnedmom
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Avoiding an intrusive dystopian future for pregnant women

The test case of a child born with foetal alcohol syndrome is currently the focus of much debate. Later this month, the Court of Appeal will decide whether the child is entitled to compensation from her mother for excessive drinking during pregnancy. If successful, commentators say the case could set a precedent for other, similar cases.

I do not know enough about the case to make comment, but what concerns me about a precedent being set is the potential to criminalise pregnant women for a variety of things they do or do not do that may harm their unborn baby.

Pregnancy should be a beautiful time, but it can already be a fearful and worrying time for many expectant mums. There is so much advice on offer during pregnancy (from well-intentioned family and friends, the internet as well as health professionals) it can often feel overwhelming. You so desperately want to do the right thing.

From the moment we know we are pregnant – and sometimes even before, when we are trying to conceive – we make changes to our behaviour and lifestyle to give our little beans the best possible chance to grow into a healthy, bouncing baby. We constantly ask ourselves whether we are doing the right thing, eating and drinking the right things, too much or too little exercise – the list is endless.

Ultimately, we all know that too much alcohol, taking drugs and smoking is bad for us, male or female and whether or not you are pregnant. The real issue here is criminalising behaviour that may present a risk to an unborn baby.

If a precedent is set, where is the line drawn? Would women who drank alcohol before discovering they are pregnant be prosecuted? Pregnant women who are under or overweight; gain too much weight during pregnancy; drink caffeine; eat; unhealthy foods; fail to take folic acid; continue to indulge in brie, pate, and homemade ice cream? All these activities have the potential to harm an unborn baby.

Then we have the impact of stress to consider. When we are stressed, our body secretes a hormone called cortisol. Cortisol can be helpful in the short term to help us deal with a stressful situation, but long term it can cause harm – and it has the potential to harm the unborn babies of stressed-out pregnant women, too. I say this not to cause pregnant women additional anxiety, but to make the point that life can be stressful anyway; pregnancy has its own set of stresses (especially if you have other children and work, too) – heap on to that guilt, uncertainty and mixed messages about what expectant mums should and should not do and you have a recipe for harm.

Thinking more about guilt for a moment, we also have to consider the feelings of mothers who experience loss, at any stage of pregnancy. Guilt comes hand-in-hand with motherhood. Many baby losses cannot be attributed to any particular cause, but that does not stop bereaved mummies torturing themselves with “if only…”. My son Hugo was born at 24 weeks because I had the rare, life-threatening pregnancy complications pre-eclampsia and HELLP syndrome; Hugo lived for 35 days. There is nothing that could have been done differently, and nothing that could have prevented my illness or Hugo’s death. Criminalising behaviour that may harm an unborn baby has the potential to intensify these mothers’ grief, sadness, and self-flagellation.

The possibility of prosecuting a mother for activities during pregnancy reminds me of a book called Intrusion, by Ian Macleod. Set in Britain in a dystopian near-future, all women of childbearing age are forbidden from working in case their bodies absorb decades-old cigarette smoke from their workplace. They must also wear monitor rings, which record and report to the authorities any contact with noxious circumstances. In addition, they are not permitted to purchase alcohol unless they can prove they are not pregnant. This and a wide range of other intrusive laws in the book have been set by the government for the people’s ‘own good.’

Yes, this is fiction, but we need to balance protecting unborn babies with freedom, and choice.

People – men, women and pregnant women should feel free to make their own choices.

Of course, the issue at stake here is not just what we choose to do to our own bodies, but the impact on what pregnant women choose to do may have on an unborn baby.

What pregnant women need is clear, concise and easy-to-access information about what to do and what not to do in pregnancy for the benefit of both them and their unborn baby. The information needs to be, as far as current evidence and research allows, categorical and not giving mixed messages. For example, NHS advice says that alcohol should be avoided entirely when trying to conceive and while pregnant, and the next paragraph advises: “If they do choose to drink, to minimise the risk to the baby, we recommend they should not drink more than one or two units once or twice a week, and should not get drunk.” So, is alcohol in pregnancy ok in small doses or not?

Pregnant women who have substance abuse problems – or any other physical, emotional or mental issues need appropriate assistance.

All pregnant women need support and guidance, not have extra guilt heaped upon them, or be the subject of admonishment and vilification.
Brilliant blog posts on HonestMum.com

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