Life After…Birth Trauma

Many of you will know the background to my and Hugo’s story. Hugo was born by emergency Caesarean section on February 20, 2014. The circumstances of his birth were hugely traumatic because it was literally a life-and-death situation.

The legacy of the trauma of Hugo’s birth has affected me ever since. Flashbacks, a feeling of disconnection, like I am telling a story about something that happened to another woman, not me.

For a long time I thought I was going completely forgotten. Then I was fortunate to find a wonderful community of peer supporters on Twitter, including lovely Laura. These women have had different experiences of pregnancy and birth, but shared very similar difficulties afterwards. It was incredibly reassuring for me to know that I was not alone in my feelings.

In a very strange coincidence, Laura’s son Arthur was born on the same day as Hugo. Fortunately Arthur is now a lively toddler, but his mummy still battles the effects of life after birth trauma, as she describes. I will pass you to Laura to tell her story…

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On 20th February 2014, my son, Arthur George, was born by emergency caesarean section. That much is definitely true.

Almost everything else is up for discussion.

I remember my labour beginning on the 16th. I believe I was told much later that my son was in the occiput posterior position, at an angle so that he was jammed and could not turn.

I laboured in a great deal of pain for days on end and reached 4cm dilation. During that time, I had two shots of pethidine.

Finally, exhausted, I had the epidural, which only worked partially, and the oxytocin drip, which then had to be increased.

My notes, which I have seen only briefly, record my heart rate at 180bpm consistently.

I pushed before I reached full dilation, because I couldn’t not push, then was given the go ahead to push and pushed for another four hours. Then there was a failed forceps delivery, during which I tore badly. Then the spinal block and caesarean, during which the incision tore open and I haemorrhaged, losing about a third of my blood. The transfusion I was promised never materialised. I went home five days later but was readmitted about a week after that with an infection.

To me, it is a familiar story, but it feels like it happened to somebody else.

Life now is certainly different. I am mummy to a lively little boy and I juggle the mundane – the nappies, the Weetabix dried to cement on my kitchen floor – and the profound – that love – much like other mummies up and down the country. It is relentless and I am tired, much like other mummies. 

Unlike other mummies, I carry a deep grief. I grieve for the months that I was on autopilot, consumed by my own trauma, unable to love. I see photographs of my son as a newborn and I do not recognise him. It feels as if I missed that time, as if I were somewhere else, and I can never get it back.

It is mingled with the grief of yearning for another baby and knowing that it would not be the right choice for our family. In my mind, Arthur has a little sister. I see her so clearly. I know her name. I even talk to her sometimes. And sometimes I like to pretend that she will one day be in my belly, then in my arms.

I know pain – physical pain – as a companion in a way that I could not have understood before. Pain was always a temporary inconvenience. Now it is normal, and it is likely to be normal for the rest of my life, so I have learned how to work with it. I can no longer go from lying to sitting in one movement. I roll on to my side to get up in the morning. There are some chairs that I cannot get out of gracefully. One adapts. None of these things are world-changers, and actually I am astonished at my body’s ability to piece itself back together. 

My mental health took a harder hit, I think, though I was nobody’s poster girl for mental health to begin with. This was, in a way, a blessing: when you are used to carrying a heavy load, a few extra pounds are perhaps easier than if you had never lifted anything before.

Still, I know the hypervigilance makes me a nightmare to live with: every moment is a crisis, an emergency, whether it’s something minor or something imaginary or even just a vague, gnawing unease. It is exhausting for me to be terrified so much of the time and it makes me irritable and stressful to be around. 

Then there are the flashbacks. They come without warning and you cannot prepare for them. Imagine having a time machine but the machine is control. It can transport you back whenever, wherever.

I appreciate that this sounds odd; I will give an example. One evening, a few days ago, I was in a rocking chair in my son’s bedroom, with my toddler dozing happily, sprawled across my lap. My body noticed before I did that I was thirsty. (Thirst is a huge trigger for me now, and it’s difficult in this hot weather.) I was tired, and I lay back for a moment. 

Suddenly I am so, so thirsty. The thirst is pain. I am on my back, unable to move. I have forgotten that I am having a baby. I have forgotten even who I am. All I know is the moment I am in, no context, no meaning. And the thirst. I am trying to speak, to ask for water, but there is no saliva in my mouth. Whenever I see a face, I try to plead for water with my eyes, but they don’t hear me. Then I see a face that I recognise – my husband – and he is holding a white plastic hospital cup of water. In that moment, he is Jesus Christ, Buddha and all four of the bloody Beatles rolled into one. He holds the cup to my lips – and it spills, soaking into my hospital gown. It is too awful. He is back, with a brightly-coloured plastic straw in a new cup of water. I manage the smallest sip before the next contraction consumes me and everything rolls away.

And then I am back and it is sixteen months later and the baby is here, grown tall and fair and fast asleep on me. I am in a warm, dimly lit room – his bedroom. I tell myself things – the date, my age – to remind me of the present. The past is gone. I am shaking a little, but it is time to put my little boy down in his cot, to go downstairs and tidy his toys, to eat dinner and live the rest of this day.

That’s all any of us can do, in the end. I call it ‘the assault of memory’, the way I relive parts of the labour, birth and postnatal period over and over. But I know that I am fortunate to be alive. I am so fortunate to have Arthur, who is everything and more. I hope that I can forge meaning from my birth experience and one day help others.

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If you are interested in maternity services, you may be interested in joining the Maternity Experience community.

Got a Life After…story to share? Get in touch – headspace-perspective@outlook.com

 

What I Want The National Maternity Review Team to Know

The National Maternity Review is going to be assessing current maternity services, and consider how services across the country should change to meet the needs of women and babies.

My son Hugo was born in February 2014 when I was just 24 weeks’ pregnant because I had the rare, life-threatening pregnancy complications HELLP syndrome and preeclampsia. The day before Hugo’s birth, I had been transferred to a specialist hospital two hours away from my home. Hugo died in my arms aged 35 days.

I have written about my experiences extensively in other posts on my blog. To very briefly summarise, there is nothing I can fault in the clinical care either Hugo or I received. However, there were many issues surrounding communication that could have prevented further stress in an already heartbreaking situation.

Hugo’s Legacy is about helping other women who suffer birth trauma, other families with a baby in neonatal care, and parents who lose a baby. Anyone who experiences any of these things deserves compassionate care, and a streamlined system that enables people to get the support they need, rather than battle against it.

So this is what I would like the National Maternity Review to know:

That every woman is individual.

That evidence is vital in the context of providing safe care. But to recognise that evidence cannot tell you everything. Each woman, each situation needs to be considered according to its own merits.

Postnatal care – Hospital

That any new mother separated from her newborn baby for clinical reasons, as Hugo and I were, should be reunited as soon as it is clinically possible.

That no new mother should be left in an intensive care bed, her baby in the neonatal unit fighting for his life, feeling that she is the least important patient on that ward.

There should never be a delay due to interdepartmental squabbling about beds, and to which department the responsibility of taking the mother to see her baby belongs. (This happened to me in intensive care).

That postnatal wards need to have a greater awareness of the needs of mothers whose babies are being cared for in a neonatal unit. It is difficult enough for us being on a ward with women who have their babies with them. Please don’t delay us visiting the neonatal unit to see our babies because of a lack of coordination between maternity and neonatal about timing of rounds. Please don’t force us to make our own meal arrangements because the food that is provided sits getting cold on a tray next to our postnatal bed, while we are spending precious time with our baby.

Me and Hugo

Postnatal care – Community

That better consideration needs to be given to the postnatal care needs of mothers whose baby is in neonatal care, especially when the woman has been transferred to a specialist hospital away from home. The pathways need to be clear, sensible, and appropriate staff aware of them. For example, at first I was told I would need to make the four-hour round trip to see my own GP – impossible. Then I was told I would need to register with a local GP – challenging. Eventually I was able to see a community midwife at the hospital.)

Support for Birth Trauma and Bereavement

That no bereaved parent should return home with empty arms and feel cast adrift from the hospital. To have to find their own support. To have to make telephone call after telephone call explaining an illness they do not yet quite understand and have to say the ‘D’ word again and again. To feel like such a failure as a woman and as a mother. To have to relive everything that happened again and again because services in the 21st century seem not to find the capability to communicate with one another.

That there is support for women who have experienced birth trauma, and for bereaved parents, but people need to know about it – professionals need to know about it so they can direct parents accordingly. Let’s use some of that 21st century communication capability to close those circles, make those connections.

That when a woman makes a complaint about her care, (or feeds back about her care in any way) they are listened to respectfully. That they are made to feel like a human being with emotions with a response that includes words like ‘sorry’ where appropriate. That they do not receive a response that feels like a report to the trust board, a box ticked. That they are reassured learning has been made so no other woman has to suffer the same upsets, the same heartbreak, the same trauma. The same nightmares.

That Language Matters

No mother should ever be told by a panel of consultants their recommendation to ‘withdraw treatment’ for their child while that same panel of consultants stands, mouth agape as the mother lies crumpled on the floor, sobbing as though her heart has been ripped out of her chest. Which it has.

No mother should have to be told dismissively “all mothers feel guilty”, as if that is a salve on their pain.

No mother should have to read in a referral letter inaccuracies about the details of her son’s life and death, and for the GP who wrote it to phone her to apologise with the excuse that they did not read her notes because they were ‘too busy’.

No mother should be made to feel like she is abnormal because of what the trauma of her own life-threatening illness and grief over the death of her son has done to her mind. Instead, she should receive compassionate support to help her understand, and live with the trauma.

This is part of my story, a snapshot of my life and experiences since February 2014. There is nothing that can be done to undo what happened to me, or to Hugo. There is nothing that can be done to bring Hugo back.

But there are things that can be done to prevent other women suffering such unnecessary additional upset and torment.

That is why I would like the National Maternity Review to read, to listen, and to take account of my experiences.

In Hugo’s memory.

Birth, Twitter, and Perception

Since Hugo died, I have been using Twitter to promote Hugo’s Legacy. I have been fortunate to engage and make friends with a range of people who share my passion for making a difference to other women’s maternity experience. Twitter has on many occasions been set alight with women talking openly about their own experiences, and healthcare professionals talking about how things can be done differently. It has been quite a wonder to behold.

However, some conversations are unhelpful, create confusion and generate further polarisation of opinion.

A significant part of #HugosLegacy is about the importance of language, and the impact it can have. I was proud to be asked to be asked to be the #MatExp language champion.

Language matters – it is at the centre of everything. Language is important not just in a healthcare setting, between professional and patient, but also between professionals too.

Discussions around birth naturally generate a lot of passionate debate. There has been much discussion about ‘normal’ birth, a ‘prevailing fear’ of birth in the delivery room (from mums and healthcare professionals alike), and where is the right place to give birth. I have previously outlined my thoughts about the debate in posts such as There is No Right Way or Place to Give Birth, and the Importance of Balanced Messages When Talking About Birth.

However, some number of conversations are unhelpful and contribute little to the issue. Some conversations have been uncomfortable to observe because of defensive responses, unkindness, ‘side-taking’, trading of insults – they go round and round in circles and achieve nothing.

We need to stop and consider the impact of these conversations on women. Stop and consider how many people observe on Twitter without contributing their own tuppence worth.

We need to stop and remember that many tend not to trouble to read the whole thread, or examine the context. That people often take things at face value, which can lead to a negative perception. Perception often becomes fact, leading to a reputational issue.

We need to stop and consider the impact of conversations on the perception of maternity services: respect, kindness, listening and empathy are key, but are sadly lacking in some conversations.

We need to stop and consider that the perception of the birth debate can be summed up (somewhat crudely) thus: “‘Natural birth is best, interventions are always bad, good luck to you if you have to go to hospital”.

Seeking to remove fear of one thing by replacing it with fear of something else just generates more fear. Not to mention a whole heap of confusion for women about what and whom to believe, what and whom to trust.

On the whole, my experiences on Twitter have been excellent. People have been kind, supportive, sensitive and empathetic. However, I have at times not felt listened to  during discussions about birth issues. I have been upset by the response I have received on a couple of occasions. I have also been frustrated when a helpful discussion about anxiety after birth trauma was derailed by a interjection that led to an unhelpful discussion about the whys and wherefores about normalising birth.

I understand no upset is intended. I understand it can be difficult to express completely what you mean within 140 characters on Twitter. I understand that passion can sometimes take over. I understand that brevity and multitasking can lead to misunderstandings.

There have been times that I have not contributed to a debate because I thought there was little point. I’m not shy about expressing my opinion, meaning we need to be cautious about inadvertently discouraging engagement.

We all need to be mindful of the words we use to engage and the impact they have, whether it is in a healthcare setting or on social media. This is particularly true when talking about birth, which is always an emotive issue and when people are talking about very personal experiences.

Whenever I contribute to birth discussions on Twitter, I try to see things from my personal perspective, as a bereaved mother whose last pregnancy nearly killed me too; and from a professional perspective, as an NHS communications professional.

I have an understanding of how Trusts work; I have been involved with investigations, and sat through inquests related to the deaths of children and babies. My heart always ached for the bereaved families. Since the death of Hugo I know all too well the pain of losing your baby. One reassuring thought I have amidst my heartbreak is I know that everything possible was done to save Hugo’s life. I cannot imagine the pain of the families who could have had their babies in their arms if only things had been done differently, such as with the Morecambe Bay scandal.

For all my knowledge and experience, however, I cannot help but feel frustrated and confused.

As Great North Mum observed in her recent post, “A large problem with the whole issue of maternity services in general is the fact that midwives and doctors are all lumped together as entirely separate professions and tarred with the brush used to paint the worst of them. I have good professional relationships with both midwives and obstetricians and have seen the collaboration and mutual respect that characterises the best of both careers – but the average woman without the benefit of this perspective could be forgiven for being perturbed.”

Let’s not exacerbate these unbalanced perspectives with unhelpful discussions on social media.

There are so many of us collaborating, trying to make a difference to women’s maternity experience. Let’s remember that we are all working towards the same aim – safe care for women and babies, however and wherever the babies are born.

Language Matters! My #MatExp NHS Change Day Action

Being in any healthcare environment for any reason can feel disempowering for a patient. Effective communication between healthcare professionals and patients can help build trusting relationships, improve patient outcomes and patients’ experiences.

Communication is at the centre of everything, and no more so than in a healthcare environment:

That is why I have chosen my NHS Change Day action for the #MatExp campaign to centre around language.

As part of my action I will:

• Continue to raise awareness of the importance and impact of effective communication – verbal and written – through all appropriate channels (including my blog, on social media, engagement workshops, for instance). While healthcare communication is important in any specialty, as a result of my personal experiences my focus is on maternity and neonatal unit environments.
• Empower women to feed back about their experiences – positive and negative – to help health care professionals improve patient experience (part of this action includes discussing how to make the process of giving feedback easier, and meaningful).

I have been proud to be involved with the #MatExp campaign for the past few months. #MatExp is a campaign led by healthcare professionals and users alike, aimed at identifying and sharing best practice across the country’s maternity services. If you check out the hashtag on Twitter, you will see it has already been generating lively discussion about what needs to improve.

My passion for appropriate language and effective communication stems from my years of experience as a communications professional in the NHS. This passion was enhanced as a result of my personal experiences as a patient and as a parent in 2014.

For the benefit of those unfamiliar with my story, in February 2014 I was diagnosed with the rare, life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia when I was just 24 weeks along. The only cure is for the baby to be born, and my son Hugo was born 16 weeks early. My beautiful son was too small, and premature and sadly died at the age of 35 days.

Raising awareness of HELLP syndrome was the inspiration for my pledge for last year’s NHS Change Day.

Me and Hugo

While nothing differently could have been done from a clinical perspective, there were several incidences where our experience could have been less stressful, and additional upset avoided if there had been better communication. That is why I set up Bright in Mind and Spirit (it is what Hugo’s name means), to raise awareness of these issues.

This slide explains more about why language matters, and why healthcare professionals should care about getting it right:

Feedback from many other women on social media and through their own blogs reveals I am not alone in wishing for better communication in my maternity experience. These women had every kind of pregnancy and birth experience you can think of. The one thing we share in common is the impact poor communication and choice of vocabulary by healthcare professionals had on our maternity experience.

Language can have an enduring impact, with things that were said to women when they were giving birth to their babies staying with them many years later.

This slide describes the language we want to ban, and the kind of language we would like to see more of:

Medical jargon can be confusing and bewildering. In addition, some terms may impact a woman’s self-esteem.

Terms like ‘failure to progress’ and ‘incompetent cervix’ might be perfectly proper medical terms, not intended to be personal. But think about it for a moment: these terms describe a woman’s physiology. Women therefore cannot help but take personally such terms. In the context of pregnancy, where expectant mothers want to do everything possible to protect their babies, such words can inadvertently convey a sense of blame, leading the woman to feel she a failure or incompetent, rather than elements of her physiology that are beyond her control.

The words and terms in this column can make a woman feel like she is not in control of her body, her care, or decisions that are made. A bit of a walking womb. Doesn’t sound very nice, does it?

The examples given in the ‘language we want to see more of’ column outlines some simple ways to help a woman feel more in control of her body, an equal partner in her care, and involved in decisions. Sounds much better, doesn’t it?

Healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

There is so much discussion around language in maternity services. For instance, women have raised points about choice (some women have little choice about how or where they give birth, for a variety of reasons); risk (which sounds scary – often it means only ‘possibility’); and ‘normal’ birth (the notion that there is a ‘right’ way or place to give birth). The vocabulary we use to describe birth is crucial for helping women feel equal and empowered. It could also help remove the polarisation of views between ‘normal’ birth always being best, interventions always being harmful, and take some of the fear out of the delivery room.

Empowering women to feed back about their experiences is the second part of my action. Healthcare professionals may not always be able to recognise that experience needs to be improved, unless they receive feedback. The problem is, the traditional feedback processes can often be onerous, stressful and result in unsatisfactory results for the complainant.

The NHS complaints process is complex, for many reasons, and can include cases of straightforward feedback to serious incident investigations and everything in between. The whys and wherefores of the complexity of the process is not a topic for this post. However, there are some simple considerations individual providers can implement to help the complainant feel like they have been listened to, been taken seriously and that they matter.

My personal experience of the complaints process from a hospital, a GP practice, and a mental health provider is the opposite. More stress and upset was caused by written responses that were impersonal, formulaic, and failed to acknowledge the impact the experiences had on me. The tone of the letters felt like board reports, and that the response had to be written so it could be added to a chart.

People composing these responses need to take a step back and appreciate that while there are statutory points to be made, facts to be stated, the recipient is a human being with feelings that do not fit into a chart. Think about the language of the letter and how things are phrased to help the complainant feel like they have been listened to, been taken seriously, and that they matter. Where appropriate, also advise the complainant of actions that are being taken as a result so they can be assured taking the effort to give feedback was worth it.

It is difficult to write this post without some reference to the Kirkup Report. There is so much I could write about it, but this post from Birthrights provides a useful insight into the impact that communication had on the care of women and babies at Morecambe Bay – with tragic results.

Improving language and communication will take time, and a shift in culture. In many cases there are no easy answers. However, recent social media discussions (with midwives, obstetricians, professionals from other specialties, as well as other users) about language have been heartening. It is heartening because the discussions between healthcare professionals and users have happened, and on such a public forum. It is heartening to see language being thought of, and the link between communication, outcomes, and patient experience being recognised.

The main point to remember about communication in healthcare is to consider how you would like to be treated yourself. You’re likely to want to be treated with compassion, empathy and respect, aren’t you?

 

 

Karma and Luck

Karma is something I used to believe in.

“What goes around, comes around,” right?

Karma is supposed to mean that bad things happen to people because they have done bad things. Getting their just desserts, if you like.

This concept is something I have struggled with since Hugo was born, and even more since he died. What happened to me was so rare. Our baby dying was unthinkable. Surely it must have been because I am a bad person?

Such thoughts have plagued me, as well as guilt. For a long time, I thought it was my fault.

I tormented myself, punished myself.

Seeing the group of mums and prams at the café in the local park this morning gave me a heavy heart. When I was pregnant, I was looking forward to those groups. Am I unable to join them because I am a bad person?

Of course not.

I threw myself in to writing, and Hugo’s Legacy. A way of proving to myself that I deserved to still be here. A means of avoiding thinking the darkest thoughts.

I have had to tell myself that my blog traffic does not in any way correlate to my worth as a person.

I have had to remind myself that while Hugo’s Legacy is a reflection of my love for Hugo, what it achieves, or how quickly does not correspond to how much I love him. Rome wasn’t built in a day and all that.

I know, rationally, that what happened is not my fault. HELLP syndrome and preeclampsia are entirely arbitrary. It is bad luck that it happened to me. It is especially bad luck that it happened to me so early in my pregnancy.

‘Luck’ – there is a fanciful term. Chance. The roll of a dice that meant my chemical pathology reacted with the workings of the placenta that meant my pregnancy nearly killed me, and it killed my baby boy.

What happened is not a sign that I needed to be knocked down so I could come back stronger, or any similar well-intentioned quote about grief.

I did not need this to happen. I did not deserve it. Nor did Martin, or Hugo.

I am a good person, loving, compassionate, generous, and kind.

What happened is nothing to do with karma.

There are times when life doesn’t work out the way you want to. Sometimes, with tragic consequences. We are not all dealt an equal hand. Life is not fair.

That doesn’t mean I accept it, or feel sanguine about it. It sucks, I hate it, I rage at it.

But I have to find a way to live with it. My bad luck.

A friend posted this on Facebook this morning. A quote that spoke to me:

Yes, I am imperfect and vulnerable and sometimes afraid, but that doesn’t change the truth that I am also brave and worthy of love and belonging.

(Brené Brown, The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be  and Embrace Who You Are).

I am brave, and worthy of love and belonging. I will try to remember that. I will continue to be a good person, not from fear of karma, but because it is the right thing to do.

What goes around doesn’t always come around.