An Open Letter to a Recently-Bereaved Mother

Dear Broken-Hearted Mama,

I see you, numb.

Yet so full of pain. Pain that you cannot even begin to describe.

You may feel like the pain is unbearable, that the pain is going to crush you, that the pain is too much.

You may feel like your life has ended. That you do not want life to carry on.

I understand. I have been there.

My son Hugo died at the age of just 35 days. He had been born when I was 24 weeks’ pregnant, my first and so far only child.

Each one of those 35 days is so precious, but not enough.

No amount of time can ever be enough.

While your life has not ended; you continue to exist, your life as you knew it has ended. The end of innocence. The harsh realisation that bad things happen in life – and not just to other people.

Bad things happen to you, too. No one is immune.

We evolve during the course of our lives, of course. But grief changes you: suddenly, abruptly, shockingly.

Your relationships may change: some for the better, others for the worst. You are likely to discover that the old adage about seeing the best and worst of people during times of crisis is true.

Some people – even those previously closest to you – may not know how to deal with your changed relationship. The changed you. Most will want to do all they can to help you but because they do not know what to do for the best may blunder, put their foot in it, utter endless platitudes, and when tempers get frayed make you feel as though you are at fault.

The knowledge that the blunders are well-intentioned is unlikely to make you feel any better. It may feel like constant salt in the wound.

Me and Hugo enjoying a cuddle.

Me and Hugo enjoying a cuddle.

So much of your pain cannot be expressed in words. What you may want most of all is someone to sit with you as you cry or stare into space.  Someone to understand that you don’t know how to express your emotions. That sometimes, the power behind those emotions scares you. That you think the pain will never ever end.

But many people are uncomfortable with silence. People may want to talk at you, want to tell you about their own experiences of bereavement. Or they may want to tell you what they think you should do. They want to make you ‘better’, not realising life will never, ever be better. You may well sit their patiently waiting for them to shut up – but it is fine to ask them to stop talking, too.

People may not mention your child’s name, worried it may upset you but failing to appreciate that not mentioning them upsets you more – and after all, the worst has already happened.

People may not want to talk about your child with you, filling you with frustration. They were your beautiful, perfect child who you grew and love with every cell of your being, now and forever more. You want to talk about them, how proud you are of them, irrespective of the time you spent with them. This reticence from other people may lead to resentment.

It may lead to a feeling of isolation. A feeling that it may, as a consequence, be better to avoid certain people, certain places, certain situations not because you want to, but because you need to protect yourself from further hurt.

The knowledge that you are now ‘different’.

That is enough negativity for now. As I said, you will see the worst in people – and the best, too. The kindness of people can know no bounds. Compassion, empathy, the compulsion to reach out and help – the help you need, not what they think you need.

Those who will sit with you as you cry, as the cascade of tears fall, holding your hand and passing endless amounts of tissues..

And those people can often come from places you least expect; relationships can take on a new depth, friendships and acquaintances can be strengthened, new friendships forged often with strangers with whom you may now share a common experience.

Those who share the common experience, those who ‘get it’ are invaluable. It often does not matter if you have never met them, it does not matter if their child died in circumstances that are completely different – they understand. You may find you have a certain shorthand with them, and not having to explain is liberating.

You may feel the value of liberation: grief is exhausting. It seeps in to your pores, into your bones. The simplest of tasks can seem challenging; your memory unreliable, turning even the smallest thing that makes your life a tiny bit easier into a precious gem.

You may feel like you will never be happy again, never smile again. Indeed you may feel like you do not want to be happy again, nor smile again – or that you deserve to.

The feeling of guilt can feel all-encompassing. The knowledge that rationally, you know you have no reason to feel guilty – that you did everything you could, and would have done more, if only, what if – is irrelevant.

I still feel like I failed my child. I did not keep him safe. Even though I know, rationally, if he had not been born when he was we both would have died.

Emotional torment.

And the anger – oh, the anger. So raw, so visceral. Anger at the world in general, at the hand life has dealt you, at the world being so bloody unfair. Anger at those who embellish and become melodramatic over trivial everyday annoyances (no, spilling your coffee is not the worst thing ever.)

Anger at those who seem not to appreciate their children, take them for granted. But in the same breath, thinking you are glad that other people are blissfully unaware of such heartbreak.

More than a year on after Hugo died, I have learned to feel happy again. It is a different sort of happiness than before. A happiness borne out of different priorities and perspectives.

But that does not mean that I am better, or that my life is better. No, not by a long shot. I still get bad, low, devastating days as a result of a trigger, or of nothing at all. Those days can make me feel like I am back to the beginning, back to the darkest days, all my progress out of the window.

I have to remind myself I am not back at the beginning, that it is the fault of the path of grief. Grief does not progress in a straight, orderly line. It is a mass of intertwined squiggles that make no sense, with no end.

And that is part of the reality. Grief has no end. There is no better, only different.

You may discover within you a strength you wish had lain forever dormant. That strength comes from intense love, intense pain, and it can take on the world.

I am not going to tell you what to do, how to grieve. I cannot do those things, because while we may share a similar experience in common our individual journeys are so very personal.

But I would like to share with you a few points that have worked for me, take them or leave them as you will:

  • One day at a time.
  • Don’t expect too much of yourself.
  • Whatever is right for you, whenever is right for you.
  • Find people you can trust to confide in, or just to listen.
  • Be open and honest with your partner about your feelings, no matter how much it may cause extra tears – you need to be honest so you can support each other.
  • Find a way to express your grief – whether that is drawing, writing (on a blog or in a private journal), talking to someone, raising money for a charity.
  • Try to be gentle to yourself, and take time for self-care. Grief is exhausting, meaning you need to find ways to recharge your batteries.
  • Take time for your grief – ignoring it does not make it go away (as I discovered to my cost).
  • Being selfish when you need to be is acceptable – often life after loss is about personal survival.
  • There will be days when just getting out of bed is an achievement – and there will be days where you feel you can take on the world.
  • Bad days can come from nowhere.
  • You are not a bad person. You deserve love and happiness, even if it may take time to return, take a different form and be fleeting.
  • There is no ‘normal’, no better. Just different.

You will get there, Mama.

You can survive.

We are all here for you.

With love,

Hugo’s Mummy, Leigh xxx

What Happened at the National Maternity Review Team Listening Event?

Yesterday was the first listening event of the National Maternity Review, held at London King’s College.

The invitation, from the Chair of the review herself, Baroness Julia Cumberledge promised that the event would “…be pooling ideas to improve maternity services.”

And that “We are most anxious to hear from all those who have an interest in maternity services; the public, users, commissioners, professionals, and organisations who would like to contribute to our initial thinking. We believe there is much that is exceptional, good, kind, and sensitive to the needs of women and their families. But we also know that there are services which could improve and some which are deeply disappointing with issues that need to be addressed. At this early stage in our work, we do not have any answers but wish to hear from you and your colleagues about your experiences, your thoughts, views and opinions and some possible solutions.”

I was invited because of my work with #HugosLegacy and #MatExp. Hugo was of course present via his handprint on my necklace:

And I was keen to share to promote the post What I Want the National Maternity Review Team to Know

How did the event perform against these objectives?

Overall, very well. The room was full of a range of interested parties including consultant obstetricians, midwives, members of the Royal Colleges of Midwives and Obstetricians; various NHS organisations, members of organisations that had been set up in response to personal tragedy (such as the MAMA Academy and the Campaign for Safer Births whom I was pleased to meet but did not have enough time to talk to).

Julia Cumberledge introduced the event by outlining the scope of the review, which is looking at the maternity experience from conception through to six weeks after birth. The timescale for the review raised a chuckle…

Workstreams include choice, continuity, diversity, professionalism, culture, accountability (mutual respect between professionals and teamwork), levers (triggers and incentives) – and barriers.

The comms plan for the review includes visiting centres across the country so as many voices as possible can be heard.

I loved the ethos for the event:

Be compassionate

Be a friend

Have fun

Assume it’s possible 

And so we began with the first round table discussion, looking at issues and solutions.

A few points from the discussion (facilitated by Cathy Warwick) on our table include:

  • Women need individualised care within a system that genuinely supports the range and variety of experiences and needs women will have
  • Polarisation – high risk/low risk and between obstetricians and midwives – is very unhelpful
  • Connected with the above point, for better collaboration and teamwork between midwives and obstetricians – no ‘them’ and ‘us’. There is evidence to prove that training and working together as a team provides positive results.
  • Dignified care and safe care need not be mutually exclusive (contrary to what some of the polarised debate about where is ‘best’ to give birth may suggest)
  • Time for training – health professionals want to do the best they can for their patients, but are constrained by lack of time for training. Training on things like team working (such as cross over training between midwives and obstetricians so each can better understand each others’ perspectives) and effective communication would be invaluable.
  • Targets – such as C-section rates – are a barrier to women receiving care that meets their own individual needs.
  • Policies, procedures and guidelines are important of course, but there needs to be more encouragement for health professionals to use their own judgement to respond to women’s individual needs without fear of punitive action. This connects to issues relating to training and teamwork – enabling staff to do their jobs and giving them confidence in their practise – in short, empowering them to do their best.

Feedback from the other tables was insightful, including this point that being part of #HugosLegacy was music to my ears…

twitter

There needs to be a seamless care pathway to better meet the needs of mums whose babies are in the neonatal unit, as described in my post about what I want the review team to know.

Other points of insight included:

  • Need to make sure good practice can be shared across hospitals
  • Need to find ways to make sure care is women-centred – this goes back to tick boxes and things like C-section targets.
  • Need for better postnatal care.
  • Need for commissioning that is better connected between CCGs, local authorities, and NHS England.
  • Need to look at culture – acceptance that innovative vision is the way forward to make the changes that need to happen.
  • We need to manage risk, risk should not manage us. Antenatal education needs to empower women to make the right choice for them.
  • We need to eradicate concept of ‘high risk/low risk’.
  • Women and their families need to be more involved in the creation of pathways
  • Evaluation methods need to be more useful for service users – and the feedback meaningful.
  • A woman needs to be seen as a whole person, not a womb with legs – her emotional and psychological needs, for example, need to be considered too.

Three crucial concepts are: language, behaviour, and leadership.

(This is not an exhaustive list, and I may have missed things!)

There are a few issues that bear further exploration, for example: the remit of the review includes experiences up to six weeks after birth. This has the potential to miss two crucial issues: postnatal mental health, and the needs of mothers whose babies are in neonatal care, and/or who suffer a loss. The needs of these women extend well beyond the six week timeframe, and have long-lasting, serious consequences if those needs are not met.

I would be interested to see how the review incorporates these issues.

From a personal point of view, the event gave me a wonderful opportunity to catch up with and meet fantastic people whom I have got to know through social media. I won’t try to name everyone because I usually end up missing people out, but here are some photos…

Flo and I managed to stop talking long enough to take a photo

I loved seeing Alison Baum again (she’s CEO of Best Beginnings, creator of the DVDs for which people so generously donated money for Hugo’s first birthday) and meeting Heidi, founder of the MAMA Academy, of which I am proud to be an ambassador.

Meeting and having a chat with Jacque was fab

Gill and I enjoyed a lovely evening chatting. We forgot to get a selfie, but I have a picture of my pink shoe on my pink bag…

Flo took a JFDI #MatExp view to sharing the campaign, with one of the brilliant graphics and giving people an overview of the Whose Shoes game.

I may be biased, but the innovative, grassroots, no-hierarchy approach of #MatExp is key to the success of the review. It is heartening to see there is interest:

The event nearly ended in tears for me, however. Chatting about #MatExp to two ladies at the end of the event led to me sharing my own experience. Asking how long Hugo lived for (35 days), they commented that it was ‘quite a long time’. I disagreed, saying that it was not nearly long enough. Objectively, I know that as Hugo was born at just 24 weeks the fact I got any time with him at all was miraculous, and I am very grateful for every precious moment I had.

But a tip for others when talking to a bereaved mother: DO NOT try to tell the mother that they are in any way ‘lucky’, and especially DO NOT persist in your point of view once the mother has expressed upset.

The women did apologise, saying it’s difficult to know what to say to bereaved parents. Another tip: empathy is key. ASK the parent how they feel, and if you really don’t know what to say, STOP TALKING.

Considering the breadth of experience of women – and men – attending these events will have, taking a moment to consider sensitivity, as well as sensible things to say (and not say!) is crucial.

Fortunately, it did not mar the very constructive and productive day. I hope we can see our thinking translated into real action and change for women and the staff who care for them.

Next steps are…

and if you want to be involved…

 

 

Mums' Days

Moving Forward, Not Moving On

Moving forward. Moving on.

These terms sound pretty similar, but they are different, very different – and the distinction in respect to living with grief is crucial.

‘Moving on’ implies putting something behind you, letting something go. The effort of trying to move on from a relationship that has ended, especially one that has ended acrimoniously.

It seems that ‘moving on’ has positive connotations. Moving on means you are being strong, courageous, putting the negative stuff behind you and facing the future with a positive outlook and a bright smile.

Many bereaved become frustrated with the notion that we should ‘move on’. Observations such as in this recent published research bearing the headline that “two years, one month and four days is the time it takes to feel better following bereavement” is incredibly unhelpful, implying that there is some kind of time limit on grief.

And what does ‘better’ mean, anyway?

That you’re better than you were in the raw early days? As in better able to function as a human being once the shock has worn off.

That your behaviour is ‘better’ – or more favourable – than the earlier days? This is often more about others wanting to be able to take away your pain – well meant but futile – as well as about other people’s discomfort with responding to your pain. Grief can make the bereaved rather ill-tempered and unreliable for various reasons. We don’t like that behaviour either but we have little choice but to find a way to live with it.

That you’re ok now? Life carrying on as normal. Phew, that’s over, as you were!

‘Better’ is such a subjective term, grief such a personal journey that is different for everyone its use in such an article is pointless.

(The article is actually more helpful than the headline implies, arguing the case for more bereavement support and for people in general to feel more comfortable talking about death, but which do people remember more? The hyperbolic headline, or the boring old facts in the article?)

Perceived time limits on grief can lead to comments such as “Ooh, she never got over the loss of [child, spouse, parent etc]”.

Well, the truth is you don’t. Perhaps some people might be better at hiding their pain, and sorrow. They might put it away in a little box inside their mind, but just because it is not talked about, it does not mean it has gone away.

I love this quote from the wonderful Megan Devine of Refuge in Grief. She organises the invaluable Writing Your Grief course I did a few months ago. She hits the nail right on the head.

‘Moving on’ from losing Hugo has never been my goal. Hugo is my child. I loved him for every second of his life, and I shall love him for every remaining second of my life.

There is no moving on from that.

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For the first few months, my priority was survival. There were times when I felt even simple survival was beyond my grasp, such was the pain that I feared would never, ever end.

I wanted to find a way to move forward with my life. To incorporate Hugo in to my every day life in spirit, as I would have incorporated Hugo in to my life as the mother of a living baby.

It is why I work so hard on Hugo’s legacy. I am connected to him every moment of every day, I know, whether or not Hugo’s legacy exists.

I do not need to prove my love for Hugo, but making a difference for others is my way of carrying my love for him.

It gives his life and mine meaning.

Gradually, I have learnt to feel less guilty about feeling happy, or doing something just for me. A smile on my face does not mean I feel ‘better’. I am all too aware that a bad day or a trigger is always just around the corner, and I have an armoury of self-care tactics to try and manage them.

The image below, from Tonkin’s Model of Grief is a succinct representation about moving forward with grief.

Tonkins

Image shared by the Grief Geek on Twitter

The top row of jars on the top represents the popular view that over time, grief shrinks, becomes less overwhelming, takes up less space in our lives.

The bottom row shows the reality: that grief stays more or less the same over time. The shape of grief – the way it looks from the outside – may change a bit, but ultimately it’s the same size. Grief remains the same even as our world after bereavement grows larger.

To sum up, the diagram is a brilliant visual way of demonstrating that we don’t ‘get over’ or ‘move on’ from the loss of a loved one. Instead, we find a way of carrying the loss with us, living with our grief, dealing with our triggers – of moving forward with our lives.

‘Moving forward’ is a phrase I prefer to ‘new normal’. What is ‘normal’ anyway? Life evolves, ebbs, flows. It is not that you move from one ‘normal’ to another ‘normal’ and stay there.

‘Moving forward’ requires resilience. Resilience is the understanding (learnt the hard way) that life will not always go your way, that crappy stuff will happen to you and to the ones you love, but finding ways to not let it keep you down. Finding ways to keep you moving forward.

My cheeky Hugo

My cheeky Hugo

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

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.

The Loneliness of the Empty-Armed Mother

Yesterday was a bad day. Not for any particular reason. Grief can be lonely – even in a room full of people, fellow grievers say. Yesterday that loneliness, combined with anger, resentment and deep sorrow at being an empty-armed mother threatened to erupt.

Stumbling upon a post by a fellow mother with no living children was a huge relief. Her words really resonated with me.

This excerpt, about what it is like to live as a mother with no living children is especially poignant:

While you’re reading this I want you to take a moment to close your eyes and think of the moment you felt most unwelcome, out of place, vulnerable, and confused.  Think of a time where your identity was stripped from you. When you lost the single thing that gave you hope, purpose, and made sense of your life. Where everything you once thought your life would be, suddenly wasn’t. I know it’s a scary place to go back to – no one likes revelling in their most uncomfortable moments, but for me, just take a second and breathe, and remember when life violated you on a primal level.

You got it?

That’s what life as a Mother with no living children feels like. Every. Single. Day.

I like the author’s softball analogy. Too often I feel stuck in the fielders’ position, away from the action.

Don’t get me wrong – I have many wonderful, kind, sensitive friends, both in real life and on social media. You all remember Hugo, mention his name regularly, and doing that give invaluable reassurance that he will never be forgotten. I am grateful to and appreciate every single one of you.

Thankfully, very few of you understand, and I mean first hand, how it feels to lose a child.

Even fewer know how it feels to lose your only child.

To be a parent with no child to care for. No living child to bestow so much love on. A house that is too quiet. A home bereft of toys and baby paraphernalia.

As I have mentioned in similar posts, there is no better or worse with baby and child loss. There are no points to be allocated, there is no ranking system.

Me and Hugo

Me and Hugo

I miss – without ever having truly experienced it – the camaraderie parents of living children share. Trading stories of sleepless nights, poonamis, tantrums. Proudly sharing the good stories, too.

It is why such posts, and sites such as Still Mothers are so valuable to me.

Hugo was born at 24 weeks, so I am a mother with little knowledge of the discomfort of carrying around a big bump. I missed feeling all the big kicks and turns of Hugo in my tummy. I missed waiting for 40 weeks, wondering what birth would be like.

I miss taking my baby home. Being a bewildered, scared new mother rather than a bewildered, scared bereaved mum.

This is something that I deal with most days. It’s life, I have to. It’s either that or hide under the duvet. A residual sense of guilt that I am alive when Hugo is not (and my own two weeks in hospital testament to how close I came to not being here myself) is motivation, too.

As the author of the post says about her daughter I fight for Hugo, defend his memory, and make sure I am the kind of woman he deserves to have as a mother.

It is why I work so hard on this blog, on Hugo’s Legacy. It is why I cannot help but take personally any incidence of feeling like Hugo has been ‘left out’ of something.

I’m not fishing for compliments. My readers leave kind comments, such as on this post. Many of the comments are humbling.

I don’t always feel like the woman described in these comments. Like yesterday, I was tired, so tired from grief, from fighting to show that Hugo matters, to feel that I am still a mother. I wanted it to all go away, to be better, to have my son back. I wanted to be sleep-deprived, and with toys all over the house.

Knowing that is impossible does not make me want it any less.

Having to acknowledge that is impossible can feel like a rude reminder, a painful poke in the ribs.

I am unlikely to ever say that these feelings are ‘ok’. They are not, because the reason those feelings are with me are very much not ok. That said, I am accepting, acknowledging that sometimes I am allowed to feel sorry for myself, to take time out.

That’s what I did yesterday. Retreated to the sofa with the cat. Avoided social media. Received kind support from lovely people.

Recharged the batteries, ready to survive another day.

Still an empty-armed mother. Still in a fielding position. But feeling better able to cope with that.

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