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.

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

My #MatExp Action – Bereavement Support for Parents

STOP PRESS!

If you are on Twitter, please join #PNDHour on Wednesday June 3 between 8pm and 9pm. I will be co-hosting a chat about baby loss support. All welcome.

Hugo’s Legacy focuses on improving information and communication, especially for parents who have lost a baby. #MatExp is a powerful grassroots campaign that aims to identify and share best practice in maternity services across the country. I am so proud to be helping lead #MatExp; it is a chance to help #HugosLegacy make a real difference.

The #MatExp campaign has grown so much since its official launch at NHS Change Day in March 2015 it now has its own website to store all the ideas, activities and actions. The website has been a labour of love – I started building it only last Wednesday – (today is Monday!). It has been a wonderful example of group working and crowdsourcing with inspirational and passionate people.

June is a month of action for #MatExp, and people are being asked to share what their action will be by posting a selfie. Here is mine:

The loss of my son Hugo in March 2014 has affected me so profoundly my action focuses on bereavement support. Nothing could have been done differently in either my or Hugo’s care from a clinical perspective. However, better communication, especially at the end of Hugo’s life could have made an already heartbreaking situation less stressful. I have written previously of how the news about withdrawing Hugo’s treatment was given.

To compound that finding support to help us come to terms with our loss, was incredibly difficult to source, as I have written about in this post.

A recent discussion on the #MatExp Facebook page revealed that our experience is sadly not unique. The #MatExp community is writing blog posts to summarise the discussions and suggested actions.

The immediate action for bereavement support is one that can be done by anyone, anywhere, anytime – and costs nothing.

• Acknowledge the baby the parents have lost. If you know the baby’s name, use it. If you don’t know the baby’s name, ask. Take the parents’ lead on whether or not they want to talk about their loss. Try not to worry about saying the ‘wrong’ thing. The worst thing you can do is to skirt around the subject, or ignore it completely. To ignore the baby is insulting and upsetting to bereaved parents.

Longer-term actions include:

• Clear, concise, sensible, and up-to-date information to be provided to bereaved parents when they leave the hospital after the death of their baby. Parents need reassurance about the emotions they are likely to feel, and a few pointers about how to navigate grief, especially during the raw early weeks. The information also needs to clearly state how the parents can access appropriate support as and when they are ready.
• Access to counselling support. Too many bereaved parents have had to fight for the counselling and psychological support they need – or have gone without. Some hospitals do offer counselling services: hospitals need to make clear to parents that this is available, and how to access it. Funding issues mean that not every area is able to provide these services, but charities thankfully do exist to fill the gap. Hospital and GP practice staff need to know what support is available locally so they can signpost parents appropriately, or where appropriate make referrals for them. Leaving bereaved parents to source their own support at a time when they are least able to have the tenacity to deal with ‘the system’ is unacceptable.
• Training in bereavement care for health professionals. Surprisingly, many don’t receive this as standard practice. The vast majority of health professionals are caring individuals, but a lack of appropriate training means many are unsure about how best to deal with bereavement, which may lead them to saying things that are less than helpful to parents. What is said to parents at this sad time stays with them forever, so the importance of this training cannot be underestimated. This training should be extended to all staff involved with maternity/NNUs (including admin, housekeeping et al) to help prevent unnecessary upsets.
• Debrief/support to care for the needs of maternity, obstetric and NNU staff after the death of a baby. These staff are deeply affected by the loss of a baby in their care.

For my own action, I am going to be continuing to encourage everyone – health professionals and the wider community – to talk about baby loss – #saytheirname.

I will do this by:

• Continuing to talk openly and honestly about my own experiences on my blog, and on social media;
• Continue to seek opportunities for giving talks to health professionals about Hugo and our story, and for writing guest posts on relevant websites to help health professionals learn from a first-hand experience;
•  Helping empower other bereaved parents to talk about their experiences, to help share good practice.

I have already made a start on the first of the longer-term actions: I created simple bereavement information for the NNU at St George’s, where Hugo was cared for and will be seeking opportunities to share this more widely.

In addition, I am writing a book about Hugo, and our first year after our heartbreaking loss.

Me and Hugo

Parents suffer enough when they lose a precious baby – anything that can help make life after loss a little bit easier is invaluable.

I shall be keeping you up-to-date with progress on #HugosLegacy, #MatExp, and #SayTheirName – watch this space!

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

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

 __________________________________________________________

I Am The Mother of All Mothers

The Mother of All Mothers.

A message of hope for the grieving heart.

This beautiful book, by fellow bereaved mama Angela Miller delivers on its promise.

You Are The Mother of All Mothers, by Angela Miller

While a year on from Hugo’s death the grief is not as acute or raw as it once was, the pain remains. While, a year on, the feelings of guilt: that I did not do enough to protect Hugo, or to stop him dying, or that my illness and his death were in some way a punishment for misdeeds have diminished, those feelings remain.

I had bought spot for Hugo on the memorial page (with a copy of the book) at the end of last year, and eagerly awaited its arrival.

Almost as if it knew when it was most needed, the book arrived on a day shortly after the first anniversary of Hugo’s death, on a day when the presence of this ever-lasting grief and the knowledge that the life of a bereaved mother is forever was a heavy, exhausting weight. As Angela says in the book, “It is the heaviest, most torturous burden there is.”

Me and Hugo, on the day he died.

The book is simple, yet profound. Simple is good for a brain steeped in grief-fog. Too many books about child loss waffle on and on, and are overly sentimental (‘unicorns farting rainbows’, as I like to call it) meaning I gained little benefit from them.

Angela’s short but so sweet nuggets of wisdom act, as promised, as a balm against the feelings of guilt, and the seemingly bottomless pit of pain.

The profundity of her words cut through my heartbreak, fought through myexhaustion to soothe the very facets of what hurts the most. Words that can come only from a mother who has also lost a child, who understands the depth of the hurt, the pain, the eternal torment.

Every page is meaningful, but I would like to share with you pages that I found particularly resonant:

To choose the pain all over again.

Keep breathing, keep fighting, keep believing.

Superhero Mama.

Angela’s words of reassurance: that Hugo’s death is not my fault, it is no punishment for misdeeds, that I could not possibly have done more were words I very badly needed to read. While I have been told similar words countless times since Hugo’s death, they reached those parts of my heart, my soul, my mind like the biggest, most comforting hug.

Short, simple, succinct, pulling no punches – from someone who truly gets it.

Every page is beautifully illustrated with calming colours.

It is a book to sit and read in the future for comfort and hope, when such words are most needed. For this journey of grief is forever.

I am proud that Hugo’s name features on the ‘In Loving Memory of…’ among other much-loved, much-missed children from all around the world.

Hugo’s name on the ‘In Loving Memory’ page.

I first became aware of Angela and her work at last year’s Butterfly Awards (I was honoured to be shortlisted in the author/blogger category). Angela won the online support category for A Bed For My Heart, and her acceptance speech (read by a toastmaster; Angela lives in the US) was utterly beautiful. Paraphrased from memory, it read “There are no winners in baby loss. Each of us has to watch other children exceed the age of our lost babies, and other children doing things our babies will never do.”

Following the event, I checked out Angela’s Facebook page – anyone suffering the heartbreak of child loss may find the words of comfort and range of other plentiful resources helpful.

While nothing can ever take away the pain of not having Hugo in my arms, this book is something that eases that pain, just a tiny bit. Anything that eases pain of this magnitude is a great gift, a comfort, a balm for my broken heart.

It gives stokes my reserves of inner strength, will help rekindle my fighting spirit, encourage me to be more kind to myself.

For I fought for my child, I fight still.

I love Hugo in death as I did during his life.

I am a superhero Mama.

I am the mother of all mothers.

A Celebration of Life

When Hugo died, we were disconsolate, heartbroken.

Our son had changed our lives, and shown us what true love is.

We knew that at his funeral we wanted to celebrate his life. What Hugo meant to us, what Hugo had taught us.

To show off our baby boy like the proud parents we are.

Hugo

While we are not religious, I had an urge to hold Hugo’s funeral at our local church. It is the same church where I was christened. The church turned out to be a good choice: the curate was lovely and very helpful.

The funeral directors were also incredible. There wasn’t enough they could do for us. Hugo’s funeral was held on a Monday, and they opened specially for us the weekend before so we could spend time with Hugo in the viewing room.

I cuddled and sang to Hugo, and admired his beautiful face. Both Martin and I read to Hugo. We left a range of toys and books in his casket with him, as well as some photos of us, and letters we had written to him. He also had a star scarf that I had in my wardrobe wrapped around him, and some scattered stars (of course!).

Hugo looked so incredibly handsome. Like he was just asleep.

Some of the toys, photos, and books that keep Hugo company in his casket.

On the Sunday afternoon I had my final cuddle. I was so reluctant to let him go. I knew he was dead of course, but we had such little time together and I wanted to make every moment matter. I gently stroked his face, and his dark hair – so beautifully soft. It is his warmth while he was alive I try to think of, not how cold he was then.

We issued a general invitation to the church funeral service, with close family only at the burial, followed by a wake at our local pub.

Our guests were asked to wear bright colours – no black. We also invited them to wear their team’s football shirt if they wished. It was about celebrating your individuality, being who you want to be, in honour of Hugo’s determination.

I wore a bright pink dress. The dress was special because I had worn it during a cuddle with Hugo, him tucked down the front. Martin wore a brightly-patterned shirt he had bought specially; he was quite particular about it. While shopping in John Lewis, the shop assistant making small talk asked what event the shirt was for. I imagine he was expecting to be told it was for a wedding, or garden party or something. He responded well when told the shirt was for our son’s funeral.

The day of the funeral was a beautiful bright sunny April day. The funeral car arrived with Hugo’s blue casket, and the flowers. We all walked behind the car – the church is only around the corner, and I needed the walk, the air.

Martin carried Hugo’s tiny little casket into the church. I followed behind carrying Hugo’s star-shaped flower tribute made by a local florist – it had exceeded my expectations.

A close-up of the star.

We couldn’t believe there were more than 60 people in the church. The number included our family, friends, work colleagues, and people we hadn’t seen for years. Daily updates about Hugo’s progress had been shared on Facebook, and our tiny boy had captured so many hearts.

Martin and I both wanted to read what we had written for Hugo. I had written this poem, and Martin had written a eulogy describing how much he loved Hugo, what Hugo had taught him, and how he hopes Hugo is enjoying his adventures up in the stars. We took in in turns to read lines so we didn’t become too overwhelmed.

Uplifting hymns, such as ‘Lord of the Dance’ were sung, and we had a contemplative moment listening to Israel Kamakawiwo’ole’s hauntingly beautiful version of Somewhere Over The Rainbow.

We had to travel to the cemetery for the burial. The burial is not something I like to think about very much: the hole in the ground, my baby being lowered into it. Wracking sobs from me.

It was the first time I had seen the baby and children’s section at the cemetery. I was overwhelmed at the number of graves. So many. Too many.

Meanwhile, our guests had gathered at the pub. Our pub doesn’t usually open on weekday afternoons, and nor does it serve food, but he kindly opened specially and provided a buffet for us.

The remembrance book.

Our guests, while drinking and eating, were also busy drawing and writing with coloured pens in a remembrance book I had provided. It is a beautiful book, blue hard-backed, with blue ribbon ties. People were invited to write about Hugo, or about life in general.

The book is an emotional read: I feel so proud that my tiny boy, who weighed no more than a tin of baked beans and who so few people were able to meet in person, had touched deeply so many people’s hearts. Comments included how Hugo had made them laugh with his antics; how impressed they were with his physical strength, and his resilience. How they will never forget him.

These are small, but valuable comforts.

The inside pages of the remembrance book.

The day of Hugo’s funeral was one of the most challenging of my life.

We celebrated our son’s life. The life of a special boy whose impact and legacy belies his size, and his short life.

That thought is the one about that day that I try to remember.