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.

What a Week: Time to Refocus

What a week! There are many lovely and exciting things to tell you about, dear readers.

But first, a moment of reflection. I’ve been distracted from my blog (I’ve really missed it!) and from my usual self-care techniques by some upsets with people about whom I care deeply. The upsets were on social media – as wonderful as social media is, misunderstandings are bound to happen from time to time. I’ve been at the receiving end a number of times and whenever the other person has apologised, I’ve acknowledged that while their comment hurt, I know it was unlikely to be intended and accepted their apology.

Anyway, this time my words were the cause of unintentional upset and for some reason my apology seemed to make it worse. To cut a long story short, I made myself physically ill with the stress of it all.

So, I am taking a step back and reassessing what is important in my life, and what I need to focus on. Firstly myself: I reminded myself of the very wise advice I wrote in this post. By trying to make other people happy, I wasn’t meeting my own needs – not by a long shot. I am who I am – candid, honest, enthusiastic and passionate about getting on and making change for other people’s benefit. I have a dry sense of humour, and with that I am kind, considerate, compassionate, and empathetic. I know I am a good person, I am happy with who I am and my motives for doing what I do.

My first step towards self-care was a lazy morning and a long cuddle with Fat Cat that we both thoroughly enjoyed.

The reason I mention this is the same as I mention anything on the blog – not to ‘pick on’ anyone or to make them feel bad, but to make a wider point about reflection and thinking differently. I am all about the bigger picture.

I am now doing my Taylor Swift dance, shaking it off and focusing on the positive. Ready? Let’s go!

Channelling the messages from my fab business cards (except for the ‘fat’ part, of course).

Work

My phased return to work continues to be much better than I anticipated, I am relieved to report. My manager and colleagues are wonderful; very kind and supportive, and understanding of my needs. Colleagues have welcomed me back, telling me I have been missed, and that they are glad to have me back. No one has pried, which has really helped me manage my feelings of anxiety and vulnerability.

Another huge positive is that I am helping lead a project about my great passion – patient experience. It’s really exciting, and it’s great to have something to feel excited about.

There is still a long road ahead of course, but so far so good.

Neonatal Parents’ Meeting

On Wednesday I went to London for a Neonatal Parent Advisory Group meeting. It was tough – there were tears from me – but such a constructive meeting. Sadly, the other parents who attended have also experienced loss; I appreciated being, for the first time, in a group of people who really ‘get it’. We are going to be working together to use the benefit of our experiences to help other families, which feels to me to be a privilege.

Maternity Strategic Clinical Network Meeting

That meeting was followed by attending this meeting to talk in front of around 100 people about Hugo’s Legacy, my involvement in #MatExp, and my experience of a Whose Shoes workshop as part of a presentation about the campaign and the pilot workshops.

Talking about Hugo’s Legacy and MatExp at a maternity Strategic Clinical Network conference.

Don’t tell anyone, but my week had been so busy I prepared my talk 30 minutes previously – I think I did alright. Lovely people came up to me afterwards to say Hugo’s story had really moved them, and I am also going to get involved with the work of the strategic clinical network to help shape better support for women who have similar experiences to mine.

I also really enjoyed the chance to have a face-to-face chat with #FabObs Florence Wilcock, after spending so much time communicating online. I have just realised we should have got a selfie!

Butterfly Awards

The wonderful Mel, who is behind the Butterfly Awards has invited me to give a speech inspiring other bereaved parents to share their stories, and to highlight why people need to put their temporary discomfort to one side and take the time to really listen to the stories. The invitation came about my latest #MatExp action, and I was honoured to be asked to and to accept.

I am also honoured to be shortlisted in the author/blogger category in the awards for the second year running. I know you will all be delighted to learn I’ll be asking you to vote for me again in a couple of months’ time!

My latest #MatExp action selfie

Other exciting things…

It’s naughty to tease I know…but I have been invited to some other things that I can’t tell you about yet, but I will as soon as I am able!

Self-Care

The kind people at Lumie have sent me a SAD and energy desk light to review – the idea is it helps prevent the slump that usually prompts me to hunt down some chocolate. I’ll be letting you know how I get on.

Most excitingly, I’ve been sent a colouring book to review! It’s a hard life, but someone has to put themselves out…and it’s a great reason to ensure sure I definitely make time for self-care.

I’ve also had my hair chopped. It had been getting shorter and shorter over the past year – the new ‘do is a braver version of the graduated bob I had last time. I love it – it is the perfect compromise between a bit of flattering face-framing length and hassle-free lack of length.

The new ‘do from the side.

Phew! Right, time for more self-care – and to make sure I have energy not only for the things I need to focus on, but BritMums Live too! I’m very excited to see all my friends.

 Word of the Week: phew!

Sunday Thought 26/04/15

We Brits are often perceived as being reserved. The ‘stiff upper lip’ must always be preserved, no emotions betrayed.

How many times have you apologised for an outburst – whether that outburst was of laughter, tears, or anger? If you are anything like me, it will be more times than I can count or remember.

It’s a bit daft, really. We are all human beings, and we will often have an emotional response to things. We should never apologise for being human (unless someone is hurt as the result of an angry outburst, but that’s slightly different).

Thankfully these days showing your emotions is acceptable – and in some situations even expected. I’m glad about that.

As this lovely quote shows, there is nothing wrong with showing your emotions. Indeed, showing your emotions shows that you care. It shows that you have a big heart.

I wear my heart on my sleeve: I will cry when something upsets me – and with joy. I will laugh heartily when something entertains me. I can be quick to show anger when someone has upset me, or someone I care about.

Freely demonstrating those emotions makes me, me.

I am (I hope you will agree) kind, generous, a good listener, with a strong sense of empathy, and fairness. Those qualities, I believe, go hand-in-hand with sensitivity and being able to show emotions.

I also believe we need more of these qualities in the world – and for them to be demonstrated more freely. For people to understand that showing emotion is a sign of strength, not weakness.

That means I won’t apologise for being sensitive or emotional (unless I unintentionally upset someone, of course). I am full of passion, with a big heart, and I will continue to show it.

What do you think of this quote?

Have Courage, Be Kind: This Is Forever

One year ago my life changed completely, utterly, irrevocably.

Changes thrust upon me by the death of my only child, and the threat to my own life.

One year on from Hugo’s death, from my illness I can say I have survived. Or should I say surviving. This is forever.

In the earliest days after Hugo’s death, parents who had lived through similar grief told me the pain would diminish. Not get better as such, just become different. They are right: the pain has diminished because it is no longer that raw, all encompassing agony that made it impossible for me to smile, laugh, or think about anything but Hugo. It has evolved into a different sort of pain. The pain of absence, of loss. A shadow that is always over me, a deep pain in my chest, a constant ache, a fog.

The pain too, of knowing that as a bereaved parent, I will always stand apart in some way from other people.  The irony of knowing that in so many ways it is good to be different, that in so many other ways I celebrate diversity, but there is little to celebrate about what make me different to other mothers, the mothers who have never lost a child.

“How many children do you have?” Will never be a simple question to answer. That is despite preparing a standard answer: that answer is likely to change according to the context, the situation, how I think the person may respond, how I am feeling, how much I feel like talking about it all.

While I talk openly on my blog about HELLP syndrome, Hugo, his life, his death, and my grief here I am in control. On my blog I have the time and space to consider what I want to say, how much I say, and how I express it. My readers have the time and space to digest what they have read before commenting, should they feel they want to (there is no obligation). Or, they can walk away (close the browser) and I am none the wiser. In the virtual world no awkward silences, no struggling for the right words to say, no offence caused or taken. Much easier than in real life.

Hugo, hanging out in his incubator.

One year on, I am exhausted.

Grief is a heavy burden to bear. Getting up in the morning, putting one foot in front of the other. Finding my way in this new life, finding a new direction, things to feel positive about.

Fighting is exhausting.

Fighting those who were unable to accept that their response to my complaint about things that should not have happened was unacceptable, flippant. Having to meet with them, reliving the trauma, to help them understand.

Fighting to get the support I needed, through the treacle of a system so difficult to navigate, professionals with no idea of what to do with me, who told me ‘God will give me another baby’, and in one letter described me as ‘having trouble getting over the loss of her dead baby, Hugo’. While trying to get a satisfactory resolution to a complaint receiving emails from a senior professional that contained content so obtuse they were farcical.

Fighting the urge to respond premature baby success stories that say all you need is hope and love. Fighting the urge to write, in capital letters: “Nonsense! If that was the case a bouncing baby Hugo would now be in my arms!”

Always fighting.

So often upset.

Upset caused by an organisation that should know better. A survey about premature babies’ involvement in clinical trials that asked questions assuming only a positive outcome. The staff failing to appreciate not all babies survive.

Trying to remember the upset is usually unintentional. The upset is caused through lack of thought. Usually.

Exhausted by pointing out, often, what should be blindingly obvious if only people thought a little harder. Had more compassion, empathy. Were a little more human.

Exhausted because of being fuelled by anger and frustration at things that should have been done better, still should be done better. Why don’t people get it?

My life does not look how it should. Anger at the world, at the injustice, at specific people and processes for being utterly inept.

One year on, I have had enough of the life of a bereaved mother. Irrespective of whether Hugo has any little brothers or sisters, there will always be one child missing.

Stop the world, I want to get off. But I know that is not possible. This is my life.

Hugo enjoying a cuddle with me.

So what do I do?

Channelling, again, the wise words of Yoda:

Fear leads to anger

Anger leads to hate

Hate leads to suffering.

Being in a constant state of anger, frustration and hatred is not good for me. It leads to suffering.

My work making a difference to other families in Hugo’s memory will not stop, cannot stop. But I need to ease up. Try to look at things differently.

At the weekend I watched Cinderella at the cinema. Her mantra is ‘Have courage, be kind’.

Courage I have in plentiful supply. Particularly when it comes to fighting, as I have discovered. Kindness towards others comes fairly easily to me (unless you are one of the people I am fighting – but even then I fight with words, eloquent emotion rather than actual fighting).

Kindness towards myself is something to work on. Self-compassion. Giving myself a break. Knowing when to ease off.

My life is changed completely, utterly, irrevocably. One year on, I am exhausted by it all.

I have courage I need it not only for the fighting, but for the future too. Kindness towards others – because kindness is best, and right – towards myself as well as others.

This is forever.

Comfort In, Dump Out

There’s a saying about the true nature of people being revealed as the result of a life-altering event.

It’s true: the heightened, intense feelings of such times push everyone to their limits emotionally.

Some people don’t know what to say. Some people say something insensitive.

Such responses are partly a result of a society that does not like to talk about death openly, or honestly discuss anything unpleasant. Far better to change the subject to avoid personal discomfort. An added dimension to this is that discomfort can lead some people to make the issue about themselves.

I was fascinated to find the Silk Ring Theory. The story behind it is this (from the LA Times):

When Susan had breast cancer, we heard a lot of lame remarks, but our favourite came from one of Susan’s colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn’t feel like having visitors, and she said so. Her colleague’s response? “This isn’t just about you.”

“It’s not?” Susan wondered. “My breast cancer is not about me? It’s about you?”

The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie’s husband, Pat. “I wasn’t prepared for this,” she told him. “I don’t know if I can handle it.”

How did these anecdotes make you feel? If you have suffered a bereavement of someone close, or have experienced a serious illness such comments may feel familiar.

There is a diagram to go with it:

The idea behind the theory is that the person who has suffered the bereavement, or the person experiencing the illness (or whatever the crisis is) is at the centre. All the people in the outer circles offer comfort to the people in the inner circles. The people in the outer circles don’t trouble those in the inner circles with their own distress about the situation.

Put in black and white like that, it seems perfectly simple, doesn’t it? Most of us would like to think that we would do everything possible to help a loved one in crisis in any way we are able to.

Despite that, comments like the ones in the anecdotes above tend to slip out. That doesn’t make them bad people: they probably don’t realise the implication of what they are saying, that they are making it about them. We’ve probably all had a ‘speak first, engage brain’ moment at some point.

The trouble is, when you are in the middle of the crisis, or when the bereavement is fresh and raw it is possible (likely!) you will receive a tongue lashing if you say something insensitive or self-centred. It can strain relationships and cause rifts. You just don’t need that extra stress and upset at such times.

My experience of bereavement, losing my baby son Hugo was that I was distraught, heartbroken, and I felt in shock for several months. Those early months were a matter of survival, doing what I needed to do to get myself through the days. I was not able to take on anyone else’s grief, sorrow, or feelings about what had happened. I was completely self-absorbed (as I had a right to be). The world outside my grief seemed unreal. I needed to be wrapped in love, with no judgements, opinions, or unwarranted advice. I needed people to understand that I was angry – not with anyone in particular, but that I was furious with the world for how bloody unfair it was my son had died.

On the whole, I received wonderful support from those close to me. I am so grateful for that.

Since Hugo died, I have had an iron grip on controlling things in my life. It’s a natural response to my life crashing down around me, events over which I had no control. I fell in to a habit of seeing and talking only to those who didn’t treat me with kid gloves, and would allow me to do what I needed to do without judgement. I would do anything to avoid additional upset or stress.

I read an article a while ago – I can’t remember where it was from so I can’t link to it, but what it said stayed with me. It talked about the loss of relationships – with friends, family members, colleagues etc – after a bereavement, in this case losing a young child. The article’s author – let’s call her Mary – said in their experience, people fell away over a period of time, stopped getting in touch because they didn’t understand Mary wasn’t being unreliable for cancelling plans, not showing up to gatherings, or being rude for not proactively getting in touch. Mary was surviving possibly the worst thing anyone can imagine.

People need to hang in there for those suffering a trauma. Be patient, wait until the fog has lifted, let them know you’re there for them without expecting a response, or anything in return (this is especially important on important days like birthdays and anniversaries). Don’t expect things to return to ‘normal’. While the Marys and Susans and Leighs may return to every day life after a time, they will never be the same again – the experience will leave them forever altered.

Try not to  worry about saying the ‘wrong’ thing to those at the centre of the circle. Unless you say something deliberately insensitive, there is no lasting harm done. Remember that your discomfort will last just a few moments, compared to a lifetime of sorrow. If you do get your head bitten off, cut the person some slack, show compassion and empathy (without making it about you!).

Reach out, send comfort towards the centre of the circle, and dump your own problems in the opposite direction.