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.

Sunday Thought June 14, 2015: Post-Traumatic Growth

Sunday morning seems to be a good time for resonant posts to be shared on Facebook; posts that prompt lots of thought and make me a bit emotional.

Last week was the video of Alison Cameron’s speech, and today it was this post about post-traumatic growth (PTG). To quote the article, PTG is “the phenomenon of people becoming stronger and creating a more meaningful life in the wake of staggering tragedy or trauma. They don’t just bounce back—that would be resilience—in significant ways, they bounce higher than they ever did before.”

This was the part that made me especially emotional:

The term PTG was coined in 1995 by Richard Tedeschi, Ph.D., and Lawrence Calhoun, Ph.D., psychologists at the University of North Carolina, Charlotte. “We’d been working with bereaved parents for about a decade,” Richard says. “They’d been through the most shattering kind of loss imaginable. I observed how much they helped each other, how compassionate they were toward other parents who had lost children, how in the midst of their own grief they often wanted to do something about changing the circumstances that had led to their child’s death to prevent other families from suffering the kind of loss they were experiencing. These were remarkable and grounded people who were clear about their priorities in life.”

None of these parents, Richard stresses, believed that their child’s death was a good thing. They would have given up all their newfound activism, insights and altruism, their re-ordered sense of what really matters in life, to have their child back. “The process of growth does not eliminate the pain of loss and tragedy,” Lawrence says. “We don’t use words like healing, recovery or closure.” But out of loss there is often gain, he says. And in ways that can be deeply profound, a staggering crisis can often change people for the better.

Unlike the parents described in the article, nothing could have been done to have prevented Hugo’s death. However, as I have said numerous times, there is no ranking system. I might not be able to prevent other families suffering the same kind of loss (while I have been working to raise awareness of preeclampsia and HELLP syndrome, they are both thankfully very rare), but I can help prevent other families suffering the kind of additional, avoidable pain and distress mine experienced because of a lack of appropriate support.

That is what Hugo’s legacy is all about.

Me and Hugo

Me and Hugo

I love that the quote states they don’t use words like ‘healing, recovery, or closure’. In my view – and shared by many other bereaved parents – that these things are not possible.

We know that nothing will or can bring our children back. Things may, over time feel ‘better’ but they will never ‘be better’. We may seem to have ‘recovered’ outwardly, but the grief is always lurking beneath the surface, ready to re-emerge without warning. There is no such thing as ‘closure’ – Hugo will always be missing from my life, I shall always love him and miss him with all my heart.

Nothing can ever replace him. I too would give up all my insights and altruism to have him back in my arms. No hesitation. In a heartbeat.

That is why comments such as I described in this post are so very hurtful. That comment is just a representative example. It demonstrates how we need to look differently at grief, trauma, and how we (the wider ‘we’ – culture and society) work with those who have experienced grief and trauma and work together constructively, collaborating and learning from each other to make a positive impact on the world.

I will leave the final word with this powerful quote from the article:

“[PTG] promises,” he writes, “to radically alter our ideas about trauma— especially the notion that trauma inevitably leads to a damaged and dysfunctional life.”

My philosophy.

My philosophy.

 

A Story That Begins With a Hospital, Ends With a Hospital (oh and there are hospitals in the middle of the story, too)

I was nervous about going to hospital this morning. It had been a long time coming, and many preparations had been put in place. Last night, I got ready my bag and the outfit I was going to wear, to help minimise the stress this morning. So many kind people sent supportive messages and best wishes. This morning I got up bright and early and went off to hospital – just not the one I had planned to go to, or for the reason I was nervous about.

This morning was supposed to have been my first day back at work at a hospital in my neighbouring town. Martin, my other half had been complaining of back pain yesterday, which steadily worsened as the day progressed. Last night the pain worsened to the point where he was in agony, and he could barely move.

The GP was considered but bearing in mind the level of pain and mobility, I thought A&E was best. As it turned out, it was a wise choice because he needed an x-ray (being an NHS Comms person who has worked on Choose Well campaigns, going to the right service for our needs is ingrained!).

Thankfully, while Martin’s condition is very painful and uncomfortable, it is a nerve problem that is not serious. He has strong pain meds, and the option to return to hospital if the pain worsens.

Flowers in Hugo's garden.

Flowers in Hugo’s garden.

There is an irony to our hospital visit this morning. My return to work marks the end of a period of our lives that began with a visit to the same hospital back in February 2014.

I left my desk thinking I would be away from work for a week’s leave. Martin and I had gone for a ‘babymoon’ at a posh hotel. It is there I started to feel unwell one night with the ‘heartburn’ I now know to be symptoms of the preeclampsia and HELLP syndrome.

A few days later, I was sent to the local hospital by my community midwife. We hoped the hospital visit would be brief – perhaps having to return for multiple appointments until the end of my pregnancy.

Not so – I was admitted, and sent to a specialist hospital two days later where our baby son was born 16 weeks prematurely to save both our lives.

Since then, our lives have revolved around hospitals for one reason or another: the five weeks of Hugo’s life; debriefs with my obstetrician; tests to discover if there was a cause for HELLP syndrome; psychotherapy appointments.

This has meant a return to work in a hospital is daunting – not only because the period of time that has elapsed – but also because it is in a hospital (even though it is not one I or Hugo were cared for in). Any hospital has so many triggers: smells, sounds, ambience.

Thankfully on this occasion we were able to return home after a few hours, with none of the drama or action stations related to my own serious illness. I’ll be returning to work tomorrow instead.

As a result of my illness and Hugo’s death things are very much in perspective for us: we understand what our priorities are.

Our visit to A&E this morning underlined what Martin and I already know from the last 15 months: you never know what will happen tomorrow.

Preparing to Face the Fear

What do you do when faced with having to do something you fear?

a) Fear? What’s that? I fear nothing!

b) Run away!

c) Hide and hope it will go away.

d) Face it head on – show it I’m not scared!

e) Do everything you can to best prepare for everything it may present you with.

Really, I suppose your response is going to depend on the situation. For example, I am terrified of spiders so faced with a huge one of those my response would be b. Run away, fast. I’m someone who thinks people who call the emergency services to help them deal with an eight-legged fiend in their home are perfectly reasonable.

Anyway, this is not a post about my arachnophobia. The fear I am facing is returning to work next Tuesday. Saying it’s a fear sounds strange. It’s not like it’s something that makes me jump in terror like seeing a big spider scuttle across the floor.

I have been away from work since early February, 2014. That’s a very long time. In that time, Hugo was born, Hugo lived, Hugo died. I had to recover from my illness. I had to find support to help me deal emotionally with my illness, Hugo’s too-short life, and his death. It took me a very long time to find that support, and in that time I developed coping strategies that helped me survive but that were not conducive to being out in the big, bad world. Those coping strategies involved being in control. Staying at home, usually; it felt safer. Controlling who I saw, spoke to and when.

Finally, the support I needed transpired. Another tough journey, scabs torn off, wounds reopened. But progress made.

An acknowledgement that any progress is good. Self-compassion, self-care. I have to be kind to myself. There is no cure for grief. This is forever.

IMG_20150526_190834

Eventually, finally, I felt as ready as I ever will be to return to work.

And what is there to fear, rationally? It’s only work. It’s not like I’m in the armed forces, in the firing line. I work in a hospital, and not on the front line.

The problem? I will be returning to work with a couple of new companions: grief and anxiety. They can take up lots of energy, needle you with self-doubt, taunt you by sending you in to a spin of a deep, dark, mood.

Frustratingly, they do not understand rational thought. Telling myself there is nothing to fear does not remove the fear.

So, I am focusing on option e. Doing everything I can to prepare.

Being compassionate towards myself for those times when grief or anxiety take over. Making time for self-care so I have more positive energy to help cope with the dark moods. Teaching myself to resist negative energy, to focus on what it is important, to know my own limits.

Remembering that one step, one day at a time is all I need to do.

Remembering that I have dealt with so much worse in the past year. And survived.

Remembering that I work with so many wonderful, kind, compassionate people, many of whom I am proud to call friends.

Remembering that by remembering my self-care and self-compassion tools, I can remain in control of many things.

Remembering that some people will not know what to say, meaning that they may look at me like I am a leper, ignore me, or say the ‘wrong’ thing. That does not make them bad people. I have handled all sorts, I can handle this too.

Remembering that moving forward with my life does not mean moving on from Hugo. Hugo is still with me. In my heart, in my mind, his legacy in everything that I do.

Remembering that this is a landmark moment marking the end of the most beautiful, the most harrowing, the most wonderful, the most heartbreaking, the most eye-opening, the most challenging period of my life.

Remembering that while I wish with every cell in my body Hugo was still with me, I am the stronger for everything that has happened.

Preparations for facing the fear of what is next. But knowing that surely, what is next can never be as bad as what has come before.

 ___________________________________________________________

Word of the Week: Preparation

Prompt word: Fear

The Reading Residence
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What Ifs and Wonders

Do you remember Sliding Doors, that Gwyneth Paltrow film from the 1990s? The film explored what happened to Gwynnie’s character – and her life – as a result of getting on the tube before the doors slid shut, or just missing the tube.

Many of us have moments where we wonder ‘what if…’ for so many things. What if we had said ‘yes’ or ‘no’ to something we hadn’t or had done? What if we had turned left instead of right that day…the possibilities are infinite.

In the vast majority of cases we can’t change what has happened, but that does not stop us wondering.

I have had some huge what if questions since I got ill, including:

– What if I had chosen a midwife appointment on the Thursday afternoon, rather than the Monday (Hugo was born on the Thursday morning)? Would Hugo have lived at all? Would I have died?

– What if my condition had worsened on that Monday night, and Hugo had to be born at my local hospital. I probably would never have met him. The team at the local hospital would have done their best, but they were not specialists. Hugo would have had a long ambulance journey to a specialist hospital without me, with me following as soon as I was well enough. Being at opposite ends of the same hospital was bad enough.

– What if Hugo had died before I had a chance to meet him?

– What if Hugo had died without me being with him?

– What if HELLP syndrome and preeclampsia happened a few weeks later in my pregnancy – would Hugo have survived, being bigger and stronger?

– What if I hadn’t got ill at all, and went on to have a full-term healthy pregnancy? What would my life be like now, with an 11 month old baby? It would be amazing – but I find it difficult to picture.

– What if I didn’t have so many wonderful, supportive people around me?

– What if I didn’t have my blog to pour all my feelings out in, and to give me a purpose after everything that happened?

– What if social media didn’t exist, and all the support that goes with it?

– What if I had got the support I so badly needed sooner?

These are just a small sample of my ‘what ifs’ and wonders. Different outcomes for some of them are terrifying, and do not bear thinking about.

But I am human, and these thoughts come often unbidden. How I respond to them can depend on my mood, the nature of the thought, and the context. I try to not expend too much emotional energy on them.

I try to acknowledge them, waft them away.

I am very unlucky to have got a rare pregnancy complication, and at such an early stage.

I cannot change what happened, I cannot bring Hugo back, no matter how much I wonder what would have happened if only it had happened a few weeks later. Or not at all.

I try to remember that I am lucky to still be here. Physically unscathed.

And I am lucky to have spent 35 precious days with my gorgeous little Hugo. Other women who had the same illness were not so lucky. I have many precious memories no one can ever take away from me.

Hugo

Hugo

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