Time of death

Tilly was born at 0056 on Saturday 26 May 2018. I’m sure you know that already. But I knew because they announce it, and they write it on the board. It also stops the giant clock on the wall. It is unambiguous.

But the time of death is different. Less clear cut.

They don’t actually tell you that, at the time. You find out later.

When Charlotte went into labour, we knew what the likely outcome would be. And when they started the section, with dozens of trained professionals in the room, we also knew that we were unlikely to spend much time with our child.

In fact, shortly after she was born, the fantastic and utterly empathetic neonatal consultant came over to tell me, as considerately as he could, that he would give our daughter comfort care so she could spend some time with us.

We knew what that meant.

They did that, and after a few, agonisingly long minutes, they brought our living, breathing daughter over for Charlotte and I to cradle.

We knew what this was. We knew we didn’t have long. But this was the most important few minutes of my life. At that point, we saw her chest moving up and down, and Charlotte got to feel her precious breath on her face.

This was borrowed time. She wasn’t going to stay with us, and she couldn’t stay breathing.

So at some point – perhaps when I was escorted out of the room, so they could clean up Charlotte and transfer her to the suite for parents like us – she stopped breathing; disappearing as quickly as she arrived.

But that didn’t stop us spending time with her. Nor did it stop us embracing her, loving her; longing for her.

Eventually we were told that she passed at 0130, meaning we got 34 precious minutes with Tilly. Not much longer than an episode of a soap, but every bit as much of an emotional roller coaster.

One I wouldn’t change for anything.

This blog was particularly hard to write, and hard for Charlotte and I to talk about – but I also knew it was one I had to write. It was the part of the journey that will always haunt me.

Carrying on

On Saturday it’ll be ten weeks since Tilly’s short time with us. I will have completed my second week at work, and will continue to carry on. Whatever that means.

As you all know, I was daunted about returning to work. I am pleased to say that my worries were short lived, as my colleagues quickly made me feel welcome, through their care and consideration, and by giving me some proper work to undertake.

So far, no one has said anything upsetting, and very few people has asked probing questions. Most people have avoided items on the ‘tick-list of things not to say to a grieving parent’. So in that sense all is good.

When people ask how I am doing, I have a few stock answers: “I’m not bad, thank you” or “We’re getting there,” or “it is good to be back and good to have routine”.

These are all true, but they’re all essentially a way of saying, “I’m carrying on”. If I am honest, that would be the best, most succinct, most honest, yet most raw answer.

I don’t feel the same as I did before Tilly was born. I am a different person. A version of me; mostly the same, but not quite. Like a good cover-version of a song you love, or the reformed line-up of your favourite band.

Like most men, I don’t cry much. I’ve not cried at work. I’ve been teary when close colleagues have embraced me, but that’s as much a reaction to their love and kindness. I think the reason I don’t is quite simple – when I cry I feel sad, and I’d rather not feel sad.

So I know that Tilly is always with me, and I think about her countless times, every single day. But I think of her in more of an abstract way, as I attempt to carry on. It just feels easier that way.

However, every now and then I start to feel guilty about this – should I not be trying to carry on? Should I show my emotions more? Should I mention her more at work? Should I go on the work night out tomorrow or is that inappropriate?

These are the thoughts that hound me. And in that sense, I can’t win. Am I even carrying on?

I think so, and I think, probably, I’m doing OK.

And OK is good enough, right now.

It’s the little things

Charlotte and I have just had a relaxing break in Cornwall. Now we’ve returned, my thoughts have turned to my return to work.

At the moment this feels a little daunting, but I know that this nervousness will subside.

It’s the little things that are worrying me about my return. Things like:

When I last left my desk, I was going on holiday before the ‘gender reveal’ scan. Christ, how things have changed since that point. I almost feel sick at my naive excitement and enthusiasm for this.

The building I work in has offices for a number of different teams and departments. Whilst those I am closest to know exactly what I have been through, some, inevitably won’t. I am already dreading the first ‘how are you, I haven’t seen you for a while’ conversation.

On that note, what do I say to people? I could give answers ranging from a sentence or two, to a two-side summary of our experiences. I have no idea how much detail I will want to give.

Should I have a picture of Tilly on my desk? My gut feeling is that yes, I do want one – and after all, other fathers have pictures of their children. But will that upset me, especially when people ask about her?

In the grand scheme of things, these are all small considerations, but right now, they are what occupies my mind when I think about going back to work. That’s before I even think about what work I need to pick up, what on earth is waiting for me in my emails, and remembering where the coffee machine is and what my code for the photocopier might be.

However, when I do get to that point, I know I will have Tilly’s memory with me, and I know that will help me get through the tough times.

#NHS70 – it’s all about care

Tomorrow marks the seventieth anniversary of the foundation of the National Health Service. This is a significant anniversary and one which is rightly getting lots of media coverage.
With this anniversary looming large, I thought it was an appropriate time to write a blog about my recent experiences. There will be countless people writing about the politics and policies of the NHS, and they will know far more than me; so I’ll avoid the pitfalls of straying into this territory.
As regular readers of this blog will know, my partner Charlotte and I recently lost our daughter Tilly. She was born at 25 weeks +1 and was sadly too little to survive. 
Our experiences of the NHS started like most other expectant families, but from 20 weeks onwards, things were anything other than normal. From this point, we experienced the care of three different NHS trusts in three different counties – Cumbria, Tyne and Wear and Lancashire. 
Despite the change in circumstances, and the different trusts, one thing was consistent across them all – care. 
It’s a big word, and it means lots of things to different people, but at almost every point in our journey, it was this that stuck in our minds.
For me it ranges from the little things like the midwife trawling to try and find me some cheap accommodation when Charlotte was transferred to Newcastle, to the almost-parental support we received from the midwives after Tilly was born.
It’s things like the staff making sure I had a lunch or dinner when I was on the ward, or that every single night, the midwives’ handover and introduction to Charlotte took place a long time after their shift had finished.
Or the midwife who hunted us down to give Charlotte a much needed hug when her waters broke, to the one who accompanied Charlotte in the ambulance, so that she wasn’t on her own (incidentally, she finished work late and 50 miles from where she started her working day).
And things like providing us with rooms away from the delivery suites and newly born babies, where we had time for Charlotte to start recovering, us to start grieving, and to be kept in a constant supply of cups of coffee.
Midwives constantly went above and beyond our expectations, doing everything they could to make our experience less painful than it might be. They did this because they cared.
Our experience of the doctors and consultants was also as positive. I think back fondly to the consultant who squeezed us in for an appointment in trying circumstances, who showed so much compassion that I nearly broke down in tears at his empathy. Our consultant – a European expert, no less – was blunt, frank and honest in his communications with us, but despite this, managed to combine these traits with compassion. And care.
At nearly every point in our sad journey, we felt like we were treated like humans, like individuals, like far more than a number or name on a list.
And in our, ultimately, tragic circumstances, this is what we needed more than anything. 
Whilst I don’t want this to be a political point, this care, was all offered to us by the world’s largest publicly funded health care service – one which is founded on the principle that good quality health care should be available to all, free at the point of delivery and from cradle to grave. In my mind, it’s hard to argue against that.
So, this blog post is my small, and somewhat clumsy attempt at recognising the great work of the almost 1.5 million people who make up the NHS. Thank you. Thank you for caring. 

Knowing what to say

Since we found out about the pregnancy problems we faced, the support we have received has been brilliant. This ranges from the kind thoughts of friends to the care of the NHS.

Following Tilly’s departure, we’ve also been pointed in the direction of organisations that support parents in our circumstances, such as Sands (the still birth and neonatal death charity).

I’ve read a lot of leaflets and other information from Sands, and it’s all been useful. It’s ranged from the practical (securing birth and death certificates and arranging a cremation service) to the emotional.

However, it can feel overwhelming trying to take this information in, not least as it comes so quickly after a traumatic and emotionally draining event. However, one piece of information struck a chord and has stuck with me throughout. That is, to not take offence by the things that people say.

It’s a small point, but it’s invaluable. It’s invaluable because you quickly realise that people don’t know what to say. You know this for two reasons – one, because they often tell you and two, because nor do you.

But the very fact that people point this out shows you that they care.

If people do say something that doesn’t feel quite right; that hits a raw nerve, you know that they’re unlikely to be doing it deliberately. In my case, I tend to be thankful that they’ve reached out.

And ultimately, unless they’re downplaying the situation Charlotte and I have been through, it’s unlikely to offend us.

A month on from the death of my daughter, what I can say is that you do want your friends to get in touch, you don’t mind if they don’t know exactly what to say, and you certainly don’t mind if they ask how you are.

This is because talking definitely does help. It helps me cope with the grief, it helps me understand how I am feeling and coping, and most importantly, it ensures that Tilly continues to be remembered.

But as for an answer to the ‘how are you feeling’ question – I’ll get back to you when I work that one out.

My reading for Tilly

Tilly’s funeral on Friday was a success – if that’s the right word. To be honest, it’s hard to know what to say, and it’s hard to find the right word or phrase. ‘Went well’ doesn’t seem quite right, ‘nice’ and ‘happy’ don’t reflect the sadness of the event and ‘ok’ is too lacking in emotion.

The service was hard but felt heartfelt. This was followed by an afternoon tea in Ennerdale, which saw people smiling and chatting, despite the circumstances.

I gave a reading at the service, and I wanted to share a copy of the words I wrote for my daughter. I hope you like them.

Tilly


Today we say goodbye.


We only held you for a matter of minutes, but it took only a fraction of those to feel a love all-encompassing, a love unequivocal, and a love as strong as you.


Your mummy and I know just how lucky we were to have you in our lives, even though this time was so short.


We know now, that we will take you with us, wherever we go and wherever life takes us. And we know that this will keep us strong, as you watch over us in the days, weeks and years to come.


Right now, we’re so very sad – the sky is a little darker and our lives are a little less full.


We all know that if babies survived on love alone, then you would have made it to a ripe old age. But sadly that is not how the world works. I wish I wasn’t standing here now, reading these words, without you by our sides.


Instead, we will use the memories we have of our time with you; of feeling your breath on our cheeks, of holding your tiny, perfect hands in ours, of your rosy red lips and of your hands and arm resting against your face as they were in the womb.


We’ll take these memories of your beauty and your strength and we’ll cling to these to help us reach the end of every single day.


And we know that, over time, these memories will make the days appear that little bit brighter again.


While you might not be with us in person on these occasions, we know you will always be there in spirit.


So today, we must say goodbye.


TIlly. We always loved you, and we always will.


Goodbye.


Love from Mummy and Daddy.

Happy Father’s Day

Today is Father’s Day.

I won’t lie, beyond buying a card and arranging a gift for my dad, I didn’t think about it at all. However, I woke to a couple of messages from friends and family wishing me a happy day or telling me they were thinking of me.

It was only at this point that I realised I, of course, am a new member of that club. The realisation that I am a member, but will never be able to share it with my daughter was a sobering one.

The best part of our short time with Tilly was being able to cradle her close to us, showing her just how much we loved her. We were lucky enough to have the time to take some pictures, to give us a record of this period.

One of these images, along with a personalised card, was Charlotte’s choice of Father’s Day gift for me. I don’t think I’m overstating it to say that this was the best present I could have received, and it will take pride of place at my bedside.

We’ll never forget Tilly, and we’ll use moments and occasions like today to give our own tributes. I feel sure that doing this will help us get through anniversaries and poignant occasions a little more easily.

It’s been a teary start to the day, but a happy one.

Happy Father’s Day to my own dad, Billy. I know that he’s felt our pain over the last few weeks, yet has stayed strong. I appreciate this more than he might realise.

Nothing but love.

The day(s) we say goodbye

Today is my daughter’s funeral.

That’s a sentence you never want to write.

Of all my experiences in life so far, saying goodbye to me daughter, has to be the worst. In fact, I really, genuinely hope that I don’t have to go through another thing as difficult and painful as this.

And the worst thing is, we’ve already done it once.

We were lucky (another choice term), when Tilly left us, because she was able to stay with us, in our hospital suite, for a couple of days, whilst Charlotte recovered from her surgery.

However, once this had happened, and we were preparing to leave, a dark cloud appeared. It grew with every minute as we got nearer to being discharged, knowing that she couldn’t leave the hospital with us.

As the moment neared, Charlotte and I both got choked up, and tried to busy ourselves with the mundane, before going back to spend precious moments with Tilly.

We were eventually given an option – to leave the suite, and Tilly, or to have Tilly taken from us. We chose the latter of the two – it literally felt like the better of two evils not to leave her in the room on her own.

With that, we left.

And having done that, and having slowly got over it, we go again.

I have no idea how the ceremony will go. All I can say is that I plan carry Tilly into the service, and I also plan to say a few words about just how beautiful, strong, amazing and perfect our daughter was.

I can’t say whether I will be able to do either of these.

But for Tilly, I will try my best.

Time to kill

When we arrived at Newcastle, Charlotte was admitted to ward 34, in the Leazes maternity wing. This is a dedicated ward for people with pre-natal maternity challenges.

This is a fantastic place full of friendly staff, who are trying to help women through a whole manner of different pre-birth challenges. They do this with kindness, understanding and compassion.

The nature of the ward means that fathers are allowed to be there a lot of the time – barring a two hour slot at lunchtime, so the pregnant women can get some rest.

For a week, I had the challenge of finding something to do between 12pm and 2pm, when the ward was closed off. The choice of staying in the hospital and having another Costa, wasn’t always appealing.

For the first couple of days, I would wander the city, and as the weather was glorious, it almost felt pleasant. Until I remembered why we were there.

As our visit wasn’t entirely planned, I was also able to pick up some new clothes for Charlotte and I, to get us through our time away. During this time I’d tend to stop for a coffee and lunch, and possibly even a glass of wine.

After two days, I realised this wasn’t going to be something I should continue – both from a financial point of view and for the benefit of my own health!

Instead, I joined a gym! More about that, and the two visits I managed before things changed, in a future blog.

Hospital signage

You’ll find that some of my new blog posts are serious, and some are more light-hearted. They won’t be chronological, and they might well appear random. But what they represent are some of the thoughts and observations that struck me during the month.

When Charlotte’s waters broke, we knew it wasn’t great news. She was only 24 weeks’ pregnant, and we knew that our baby, our Tilly, would be unlikely to survive such an early labour.

Our local hospital, the West Cumberland in Whitehaven, quickly and sensibly transferred us to the Royal Victoria Infirmary in Newcastle, where our consultant is based. This is where we spent the best-part (best couldn’t be a less suitable word) of the next two weeks.

There are a few things worth knowing about the RVI:

1) It’s a very good hospital, and it has a specialist fetal/foetal medicine department, which is one of the best in the country

2) It’s a very large hospital with a dedicated maternity wing. This ward is quite some distance from both the main entrance and the multi-storey car park – i.e. anywhere I’d ever be coming from!

As a result of 2), my step count each day we were in the hospital tended to be impressive. I became a dab hand at knowing the quirks of the hospital and its navigation. These include things like wings only being connected on certain levels, needing to find a hidden staircase, and others.

Walking these routes meant I also had lots of time to take note of the signage. As you’d expect in a busy hospital – it needs to be clear and unambiguous. By and large they achieve this through consistent design, typefaces and colours (blue for the Leazes/maternity wing, black on yellow for the eye hospital, and so on).

I say by and large, because I spent quite a considerable amount of time pondering why the typeface on the signage is almost always Arial/Helvetica or similar, barring a few signs near to A and E which use the London Underground font.

On a similar note, the spelling of fetal occasionally had an added o.

As I say, walking the hospital each day gave me a lot of time to think!