Yesterday at the end of Baby Loss Awareness Week, there was an international wave of light, where all over the world people light candles at 7pm local time to remember all the babies who have died. I didn’t light a candle. I didn’t light a candle because I was busy, I was looking after other pregnant women and their babies. It’s ironic somehow, but also it is a fitting tribute to Tilly. In amongst the cacophony of the maternity unit, you probably wouldn’t even think about what brought me here, you probably wouldn’t notice, maybe you wouldn’t even know. But that is why I came here, how I arrived here, and how I know that every single baby is precious. That if I look after someone who has lost a baby I know that they are feeling utterly devastated, in a place that they never imagined they would be. And although I can not tell them that I know, I know they will get through. It is part of our job to share with women in the joy, but also to care for women in the darkness. We have an amazing bereavement midwife on our unit, our women are well supported. When we left paediatric intensive without out baby, no professionals supported us, we had to find out own way. I had to tell a midwife and my GP that my baby had died. We are lucky, we have good friends and family, but some people are not so lucky, or they are isolated. We need to support these women and families, let them make memories, let them talk about their babies. Don’t be afraid to say their names. Let’s talk about baby and infant loss. Say their names. Tilly Grace Beaumont.

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So yesterday the NHS turned seventy. The NHS in which, according to the World Wide Web, I was baby number 21,603,528. An NHS which has provided care for my family in friends and in which Darcy was baby number 38,886,277 and Tilly was baby number 42,222,615. Of course Tilly’s story turned out to be very different from Darcy’s ongoing adventure, but the NHS shaped her story and she was provided with excellent care in a state of the art hospital. I am certain that, perhaps even within my generation, she may not have lived as long as she did as knowledge and technology surpasses all expectations, and where medical science continues to advance to the point where we are living longer than ever.

There is an incomprehensible ethical discussion about the limits of medical science which I would not even attempt to enter but one thing I am sure of is that we are so fortunate to have the NHS and health care that is ‘free at the point of access’ and does not discriminate, an NHS staffed by people who are passionate about what we do. Do not take your NHS for granted, do not let it get underhandedly and slyly privatised beneath our noses. Fight for it. I, for certain, will fight for a system that meant we got to spend four weeks with our beautiful girl, and a system in which I have the privilege of welcoming new life into the world.

The NHS. Miracles. Everywhere. Every day.

This day is always hard, but as time goes by I do think that it gets a little easier. I keep busy, make sure I’m not on my own too much and the day passes much like any other. There is truth in the saying that you cannot have a rainbow without rain, and I would say this to anyone else who looses a baby: it will  get easier and you will get through it. You will always find that a little bit of you is tinged with sadness, but you can be happy again, you will laugh and you will find joy in the little things. Sometimes I think you will appreciate the little things even more, appreciate the good times and realise that there is great value in appreciating the everyday joys and triumphs.

Six years seems like a long time and like only yesterday all at once. When I woke up this morning Tilly was not the first thing that came into my mind, nor the fact that today is her sixth birthday. I feel guilty. I feel guilty that even though she is not here I have rebuilt my life, my plan b, and I can still be happy without her. I know that that’s okay though, and I know that that is the best tribute to her. There is no ‘shrine’ in our house, I do not visit the grave often, I do not cry often but it’s there in the normal everyday. When I care for women, I think about how I would have liked my care to be, the communication and the compassion. I appreciate the life we have, even if it’s not the one we had planned.

5 months ago I started a new job, and I have started to tell people I work with about Tilly, the dreaded ‘have you only got the one..?’ question. These are my collegues and friends and working with women and their babies is perhaps where I am most vulnerable, it’s important that they know so that if I am caught off guard, I don’t have to explain myself all over again. Yesterday I was asked ‘how did you get through?’  and I didn’t really know how to answer, but today I think I would say ‘because of people like you, people that aren’t afraid to ask me what happened, people that aren’t afraid to say her name’. Please say her name, because all I need to do is to remember.

 

Lost

But here’s the thing, Tilly was not a miscarriage, she was not still born, she was not even a neonatal death. She was an infant death. These terms are defined. There are charities and support for different types of loss. Yet somehow, when you give birth to an apparently healthy baby who later dies, you get lost.

In the early hours of the 25th of April my husband and I left the hospital without our baby. We had to go home and tell our three and a half year old that her sister had died, that she would not be coming home again. I had to tell a midwife who called to see ‘how things were’ that I was organising a funeral’. I had to attend a postnatal check up on my own and tell the GP that my baby had died. And the week before Tilly’s first birthday, I had the results of her new born blood spot test through the post. Not one health professional got in contact with me. Not one health professional offered any support. Once I left that hospital we were on our own.

Infant Loss

When I look back, I wonder how we got though those early days, weeks and months, but we did. It’s appalling that there is such limited provision to support parents and families after the loss of a baby, and that there is such a difference across regions. I was lucky to have a supportive network and over the months I was able to find coping mechanisms, but I can see how easily it could have been very different. No one family should feel alone and unsupported after losing a child.

I am about to embark on a career that will allow me to support women and families in many ways, including when they lose a baby. I endeavour to do my best so that no women has to explain why she hasn’t got her baby at her postnatal check, to ensure that I do the communicating and that she accesses the right support. Something positive out of something devastating. Knowing that my experience has shaped me but it doesn’t define me, that I live to make both my girls proud.

This is the title of a book written by a woman called Sheryl Sandberg, I’m yet to read it but I’ve read a few interviews recently and she talks of how found her way after the sudden death of her husband. How we can find meaning after tragedy. How we can take our ‘option B’.

So, I guess that’s where I am. I am a few weeks off of completing my degree in midwifery: My option B. Loosing Tilly was what led me here, my ‘option A’ would have been being a mum to my two girls and then returning to the health & fitness industry. Instead I have become passionate about caring for women, babies and their families and giving them the best care I possibly can. This is my ‘option B’ and whilst it may not be what I had originally dreamed of, I don’t afford it any less. In fact, because of my journey to ‘option B’ I give it everything. Option B? My husband, my daughter and Tilly’s legacy, providing compassionate, women centred midwifery care and giving 100% every time.

What an interesting concept…running yourself to better mental health. Exercise has long been known to have benefits on both our mental and physical health and it was inspirational to see the runners on the BBC documentary start their journey towards the London Marathon. I can absolutely advocate for the benefits of running and I think my decision to train for the London Marathon after Tilly’s death was one of the best I could have made for my emotional well being. It gave me focus and purpose at a time when I was lost, I had Darcy and Russ but the direction that I thought my life was going to take  was vastly different from the situation I found myself in.

5 years after Tilly’s death I felt inspired, as I always do, by the London Marathon and I will be entering the ballot next week when it opens. As I prepare to enter a new chapter in my life as a qualified midwife I will use running as a release as I begin to work independently, becoming a midwife in my own right. I always joke that I don’t really ‘do’ stress and I am sure that having an outlet like running is what helps me keep stress in check. I am under no disillusion that the first 6 months of been qualified will test me in many ways, and I hope that running will give me the head space I need, just as it helped my with my grief.

Sometimes I need comfort and acknowledgement, sometimes i need focus and purpose. Always I need to remember, sometimes it can feel as if I am alone in remembering Tilly. Never be afraid to say her name…no matter how much time has passed. And if you’re not sure what to say, you can always come running with me!

There’s nothing like the combination of Tilly’s birthday, Mothers day, a week on transitional care and Comic Relief to get you thinking.

Five years ago we had just got home with Tilly and little did we know about what the next few weeks would bring. This week, I spent her birthday looking after other women and their babies. Was it hard? Yes. Did I think about her? All day. Does the pain get less? No. You see, the pain doesn’t get less, it doesn’t go anywhere you just learn to deal with it. You learn to focus on other things, and for me that is my family and becoming the best midwife I can be. When I think about how far I’ve come over the past five years, I feel proud. I’m proud that I’ve managed to take tragedy and turn it into something positive, proud that I’ve learn you can come back from the most devastating of losses and proud that I’ve shown Darcy that whatever happens, we’ll be okay.

Mother’s day approaches, and I think about Tilly a little more than usual but I concentrate on being with Darcy because I can still make a difference to her life and I never want her to live in the shadow of what has happened to us. Tilly is part of our family, we remember her and we talk about her, but Darcy is the here, the now and the future.

And then there’s Comic Relief, and I think about the women and their babies who die because there is no access to the basics. Children that die of diseases that are easily preventable. Places where there is no safeguarding, no rape crisis, no trained midwives, no obstetric team at the end of an emergency call bell. And it makes me sad all over again. We take so much for granted. Sometimes, even when life gets really shitty, we should remember how lucky we are.

 

 

 

 

So, this week has been a week where I’ve given a lot of thought to the subject of baby loss. As I get stuck into my dissertation I find myself surrounded by evidence that, actually, we still are not consistently providing women with the care they need after they loose a baby. Whether the baby dies before birth, during labour, or after delivery women are often left floundering through the coming weeks and months with very little support.

Once I left hospital for the final time. With Russ. Without my baby. Not a single health care professional came to see us. No one phoned. Well, no one phoned except the midwife who called to see “how are things?”. So I told her. Like I told the GP at my postnatal check up. Like I shouldn’t have had to tell anyone involved in our care. I told them: my baby died. And, until you have to say those words, you will never know quite how they stick in your throat and make you eyes sting. How they break your heart every single time.

So, this week, in amongst the piles of evidence, the systematic reviews and the guidelines, even before I have critiqued literature and drawn conclusions I have confirmed why I am doing what I am doing. If I can ensure that no body who I care for has to explain why her baby is not with her, or why she doesn’t want to have her baby weighed on day 5, then I am making a difference. Saving her those three little words can make all the difference.

So, here we are again. Christmas number 4, minus 1. It’s hard at this time of year, knowing that someone is missing, the irony of delivering other people’s babies whilst still missing my own with unrelenting heartbreak. But I don’t talk about it. Nobody ever asks about it. Christmas with only one little girl, when there should be two is heartbreaking.

I focus on the good stuff, watching Darcy have fun, the build up and the excitement. This year we will be spending Christmas with my family, which means Darcy will be in the company of other kids. Pretty sure that my brother and his wife don’t quite know how much of a difference this will make to us. This will make a big difference, to see Darcy with other children at Christmas and to have that as a distraction as to what might have been is invaluable.

But don’t be mistaken. I will think of her. For the whole day, and every day there after. we miss you Tilly Grace.