10 years

I’ve just looked back and haven’t written for so long, but it has been a strange couple of years to say the very least. Last week was Tilly’s birthday and she would have been ten, and all at once it seems so long ago and like it was just yesterday with some memories so clear and some just like a hazy dream. It is almost impossible to explain how it feels, but I can say that even now not a day goes by when I don’t think of her or when my heart doesn’t break just a little.

You shouldn’t think that I am sad all the time, or that we live under a black cloud, but just know that we are living our lives differently than we thought we would. We are happy and we have each other but we should have been a team of four. We lay flowers, we talk about her and we remember, but as time goes by less and less others remember and that is hard because it’s as if she didn’t exist. And I don’t blame anyone for that, I can’t remember birthdays or anniversaries so I don’t expect people to remember her birthday. But even if you don’t remember her birthday or the day she died, if you think of her don’t be afraid to mention her, say her name. She is part of my story.

#BLAW2020

As we pause to reflect at the end of baby loss awareness week, I wonder about how we talk about our babies in the years after they have passed away?

You see, when people pass away in old age, we talk about the memories, the ‘remember when…’ moments but when a baby dies, what memories do we have? Do we remember the moment when a doctor told you they were sorry, but there is no heart beat? or the moment when you are told that you baby is too young to survive? For me, maybe it would be the moment when you ask “so, how many times can you extubate her…?” only to be asked when your husband will never be with you?

I remember that moment, and I remember that my sister in law (also my best friend of many years) was sat with me and that we knew, in that moment that whatever the answer to the question was. It wasn’t what I wanted to hear.

So, what do you remember? How do you pull something positive out of memories that are built of bad news, tears, grim faces bearing the worst news, the bleeping of machines?

I can’t give you an answer, but I know that some positive can come out of the worst of times. There may not be happy memories, but I know that it is possible to be happy again and that to live happily, despite having visited the deepest grief imaginable. And it is okay to be happy. It comes slowly, and in the earliest days with guilt. Gradually, the good days begin to outweigh the bad and you find that, although there aren’t years of happy memories to share, you can talk about your baby as a part of your family. The child, brother, sister or grandchild.

your baby’s memories will always be tinged with sadness, but they always be part of you. Don’t be afraid to say their names and live a life that would make them proud.

Stranger Things

I don’t think I have ever know such a strange day to have Tilly’s birthday on. Today is also Mother’s Day. It is also the second day of all leisure facilities being shut down due to the unprecedented situation that has seen COVID-19 spread across the globe, and the type of government action we’ve not seen since the war.

I have read many posts, blogs and watched vlogs and reports talking about the massive impact this is going to have. But here’s the thing. It hasn’t really hit us here in the UK yet, we are just at the tip of the iceberg. However, I can promise you that those of us working in the NHS can already see services being adjusted to allow for the increase in demand that we are expecting. Routine services are being scaled down, appointments and operations being cancelled, face to face contact is being reduced. It feels like we are waiting for the storm to hit. And we are.

Others are working around the clock to support the nation, food production and retail, care workers, teachers, those working in infrastructure and utilites. The people you don’t even normally give a second thought too. They are going out, doing our best, putting ourselves and our families at risk to take care of you, to make sure you get what you need, to look after your children so you can take care of others.

So today think twice about going to see your mum for lunch, or taking her out. Pop a card and flowers at the door. That’s it. I can tell you that eight years ago I thought everything would be fine. It wasn’t. You might think you will be fine. You may not. Or someone in your family. Your friend. They may not. I could not control what happened to me, I couldn’t make a difference. You can. Follow the guidance.

This Mother’s day, look after your Mum. Social distancing matters.

Say their names.

So as the international wave of light works it’s way around the globe, year on year increasing awareness of baby loss I still reflect on how little we talk about it. Tonight a very old friend sent me a photo of the candles she had lit with her own two children, the youngest who is just a few months younger than Tilly. This friend is one of the only people I know who is not afraid to say Tilly’s name, who knows that it is better to risk tears than say nothing at all. And in the photos there is a picture of her youngest, in tears. Tears because he had just been reminded of why they light the candle. And so I wonder, when will we adopt the honesty and emotional openness of a child, not afraid to show how we feel, not afraid to risk tears. Less brave face. More brave conversations. Be brave, say their names.

7 Year Itch?

In relationships we talk about the ‘7 year itch’, but in my relationship with grief it’s less of an itch and more a feeling of contentment and reconciling my situation. That’s not to say that I don’t feel that loss any longer, just that I am reconciled to my plan B. Don’t ever think for one moment that I don’t wish everyday that we could have Tilly with us, but do know that it is possible to be happy and to feel positive when living with the loss of a child.  All around me I see people doing amazing things to honour the memory of their babies, raising thousands of pounds to support the charities that supported them, setting up charities where there have been none previously, awarding excellence in the field of baby loss, working to improve services within our NHS to support bereaved parents, and (of course) taking a complete career turn around and being inspired to help others.

Take this away when you read this, and support the families, individuals and midwives who are working tirelessly to support the women and families who, in that moment, feel like life will never get better again. It will, and I have been lucky enough to meet many of those women, and I am lucky enough to be one of those women.

We are a family, who 7 years ago welcomed a baby girl into our family and four weeks later we had to say goodbye. But we are a family who have grown through that grief. D is able to talk about her sister in a positive way and knows that, despite not being with us, she is part of our family. My husbands daughter can talk to D about her and they know that they have sisters in each other, despite the big age gap (there are no ‘halves’ in our family. R and I have muddled through the process together and come out the other side. With the support of family and friends, and now new work colleagues we can continue to grow as a family who thrive in adversity and are not defined by it.

When it rains, look for rainbows.

Happy 7th birthday, Tilly Grace.

Wave of Light

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.

Happy Birthday!

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.

As time goes by…

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.

Happy Birthday

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.

 

Baby loss awareness week

This blog entry was published today by the lovely Julz Scott On her blog Melody and Me, as part of a series on infant loss. Much is written On stillbirth but less seems to be in the open about those babies that die a few short weeks after they are born, babies like Tilly Grace.

On the 22 of March 2012 I gave birth to a beautiful baby girl, Tilly Grace. She lived for 30 days. 5 of those were spent at home with us and the rest in Hospital. She spent most of her short life on a ventilator in paediatric intensive care, where she died on the 24 of April after her ventilator was withdrawn. Tilly had early infantile epileptic encephalopathy and her outlook was very poor, she was unable to maintain her own ventilation and was heavily medicated for seizures, with limited brain activity.

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 25^th 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.