It wouldn't feel right to start this without saying that I feel like I lost my voice a little, over the last few years. My last blog post was in 2018 and at that time, taking a pause was the right thing to do. However I have come to realise the fluidity to life and what choices I make available to myself.

A post I shared on my facebook last year came up on my timehop today. It was written by Elisha Palmer on her blog below:

Elisha's post has stayed with me all this time as she writes about the impact of grief 2.5 years after the death of her son and what she calls her 'season' of grief. Re-reading Elisha's words has struck a chord as I suddenly recognise my own season of grief. Where I am today is almost identical to where I was this time last year.

It goes something like this; a few posts may come up in July which rewind me to 2016 when I was happily pregnant with Holly. I experience such a longing to be that person again, someone not tainted by loss and with a belief that bad things won't happen to me.

Following this, I am then just waiting for August 5th to come which is the date that we found out Holly was poorly. During this wait, anxiety and paranoia kicks in and I topple between being okay and heart break. I become distant as I stick to where I feel safe and I remove myself from potential triggers in a bid to put myself first. Anxiety rockets as I wonder how I come across to others during this time, hoping that I am tolerable and I second guess almost every single decision that I make.

Following the 5th comes a blur of dates involving scans in London and remembering how little time I spent with  Eleni, who was only 17 months old at the time. A saving grace is that we have Kobe's birthday in August which helps to add some light to it all. My own birthday has its own difficulties as I remember going for a walk around Virginia Water with my sister and her family when Holly was still alive. I don't remember my actual birthday but I do remember the Virginia Water occassion which was a light relief at the time, although I now struggle with  knowing that Holly was to die only a week later.

In the mix of balancing all these memories, is then the workings that goes into how to celebrate Holly on her birthday. The last three years had felt like an immense pressure to actively 'do' something in her name. I have laid this pressure down now although Covid-19 has brought its own challenges with us not being able to visit the hospital, as we usually would do.

I want to highlight with this post that it has taken me 4 years to recognise this season (as obvious as it may seem) but also the less obvious side effetcs of being in this current space. Even with therapy and the best support network in the world, I can still end up floored by anxiety and simply by the reality of the situation. I want to also highlight that this is okay. I have to actively remind myself to be gentle to myself during the season because it is okay that this is hard.

I have many grief dips throughout the year (albeit less challenging than in the early days) but recognising my season is fundamental in supporting myself throughout this time. If you are reading this then please don't carry guilt for your feelings and actions during your season. Sometimes putting one foot in front of the other is all that you can do and given the circumstances, I think that is pretty bloody incredible.

X

My little heart, 

I felt like writing you a letter today. There is so much that I want to say and yet my fingers can't work out what to type first. I want to talk about why grief after three years matters, why grief after every year matters.

Certain dates are burnt into my memory, the 1st of September 2016 being one of them. 3 years ago, I attempted having a normal day. Our local town was holding a festival and so we headed down there. I lasted about 10 minutes before I had run back to the car in tears and come home.

The day before we were given the news that your heart was too damaged and too weak to survive pregnancy. We spent hours walking around the grounds of the cardiac hospital figuring out how we were suppose to know what to do next. We went back into the hospital and asked to see the consultant again. The prognosis hadn't changed but I think somehow we just needed to hear those same words. 

We came home and I quite literally collapsed into bed. The next thing I remember is us attempting to go to this festival the next day,  but it all felt too suffocating. How could I possibly be walking around with my very obvious pregnancy bump, receiving those kind "how wonderful you're expecting" eyes, whilst knowing what fate lay before us? It was just impossible.

Three years ago began another chapter in our 'book of losing you', which means that I now enter the hardest part of the year. I imagine it may be the hardest part of every year for the rest of my life. A week filled with pain, exhaustion, guilt, sadness and heaviness for needing you alive and in my arms. 

I remember the assumptions that I had on grief, before we lost you. I had heard how the sayings go... 'grief gets easier with time' and 'time heals all wounds'. That is what they say, isn't it? Could these sayings really have stemmed from a healed broken heart? I'll give you a quick break down on why I think these idea's on grief are so very wrong. 

2017 - Your first birthday. It is your FIRST birthday! Grief is raw but it is totally allowed to be raw. There is a bittersweet feeling of excitement in seeing your name written in cards, to planning how we celebrate your birthday but then, to the agonising realisation that this is in fact, your final first. 

2018 - Your second birthday. Shit. Everyone thinks I should be over this by now. Will people still remember that you even had a birthday? What do I do this year to ensure you're not forgotten? I'll throw a birthday party. Cue being absorbed in planning the most perfect mermaid themed party which allows little time for sadness to take over. But should I still be feeling so wrapped up in my grief? Society is conflicting and it is so confusing.

Now - Your third birthday is approaching. I don't feel like doing a party this year but it is no longer your 'first' either. I don't worry about you being forgotten anymore because we all know that I will never let that happen. Instead I am now left with that sinking feeling of, 'it has been three years that I have lived without you.' Its the realisation that three years of missing you is as a painful as one year of missing you. Because the missing you is still going and more memories are being lost. Time hasn't healed my longing, my wound is still open. My grief grows because it runs parallel to my love for you. 

I dispute the fact that grief becomes more gentle over time. It doesn't become more gentle, less sore, or more bearable. Instead, it molds and finds other ways to affect us. It clings on, lets go, pounces and hides, all at the same time.  It is ever changing. 

Your third year isn't like your first but the entwined love and grief is there all the same. I don't expect it any other way, for the trauma of losing a child can't become unreal and it can't become undone. The trauma of  losing you and leaving you, is forever a part of me.

As much as I try to educate others on baby loss and grief, it is life long learning for me too. Grief doesn't need to be put into boxes and broken into stages. By doing so, it creates an expectation from not only the outside world but also onto the baby loss community too. Others who have lost may agree that grief softens over time and that is okay, but such powerful statements (whilst of course meant with good intentions) might not deliver the desired intention.

I am coming to realise even more how fluid grief is and how important it is to not expect where it takes you. I am learning that no one can really have any expectations on how I grieve because they have as little control over it as I do. I am accepting that three years on, there is no sense in saying that it 'still hurts' because its of course it still hurts and I respect that part of me will always hurt. 

I didn't realise that three years would hurt more than two. There is so much left unspoken about grief. There is so much which needs to be said. 

Three years baby girl, three years. And it ​STILL blows my mind. 

xxx

I remember feeling anxious about dying from a young age. I use to perform 'rituals' in my mind, every evening before I would feel safe enough to fall asleep. This could take anything up to half an hour to complete but back then, it was so important for me to do it. 

I got older and whilst those obsessive rituals stopped, I would still feel so anxious about death. I realised that this 'death anxiety' was actually kind of normal, as other people would tell me that they felt this anxiety too. I felt some relief in knowing that it wasn't just me and so I pushed 'death' to the back of my mind. 

Pushing death to the back of my mind was the problem though because then, when confronted with Holly dying, I didn't know how to deal with it. My paranoia worsened and suddenly everything and anything could lead to myself or other people being taken away too. 

I get that no one wants to talk about death. I get that. But when you enter the education system and go throughout many years of learning without really learning about life skills and how to cope with the inevitable, well, I think something is fundamentally wrong there.  That is why it is so important for me, for my earth babies to grow up knowing all about Holly. No one can escape the fear of death but they will grow up understanding it, in a held and safe space because how can you deal with death as an adult when no one wants to talk about it as a child?

When you are touched so closely by the death of a loved one, you go on to see the world through a different lens. The trauma of navigating death in the darkness leaves you paranoid with heightened senses. Minor health issues are now terminal illnesses. A poorly baby is now a poorly baby who might also be snatched away from you by death. A bereaved parent sees every illness and every hazard as death, trying its hardest to stretch his fingers and grasp your baby into his own. 

I write this post just a week after my son ended up in hospital. He was poorly and I followed my instinct to get a second opinion. On the outside, maybe I looked paranoid, a helicopter parent or the worrier. Before death touched me, I too remember watching my eldest daughter get ill and whilst I was concerned, I knew she would always get better. Why? Because death happened to other people, not me. 

Only now death has happened to me and I am not sure that you can ever truly get back from that. 

So whilst I reflect back on a horrible week full of gut wrenching anxiety, I ask you 'the outsider', to be patient and try to understand. That thing called 'death' is real for me and sometimes it can be a little bit too much to bare.  

I have come to realise that the taboo within babies dying is much bigger than I ever anticipated. It isn't just talking or sharing pictures of our children and it isn't just opening up about terminations. The taboo also lies within how we grow up as a society. The taboo is keeping things 'cuddly, behind closed doors and out of sight, out of mind.' There is still so much to be done. 

That thing called 'death'. I talk about it.

Why?

Because it matters. 
​

It seems that at the end of every year since losing Holly, I feel the need to write a blog post. I guess it's part reflection and part making sense in my head, that I am entering yet another year without Holly. The entering another year part doesn't really get any easier. I am not sure that the longing to have her here will ever really ease, but the part on reflecting on the year, has for me, shown that love always wins. 

You see, in the early days of grief there is no light. The days go on until little by little, more light comes in, like rolling up a blind in tiny amounts until you can see enough to get up and eventually do the things that need doing. Some days that blind may slip down again but eventually, I find myself experienced enough to find my way in the dark and lift it back up. 

That is what I have learnt this year. By allowing light in, I've allowed myself to make decisions for the future, which doesn't mean leaving Holly behind but instead taking her forward with me. 

If it wasn't for Holly I wouldn't be in a new job. A job where I am so much happier than where I was before. A job where I am not filled with anxiety but rather a place where I feel at peace. I have made wonderful new friends and if it wasn't for letting the light in and braving on change then I would never have realised this. 

I lifted the blind and allowed myself to go back to learning. Embarking on a counselling course has been beyond invaluable to me. In fact, I really encourage anyone to give it a go. I have learnt more about myself in 4 months than I probably have in 28 years.  What with combining the counselling with the midwifery skills, I know that Holly has lead me onto a path that really means something for me. Lifting the blind has shown me what path I needed to follow and I am so excited to keep on walking it.

Of course, 2018 hasn't all been light and cheery. At the front of my mind there is always my grief. Some days that takes over, but that's okay. Some days I may lay in the dark until I feel ready to face the world and that is okay too. I am learning to go with it and to be who I need to be during those moments.  No rush.

I am surrounded by so many people who support me and by so many bereaved parents of whom I am learning from each and every day. I have learnt that I don't have to pick between being strong and broken. The words of other bereaved parents supports me in my own understanding of my grief. I am both broken and strong and I will own that, proudly, for the rest of my life.

2018 taught me that it was okay to take my time, to be where I am today. No excuses given for when the blind falls. No feelings of having to accept things that I am not happy with. I am past excuses because, well, life is too short to not be true to yourself. Grief is here forever because love is here forever and so because of that, I will always aim for love. Some people will walk this path with me and some might not. That is okay too, because feeling anger towards that will only ever affect negatively on me and so if you cant walk this path with me, then I wish you well. 

2018 has been kind. I am standing and I am doing. I have plans and my heart is forever full of love. I am living my best possible life without Holly here and for that I am proud. 

Happy New Year to all my friends, family, friends with their babies safe in their hearts and all those babies dancing in the stars. A new year isn't easy but they've still got us and we've still got them. Keep lifting that blind but always at your own pace, always. 
​

Ever since Nicola (aka Pea) shared the news that she had written a book on baby loss, I couldn't wait to read it. Having followed Pea (@onedayofwinter) for sometime on social media, I had grown fond of her often thought provoking posts and the ways in how she chose to honour her son Winter, who sadly passed away at one day old. 

I was incredibly lucky to have received a copy of Pea's book 'Life After Baby Loss' last week and I am delighted to share my review, only moments after  finishing the final chapter! 

Pea titles the book as 'Life After Baby Loss - A Companion And Guide For Parents' but even after reading the title, I hadn't realised just how fundamentally important this book would be for bereaved parents. It would be easy to assume that any baby loss book is a personal account of the authors own baby loss experience and whilst Pea does share some experiences, this book is an incredibly selfless act of supporting others. This book is truly aimed to give guidance to others, when faced with baby loss. 

The book is thoughtfully split into chapters which aims to support the bereaved parents through the early days of grief, understanding emotions such as anger and jealously, ways in how to still celebrate annual occasions and right through to the emotional turmoil of embarking on and having a rainbow baby.  I love that the book has been divided in such a way, as it means that any parent can easily dip in and out of it, depending on where they are in their own personal grief journey. 

One of the things that struck me right away, is that Pea hasn't excluded any form of loss in her book. Whether the parents loss be through miscarriage, still birth or neonatal death, Pea invites them all to accept their grief as valid, in such a sensitive way. As Pea puts it so honestly, "suffering is suffering, pain is pain, a loss is a loss." Having experienced two miscarriages myself and understanding the silence and darkness which surrounded those losses, I felt such warmth at having those losses recognised. I know that the recognition of all losses and the acknowledgement of all parents as being parents, will mean so much to so many. 

In another form of 'including everyone', from the outset, Pea invites the reader to trade the phrase "baby loss" for another, if the reader feels uncomfortable with the wording. Again, this is such consideration and respect for other parents grief. Immediately this brings a feeling of acceptance as the reader understands that it is okay to chose their own words. Pea understands that every bereaved parents grieves differently.   

I have learnt so much from reading this book and in particular, understanding loss from another perspective. I have a deeper understanding of how to deal with my own feelings of anger and guilt, as Pea has been able to show the reality of how these emotions serve little good. Her wise words have also made me feel less bitter towards people who may not understand my personal grief. Having being presented with this alternative perspective, I actually feel emotionally lighter in my own grief. I don't think it is easy to see grief or emotions such as jealousy from a another perspective and in the 2 years since losing Holly, this is the first time I have ever looked at it from another way. What Pea has taught me has actually been monumental in my understanding of my emotions, and I truly feel that her words could help alleviate so many others of the weight of some of their feelings. 

Pea has written with so much honesty and integrity but yet has not once taken the spot light away from you, the reader. This book is about you, your grief, supporting you and that objective is not once lost through the pages. I commend Pea for doing this as I for one know how easy it would be to share only a personal experience of loss. Pea makes it clear that the person who matters in this is you, and are her loving stories of Winter serve as a beautiful way to support the notion that 'you are not alone.'

'Life After Baby Loss' is an incredible act of selfless love which needs to be available to all bereaved parents. It is honest, genuine and so full of love. It is the most important book on my bookcase and so many could benefit from reading its words, bereaved parent or not. It has the power to open up the minds of those not touched by baby loss but who wish to support others, and help hold up the hearts of those who have unfortunately embarked on their own baby loss journey.

It is packed full of words of support, ideas to continue honouring your baby, tips to help communicating with those who do not understand your grief, ways to understand and challenge damaging emotions and above all, the understanding that love powers all. 

It is beautifully illustrated by @selftherapist and her honest drawings compliment the delicate and sensitive nature of the book. Beautifully illustrated and beautifully written.

Winter, thank you for teaching your mummy so much and Pea, thank you for writing and sharing his wise words. 


​Life After Baby Loss  - A Companion and Guide For Parents by Nicola Gaskin, is available to purchase here:

I wanted to do a little blog post on how we chose to celebrate Holly's 2nd Birthday. As with anything I blog about, I share because I hope that some where it may help others. Whether that be by giving bereaved parents ideas of ways that can celebrate anniversaries, giving family or friends ideas in how they can support the bereaved or even by just helping to increase someones understanding of baby death. There is by no means a 'right way' when it comes to celebrating these anniversaries. Some parents may not want to celebrate at all and that is okay. This is just the way we did it and the way we think Holly would love. 

We decided that this year we would throw Holly a birthday party, joint with her baby brother. It felt right considering that their birthdays are only 13 days apart and that Kobe was Holly's gift to us. So a week before her actual birthday we threw a rainbow themed party for Kobe and a mermaid themed party for Holly. Holly was born in her sac, which is called a mermaids purse and so that is where the mermaid link originally comes from. We had a little mermaid cake topper made for her and decorated her cake with sea shells. 

We had friends and family coming and knew that we wanted to do something special for her. At her funeral we released balloons but what with trying to be more environmentally aware, we decided to try and find an Eco friendly alternative. I had an idea of doing something with the sea and came across a beautiful biodegradable urn. We  decided to use our 'wish' paper that we used at our wedding (again it felt right as Holly was with us when we got married in Cornwall) and to ask friends and family to write down a birthday wish for Holly. We will then seal the container and throw the urn into the sea when we next return to Cornwall with the idea being that the wishes will find our little mermaid. 

​We then completed Holly's table at the party with flowers from her Pops (including Sea Holly flowers, of course), a number 2 balloon, her candle and her cake. We sang her 'Happy Birthday' and we wrote her wishes. It was a beautiful day for a beautiful little girl. 

The 7th September was Holly's birthday and the beginning of the day started off much like her first birthday. We had more donations to drop off at Frimley Park Hospital (Holly's birthplace). This year I had worked with some wonderful ladies, 'Emily Makes Boutique' and 'When You Wish Upon A Star' to create a beautiful candle to give to bereaved parents. We had been given our 'Soft Blanket' Yankee candle on the day Holly was born and I just love having a smell associated with her and so we wanted to try and give other parents that gift too. 

I am so proud of the candles that we created and donated in Holly's memory. I could never thank the midwives at Frimley Hospital enough for their care and support during our diagnosis and after care of Holly. We can't shower Holly with gifts as she isn't here, so instead we chose to spread some love and kindness in her name. 

​We then went and visited the chapel at the hospital. On the day Holly was born, we were given the option to enter some words on to the remembrance book which is held there. We didn't hand that paper in until last year and so this year was the first time that we had seen her entry in the book. Seeing Holly's name written is something which always feels so special. 

Our daughter Eleni had asked to have a picnic at Holly's (the crematorium) on her birthday and so that was what we did next. We took down flowers which we had made from the florist who had created her funeral flowers, again with Sea Holly and took down her some balloons too. Eleni had picked cup cakes for us to have and we sang 'Happy Birthday' whilst watching the wind play with the flames. We opened her cards and read them to her. We played games and we laughed. It was emotional and yet so beautiful too.

As part of Eleni's sibling box from the beautiful 'Otis and Friends', she sprinkled angel glitter over Holly's flowers. This will definetly be a new tradition to Holly's birthday. 

We did decide on getting Holly one very special birthday present and that was a new memory box. We were so thankful to be given a 4louis memory box when Holly was born but we felt it was time to get a personalised one just for her. The idea was easier said than done as we spent MANY hours trawling the internet to find what we wanted. We didn't want a wooden one as was worried that it could come with a strong smell that would mask the smell that was only just still remaining on her blanket and hat. Luckily a lovely friend pointed me in the direction of 'The Empty Box' company and I couldn't be more thankful. Empty Box were incredibly welcoming with the ideas that I had and worked with such kindness to create the perfect box for Holly. They created the exact dividers that we wanted and the outcome is just beautiful. We gave out sweet pea seeds at Holly's funeral and so we decided to go for a sweet pea design for its special meaning. We now have a perfect home for Holly's special things. 

Another friend suggested last year that I got a 'Holly bracelet' with the idea of adding a new charm to it on special occasions. For her second birthday I added her birthstone. 

​We were so lucky that Holly was remembered by so many caring people. She got some beautiful presents, cards, birthday wishes and words of love. It is possible that on a day as difficult as a birthday, for there to still be so much love and light. 

As I said in the beginning, our way of getting through the hardest of days wont be how everyone does but I hope that in sharing, it might make someone see such occasions differently in the future. It might make one more person wish bereaved parents a happy birthday for their child or it might just make someone have a little more understanding of the consideration needed on those days. 

Whereever these words go, I hope they can bring a little comfort and the knowledge that someone, somewhere does understand. If my daughter has taught me anything, its that selfless goes a very long way. 

Happy Birthday my sweet angel. Your dancing feet will move mountains. 

I have been feeling a little lost the last few weeks. Or maybe it has been months, I am not so sure. When you are in the midst of a grief dip, it can feel all too consuming like the current emotions have been flooring you for what feels like an eternity. I assumed it was all because of the time of year, Holly's upcoming birthday and the memories of what we were going through, this time 2 years ago. Just thinking about it all sometimes just feels too much to bear. 

Last year (in the run up to Holly's first birthday), I was heavily pregnant with Kobe. I had an easy way to distract myself and although we did celebrate Holly's birthday in some wonderful ways, it didn't feel half as hard as it is feeling this year.

I always assumed that grief just 'got easier over time' and whilst the initial trauma does feel less raw as time goes on, I don't really feel that any of it gets any easier. If anything, grief is a constant roller coaster where most days you are just creeping slowly up the ramp until you inevitably reach the top and then plummet to the ground. Some 'okay' days will then follow and some completely happy days too but the cranking of the wrench to take you back up, is never far off. 

It dawned on me the other day that maybe the second birthday is the hardest anniversary. During the first year following Holly's death, everything was a first. First Christmas without her, first family holiday and first birthday to name a few. Understandably all those firsts were horrible and heart wrenching but there was a certain (I don't know if this word is ever acceptable when talking about baby loss but here goes..) novelty to it too. I don't mean that my baby dying was a novelty but more like when having a real breathing baby and the novelty that comes with celebrating their firsts. It is new and exciting for parents to experience these firsts with them and I chose to celebrate Holly's firsts because it is how my grief manifests, in celebrating in her memory. The thing is though, with a real breathing baby, the novelty of these moments continue each year because your baby grows and you learn how they like to celebrate. When your baby is dead, that doesn't happen. 

Instead you are left with a sinking and terrifying feeling that your baby will be left behind. I don't know how Holly would like to celebrate her birthday so how do I know what I am suppose to do and how am I suppose to know what to do for EVERY year after? Holly hasn't just died anymore so does that mean that people stop thinking about her so much? 

It doesn't matter how many times people tell me that 'she will never be forgotten', because all I can think is 'but would she be forgotten if I just didn't share her as much as I do?' Would she really be remembered as much as I wish she could be?

It would break my heart if Eleni or Kobe were forgotten but I know they would never be because they can scream, shout and cry. They have a voice.  It would break my heart if Holly was forgotten but she doesn't have a voice which is why I make mine heard.

Only, I feel that making a voice is harder as time goes on. 

The firsts are not firsts anymore. They are seconds which will roll quickly into thirds and forths and so on. Holly wont be here for her second birthday or 32nd birthday. She will never be here but my heartache will be. 

The constant battle of keeping her memory alive will be here for everyday I am living and that is a heavy heart to carry. I would use up all my birthday wishes to wish that every baby is always remembered and for every bereaved parent to know that. I would use up all my birthday wishes to just let Holly have one of her own. 

Second birthdays suck. 

In February I was honoured to have been asked to speak the student midwives at the York Baby Loss Conference. A video recording was made of my presentation which is available for you to watch below, as is my presentation in writing.

​Kirsty

Hello. My name is Kirsty and before I really begin, I just want to thank you for taking the time to be here today, baby loss is a subject that is very close to my heart. I am going to start off by sharing a little of my background and how I ultimately became part of the baby loss community.

In 2012 I completed my training and found myself in my first qualified midwifery job in Surrey.   It was incredibly nerve wracking but exciting as it was something I had worked so hard for. I felt competent enough to work on what I had learnt during my training and felt I would be able to support families through the amazing time of childbirth.
​
However, I quickly realised that a massive part to my training had been neglected. Baby loss, bereavement and death were all words that I had rarely heard during my training and were all subjects in which I had very little experience. I knew of the subject of stillbirth but I wasn’t familiar with it. We’d had just a single lecture on stillbirth during university and during my training I had been sheltered from caring for the parents of babies who had died.  

But it seemed that my lack of experience didn’t matter. As between the years of 2012 and 2016, I looked after many families who had lost their babies. I always tried my best; I learnt as I went and used my own assumptions of loss to help navigate what I did in those situations. But did I know that I was doing? No. Did I feel competent with what I needed to do? No. Do I wish I had done things differently? Yes.

In 2016, I found out the hard way what bereavement care really needed.

So flashback to August 2016. My husband and I were expecting our second child. My daughter, Eleni, had been born the year before after an uneventful pregnancy and labour. She was healthy and so we had no reason to worry with our second child. Everything seemed to be ticking along just fine.

We went ahead to our 20 week scan, excited to see our baby again and find out what we were having. I lay down for my scan and remember thinking how it seemed to take awhile but I wasn’t worried. And then the sonographer said ‘We have seen an abnormality with your baby’s heart, it looks bigger than we would expect and the heart rate is a little slower.’

I was worried. But I still didn’t really think something was horrendously wrong because bad things never actually happen to you, do they? So we were taken into another room where the midwife made us an emergency appointment at the Evelina heart hospital in London, for 2 days time. She told us not to worry but they couldn’t give us any indication as to what was wrong; all we could do was wait to see the specialist.

We went home and straight away I got out my Doppler and listened to my babies heart beat.

That will never get any easier to listen to. Now I was terrified. My little girl’s heart was beating at roughly 60bpm. I don’t remember much more of that weekend.

Monday came and we went to London. Denial or hope was in full force. I didn’t want to believe that anything could be seriously wrong but this time I lay down for my scan, I gripped my husband’s hand and watched my consultants face, trying to analyse every sharp inhale.

After an hour scan in silence we were taken into another room to be told that our baby daughter had complete heart block, a condition where the electrical signal between the ventricles and atriums don’t work. Blood was flowing in to my baby’s heart at one rate and leaving at another, which is why her heart rate sat at 60bpm. It was also suspected that she had pulmonary stenosis and a hole in the heart. Being only 20 weeks, delivering our baby wasn’t an option. Termination was offered but we decided to go on and see what the next scans would tell us, as we didn’t feel like we had enough information. There was a chance that she would deteriorate but there was also an 80% chance that she may continue at the level she was at. The goal back then was to get to 33 weeks and deliver via c section.

Over the next four weeks my stomach grew whilst we had scans weekly, some positive and some less so. It was discovered during this time that I carry Anti-ro and Anti-la antibodies. Horrid little antibodies that were continuously attacking our baby’s heart, causing the complete heart block and slowly killing her.  These antibodies are only picked up if specifically tested for or if the mum is already known to have Lupus or as was found with me, Sjogrens syndrome.  As the odds of having these antibodies and affecting a baby are 1 in 20,000 it made the suspected outcome for our baby incredibly hard as consultants typically see this once every 10 years and so what results they did have was limited.

At just over 24 weeks we were delivered the news that our baby’s heart had started to slow further. We spoke to 4 difference consultants who all said that our baby was not going to survive pregnancy. My antibodies had caused irreversible destruction to her heart as the muscle was breaking down. She was dying.

We decided to take on a life time of pain by interrupting the pregnancy to avoid her dying a slow and lonely death. I didn’t want her to pass away without me being aware. It was the only thing that I could do for her, to give her a peaceful death and be mentally there with her.  At just under 25 weeks I had a medical termination which allowed for my daughter to pass away peacefully whilst all she would hear was the sound of my heartbeat and feel the warmth of my love.

2 days later, on the 7th September 2016, after a 23 minute labour, my daughter Holly was born still. My heart exploded with love and broke with grief as my world forever changed. We had 24 hours in hospital with Holly, before saying our goodbyes. During that time, we made memories, we cried and we told Holly how much we loved her.

And then began the rest of my life, my forever after Holly, learning how to live without my daughter. So I threw myself into planning her funeral, I started blogging, I began raising money, I started sharing pictures of Holly, talking about death, speaking at conferences and breaking the silence surrounding stillbirth.

I share openly and honestly because things will never change it we skirt over the subject of death because it makes us feel uncomfortable. I promise you that however uncomfortable the subject of death makes you feel, it is 10 times worse for the parent who has to live with it stamped into their lives.  Things will never change if we keep sugar coating death as a baby born sleeping in a bid to make it sound less traumatic and things will never change if we don’t speak up and stand up for stillbirth to given as important a priority as any other birth.

So that is why I am here, because Holly’s life and death hasn’t ended. She has shown me how important it is to get bereavement care right. We as bereaved parents only have one chance of making memories with our babies but we as midwives have that chance to assist in giving the best experience possible.

So what have I learnt about bereavement care? I wish it was possible to tell you in a single presentation, what care we should be giving. But the reality of that is impossible, as every parent, every baby and every grief is unique. So instead what I think we should do, is be aware of ALL the opportunities that are out there so that we can give the parents as many options as possible when supporting their grief.

It’s the small things that can make such a difference when you are going through something so traumatic.  It’s being met as soon as you walk through that labour ward door by the bereavement midwife and whisked into your room so that you don’t have to bypass any ladies in labour.  It’s having a midwife support you through labour because he or she understands that it is still a labour. I was offered a birthing ball and classical music and I am so grateful for that. I didn’t have to focus on my own silence and pain. In amongst the mess of our baby dying, I was still able to experience a beautiful labour and be able to keep positive memories from it.

Holly was delivered just like any other baby. My husband cut her cord and Holly was immediately brought up on my chest. Tabitha, our wonderful midwife then went to call the hospital medical photographer to come and take some photos. We were lucky enough to deliver at a hospital that offered the services of their own photographer. Tabitha understood the importance of recognising how quickly a baby changes once born. Now I have the most beautiful pictures of Holly and exactly how I remember her, before she had started to deteriorate.  

I also hadn't realised how quickly Holly would become so fragile. In hindsight I wish I had cuddled her for much longer than I had. After our first few initial cuddles and asides from when the both the medical photographer and the charity photographer came, we didn't hold Holly again as it was clear how delicate she was becoming. I think any parent would tell you how they wish they could have just one more cuddle with their baby. So encourage the physical contact early on, whilst the parents are still able.

Holly was cared for just as any live baby would have been. We had scales brought into the room and so we were able to weigh Holly ourselves and take photographs. I am sure most of you have seen precious memory boxes that are given out to parents when they have lost their baby. They are boxes filled with all sort of things to help you make the most of your time with your baby and be able to go home with some special memories. When I have been at work, looking after couples who have lost babies I too have given these boxes out and almost worked through every item to help assist the parents care for their baby. But what I hadn’t ever done was think about what else I could offer. When dealing with something so hard, it’s often difficult to take a step back and think of others things that we can do to help these parents. Whilst we did do all the things inside the box, they also went out of their way to do so much more. Our midwife cut up a nappy to make it small enough to fit our Holly. It was a gesture that was so incredibly thoughtful and exactly what I wanted as who would want to get there baby dressed without a nappy?

The memory box included a little box in which to put a small cutting of your baby’s hair. Holly had very tiny black hairs covering her head but instead of our midwife assuming that we wouldn’t be able to get some or assuming that the cut of hair was only for older babies, she took ages with us, delicately fluffing up Holly’s hair with so much care and eventually cutting a few locks for us to keep. We will always have that piece of DNA with us forever.

It’s having the midwife know the paperwork inside out so that she or he is not flustering in front of you or unsure whether your baby is entitled to a funeral or hospital cremation. Its having the midwives know what you need to do to register the birth and death of your baby instead of sitting there trying to understand how you need to arrange that as well as grieve for your child.

It’s having a midwife assure you that your baby will be looked after once you’ve left hospital. Leaving Holly will always be the hardest thing I have ever had to do. But my midwife told me where she would be at all times, I was given numbers on whom to call and I was reassured from the bottom of her heart that Holly would be looked after well, just as if she was still living. If I hadn’t known where Holly was, it would have made leaving her so much harder.

It’s being aware of wonderful organisations of who can bring more ways to make memories. My sister had arranged for the charity Remember my Baby to come and take photographs of Holly, all free of charge and they are some of my most precious pieces of Holly.

It’s not letting your own assumptions cloud would options are given to the parents. For example, as a midwife we had routinely always given medication to prevent lactating. I delivered Holly at a different hospital to where I worked but immediately asked for the medication as that’s what I had known and thought what you did. But in hindsight I really wish I hadn’t let my milk dry up and actually gone on to keep some and have it made into jewellery or something similar. I would have loved to have kept something else physical from Holly’s pregnancy. So what you expect or currently know as a midwife isn’t always what the parents want so be open to other ideas.

A massively important thing to remember and it sounds obvious but don’t forget the dads. I think sometimes when we already feel nervous, awkward, unsure or unprepared for a situation such as stillbirth, it can be hard to focus on what else is going on, other than what is physically happening to the mother. Again for example, we had Holly blessed which was my husband request as I am not religious. But the Father barely acknowledge my husband, he spoke to me which was great but I felt awkward and sad for my husband, it felt as if he mattered less? And I am sure it’s something which is never intentionally done but it is something which is just so important to not be neglected.

Our midwife understood that there are no rules when you have lost a baby. You quite simply do as much or as little as you like but knowing what are opportunities are there for you to do. She was completely lead by us but absolutely knew what she was doing. On a day which was in most aspects was the worst day of my life, she managed to still bring some love and light in to the world.

 The most important part of all of this was that Holly NEVER left our side. The hospital provided cold cots which meant that everything was done with us watching and with our consent. If able, Let the parents be involved in every aspect of their baby’s care, if that is what they wish. There is no reason why they should miss out on making these memories.  Leave any assumptions you have and ask the parents if they want to dress their baby, have skin to skin cut their baby’s cord, do the handprints and footprints themselves. It’s being given all the opportunities which can mean so much for these parents.

I wish (in the kindest way) that I had experienced more as a student midwife. To have the opportunity to watch and listen to the couple and understand what your gut instinct is telling you they need. I truly believe that looking after bereaved parents requires an additional set of midwifery skills to looking after a live labour and I hope that in sharing Holly’s story I have given you some ideas as to how you can help when you are the midwife in that situation. It is an incredibly special job to be able to share a parent’s grief and hold their most precious memories in your hand which is why I feel the need for compulsory support and training once qualified.  Just give them the time that they need, the trust in that you will look after them and the knowledge that they need to get through this time. There is no right or wrong answer in how they chose to spend their time with their baby as there is no right or wrong way to grieve.

So I want to share just a few of my own bereavement experiences as a midwife obviously before having Holly.

 Shortly after I qualified as a midwife in 2012, I was given the task of looking after my first couple who were losing their baby at 19 weeks. I did feel unprepared. Looking after this couple about to lose their baby, I wasn’t sure how to speak to them, I wasn’t sure what they wanted from me or how I should act. I wish I knew then, what I do now.

When you lose a baby, your world falls apart. You don’t have much positivity left inside you but going in to deliver your baby, you are still so in love and wanting to meet your child. Tabitha spoke about Holly like she still meant something and understood how in a time of despair, you can still be excited to meet your baby. I think back to the couple I looked after  when I first qualified, if anything I think I probably mentioned the baby as little as possible, I didn’t know what to say and was probably worried to upset them more. The reality of this is that nothing is going to upset you more and for most all they want is to parent their baby in the short time that they have.  Your baby is constantly on your mind and so someone else mentioning them, isn’t going to hurt you more. If anything it makes you feel comfort and relief in hearing your baby spoke with so much respect. Take the lead from them, if they want to talk then talk, if they don’t then don’t. Both are absolutely okay and both are absolutely normal.

But I couldn’t see this at the time.

When the baby I was looking after delivered, the parents didn’t want to see her. So I took the baby into the little side room and did the footprints and handprints but felt like a failure. I hadn’t pushed the couple into seeing their baby and I made sure they knew the opportunity was there. But I felt like a failure as I imagined if it was me going through it, I would want to see my baby so maybe I hadn’t supported them enough or done my job properly to make them change their mind.

My own assumptions had clouded that actually this was perfectly right for this couple. They came back the following day and met their baby. They just needed time and time simply can’t be forced when you have gone through something so traumatic. I hadn’t failed, I had done the best I could with the knowledge I had but I hadn’t taken in to consideration that everyone is different. There are no rules when you lose a baby and you can’t assume what is normal as losing a baby is so very abnormal.  Let the parent’s guide you with the care that they need but do talk about their baby, let them know it’s okay how they are feeling, listen to what they need and take photographs as one day these parents may decided they do want to meet their child.

A few years later, I had a shift on labour ward which has stayed with me. I was looking after a low risk labourer and a lady labouring her 15 week still born baby. I was flitting between two rooms, being excited and happy to being quiet and respectful. It haunts me to this day that I couldn’t have been with both of them when they delivered. I was with the live birth when the other lady delivered her dead baby. She must have been terrified. I had tried to tell my shift leader that I wasn’t able to look after the both of them but we were short staffed and I was left without a choice. I was forced to prioritise the needs of the ‘low risk labour’ over the needs of the stillbirth but now I understand that what that means is that the parents who had a live birth, went home with a good experience and many more memories to make whilst the other parents probably started their grief and the rest of their lives in a more painful way than it should have been. Life matters but so does death.  In addition, there was no support given to me, a midwife whose emotions were being conflicted. I was then given another labouring stillbirth to look after that day and come home time I was absolutely depressed and beaten. In fact, I requested to move to the postnatal ward after that. So look after each other and offer support if you know your colleague is having a difficult day.

I don’t have the answers for when the shifts are short staffed and you find yourselves in these situations but I want to shout that it’s not acceptable.  It’s frustrating because these shifts just shouldn’t happen and it’s devastating that far too often, the stillbirths are the lesser priority. I feel that there is a massive ignorance to the impact that a poor service of support during stillbirth can have. It’s almost as if bereaved parents matter less because our babies are already dead. It needs to be turned on its head and acknowledged that we need the support because our baby is dead and what you can do is make yourself as knowledgeable as possible and experience as much as you can now.

During midwifery training it can be very difficult to get the opportunity to look after bereaved parents. When these loses do sadly come about, often students are sheltered from par taking in the care or they are busy needing to fulfil other parts to their portfolio, which of course are important to. While of course you can’t ask for more bereaved couples to walk through the door and neither would you want to, I do feel that there is still so much that can be done to help you feel more prepared in that situation. Since losing Holly the need for more training and awareness for current capability really has become apparent. What strikes me is that when going for midwifery job interviews, there are no questions asked on how capable you are of looking after these couples going through loss. There is no discussion on what previous experience you’ve had and that terrifies me. It simply shouldn’t be assumed nor should it be ignored. The experience of losing your baby as a parent is so precious that I believe exposure and training to be absolutely necessary.  I think it is so important that if as student you haven’t been exposed to pregnancy losses then this needs to be addressed and further training made compulsory once qualified. I feel this training has to involve multiple organisations as you are experiencing today and for these sessions to be made just as important as other days in your mandatory training. I truly feel that looking after a grieving couple is more than the precious skills it takes to be a midwife. It is being a midwife who can counsel people through the first days of grief by knowing what to say. It’s being a midwife who understands the needs of someone who has lost a part of themselves. It’s being a midwife who has gained as much insight into baby loss to allow them to support those parents as much as what’s needed. As a parent to a baby who isn’t here, I really have seen this from both sides. I have felt completely out of my depth looking after these couples but now I understand how important it is to get the time with these parents right.

I think everyone worries about saying the wrong thing to grieving parents, we’ve grown up in a society where death just isn’t spoken about. But what I want to say is don’t worry and over think what to say. Just talk to us and listen to what we need. What is key is having knowledge of opportunities that are available to the parents in their area to assist in their memory making. They might want to do them all or they might not want to do any. And that is okay. By you immersing yourself in the topic of baby loss you are already doing your best. 

So what next? I was very lucky to fall pregnant about 3 months after Holly died. We had a very difficult pregnancy as my baby had a 1 in 5 chance of developing heart block as Holly did and we didn’t get the all clear until 28 weeks into my pregnancy. But Holly gave us a beautiful gift and that is her brother, my rainbow Kobe, who was born in August last year. He doesn’t take away the pain of losing Holly, what he does is just make a little portion of my grief a little lighter. His arrival brought about a new chapter to my grief as I see how much Eleni loves her brother and would love to have her sister here too.

So whilst juggling grief, a newborn and a toddler I have left midwifery and am now focusing on my babies and supporting others with bereavement care when I can. Its bittersweet that Holly’s death has brought me here but wonderful that her life and death has so much meaning and her journey certainly hasn’t yet ended.

Thank you.