Walk With You Campaign

In the month of August, we will be launching our Walk With You campaign. For many parents our peer support is a lifeline in the darkest of days, and we have seen a 60% increase between 2021 and 2022 in our monthly referrals, so your help is desperately needed to ensure we can provide this support to ALL bereaved parents who reach out.

Please donate to the appeal here – https://www.justgiving.com/campaign/wewillwalkwithyou

This is Elaine’s story:

Matthew Phillips ‘Grieving for someone is the ultimate act of love, and it is certainly not an act that we can choose to skip by’. ‘Saying Goodbye’ by Zoe Clark-Coats Here I was sitting, holding my baby boy in my arms. He was so tiny yet so beautiful and looked just like his big sister. My heart was breaking so hard and I was crying the hottest tears thinking this is not the way it’s supposed to be. It was only two days ago I had been listening to his heartbeat, discussing my birthing plan with my midwife and dreaming about the moment my child would be born and I’d get to hold him for the first time. Never in my life did I think that I would ever have to walk out of a labour ward with empty arms. When I left my son behind, a part of my heart died; I walked out of that hospital never to return home as the same woman I was before.

We didn’t find out that I was pregnant until a bit later into pregnancy. We had a bit of a rollercoaster start however we were all beyond ecstatic to learn that we were expecting and that our baby was growing well. For years, even before our first-born, Annabel, we had unexplained fertility issues and early miscarriages, so this was a very much wanted and gifted pregnancy. Being pregnant in lockdown felt so much longer than it did with my daughter. With not much else to do I spent most of my time bonding with my bump, enjoying his kicks and making preparations to welcome our baby home. It was a nice focus and was a lovely bonding experience for our family. As we progressed through pregnancy he was growing bigger and his movements were getting much stronger. I remember constantly thinking how lucky I was to experience life growing inside me and how amazing your body is to be able to do that. I’m not the best of sleepers but I didn’t mind being awake as my wee guy kept me company. I would enjoy his wriggles and kicks. I had his whole personality sussed out, just like the way I had with his sister. I was spot on with Annabel and with Matthew I knew that he was cheeky and he was going to keep me on my toes.

We were attending one of our weekly scans, I had just started to relax and enjoy my pregnancy. I had always been told off by my midwife and consultant for being paranoid. I just couldn’t help it. I knew what was at stake. We had been having a laugh with our sonographer – we were laughing at the length of his legs and were discussing how wonderful it was that we were having a boy. Our daughter said we were having a boy and she was right. It wasn’t long into our scan that our sonographer noticed that something wasn’t quite right. It was then we were given the news that I was 2-3 cm dilatated and that we needed to act fast if there was any chance to save our pregnancy. I just knew by the look in her eyes that it wasn’t good and our worst nightmare started to unfold. So, there I was within the blink of an eye, undergoing an emergency operation to prevent premature labour in the hope that it would save his life. The operation was our only hope of prolonging our pregnancy – just a few more weeks so that there was a better chance of survival. They talk about fight or flight mode and now I have true understanding of what that really means. My maternal instincts kicked in and I have no idea how I kept it together. With every decision and action I took I did it with such focus and clarity – I was fighting to save my child’s life. I remember lying in the hospital bed, praying so hard that the operation would work as I rubbed my bump telling him that I was going to do whatever it took to save him.

It felt manic in the operating room, there were lots of people moving around and it was overwhelming. I remember a nurse holding my hand and explaining that they all had a job to do. Still, I was able to keep focused and understood everything. It wasn’t long into the operation before my world came crashing down and I’ll never forget the moment my consultant leaned over the curtain. She took my hand, and I could tell by the way she looked at me. She had tears in her eyes and I’ll always remember her words “I’m so, so sorry…”. Her words and the look in her eyes are etched in my brain and it haunts me in my sleep. I will never ever forget it. All I remember is staring at the ceiling. It felt like a lifetime before my body went into complete and utter shock. My body did things I never knew that it could do – I was struggling to breathe, my vision was blurred, and I felt a strong burning sensation through my entire body. My waters had broken and there was nothing else we could do to prolong our pregnancy. He was too little and he wouldn’t be able to survive for long without water. I don’t remember much after, but I do remember hospital staff shouting at me repeatedly asking me if I was ok. Due to covid my husband wasn’t allowed in the operating room. I’ll never forget the moment when I first saw him afterwards, I was trying to catch my breath and I kept crying telling him that I was so sorry that I couldn’t save our baby. Not long after we were taken to the labour ward where they explained that at my stage in pregnancy there was very little chance of survival and that I need to prepare to deliver my baby. I begged them not to make me birth my baby – I pleaded within an inch of my life. I don’t know what I was thinking – of course I had to deliver my baby, but I just couldn’t comprehend it. How can something be this cruel. I was left in the labour ward on my own for a short while. He was still kicking away and I held my bump so tight. I had tears streaming down my face and unaware of his fate, I told him for one last time how much I love him and how sorry I was that I couldn’t save him. I told him that his big sister loves him so much. It was the one last act of love on behalf of my daughter and I don’t know how I managed it, but I sang him the nursery song ‘Once I Caught A Fish Alive’ just like the way she used to sing to my bump most nights. I used to sing that lullaby to Annabel when she was a baby so I thought it was sweet that she would sing the same song to my bump. I knew he could hear because he would always wriggle much more when she would to sing to him.

Our midwife was beyond amazing and if it hadn’t been her that weekend I’m not sure I would have had the strength to get through labour. When I laboured with our first, I was calm and collected and not once did I make a sound. But when I had Matthew, I was wailing in complete and utter heartache. I can’t describe the noise I made; it was some sort of primal noise that animals make when their young are taken away from them. I knew I was in pain from the contractions, but I didn’t feel any of it as it didn’t compare to the pain that I was feeling in my heart. I remember thinking that I’m his mother and there was nothing I can do to save him, his fate was out of our hands. We’re supposed to protect our children and the pain of this was too much and never have I felt so helpless. Our midwife helped us through the most traumatic experience I’ve ever encountered. This is a part of midwifery we don’t know of. To be able to do such a job and to do it with such care and compassion, takes a very special person. These are the people I truly admire, those that make a difference when it really matters. It wasn’t until two days later before I gave birth to Matthew. He was born sleeping. There is nothing more painful than having to give birth to nothing but silence. No cries, silence. As heart-breaking as it was, when our midwife handed me our son it’s a moment that I’ll forever cherish. He was tiny and so beautiful. Our midwife congratulated us for making such a beautiful little human. Now looking back, her acknowledging our child the way she did is a gift that we will be forever grateful for. We got to hold him. I didn’t want it to end but I knew the time would come when we would have to hand him over and say goodbye.

We were given a SiMBA memory box that we could use to create memories. This was a lifeline for us, especially since time had been cut so short. The box contained knitted blankets and teddies amongst some other wonderful keepsakes. We kept a teddy for Annabel and the other is with Matthew. We also got to take some hand and footprints – something else I’ll always cherish. I held him and sang ‘Once I Caught a Fish Alive’ for one last time while I touched and counted each of his ten little fingers. I knew it was time to say goodbye, but I didn’t have the strength to hand Matthew to our midwife. I just couldn’t. How could I? So I handed him to my husband and watched him give our son to the midwife for the last time. There are no words to describe the pain as I watched her leave the room with our son. We were provided with information about a post-mortem and were handed a leaflet that detailed the different types of examinations that could be undertaken. I couldn’t take anymore and my brain just shut down – I have no idea how long I was asleep for.

Doing that walk out of a labour ward, hearing other babies being born and leaving your son behind is like starring in your own worst nightmare. A nightmare on steroids. I’ve been through it and it still somehow doesn’t seem real. It’s horrific. I hope that in time, maternity services will advance so that mothers can birth their babies in a separate area should they wish to. I used to think going home with a new-born was one of the hardest things anyone could do – you don’t have a clue and you had no idea what you were getting yourself into. There is no instruction manual to help you navigate parenthood. But nothing will ever prepare you for walking out of a labour ward to return home to your family without your baby. Going through the pain of labour, one that resembled my first, only to receive further pain doesn’t make sense.

Matthew’s funeral took place on Wednesday 21st April 2021. The day he was born, the day of his funeral and his due date were three of the sunniest days we had that year. It’s funny the things you notice. I’ll never forget that feeling the morning of Matthew’s funeral. I woke up and I knew that I had to face the unimaginable, something that no parent should have to do. I’ll never forget the pain in my husband’s eyes when I watched him carry our sons’ tiny blue casket into the crematorium. I was holding his lion teddy, a gift from a friend when we had passed the three months. I held it tight and cried realising that he’ll never get to play with his teddy. Annabel now has his teddy; she sleeps with it every night and keeps it safe. I never knew how much I needed to have a funeral for Matthew until we were at his funeral. I remember our priest saying the loveliest words – recognition for Matthew’s little life and how he has a soul just like each and every one of us. His life matters, just like everyone else’s regardless of whether he had lived outside the womb or not. Our priest’s acknowledgement of his life is another gift I will forever cherish.

The weeks after having Matthew were all a bit of a blur. I have no idea how I survived those days. I would go to sleep crying and I would wake up crying. My body was so cruel and my mind would trick me into thinking I felt his kicks – just for me to realise that he was gone and that there would be no more. Or when my body hadn’t recognised that my baby had died and my milk came through right on point. My days were black and so painful that I had often thought about the possibility of not being here, as it was an easier route than having to live with such pain. Having my daughter is what kept me alive. She has been my rock more than she will ever know. Having to tell our daughter that her baby brother died is one of the hardest things I’ve had to do. Her grief was too much to bare. She cried tears I had never seen come out of her before – begging us to give her baby brother back and not realising that death is final. No child should ever have to learn the concept of death at such a young age. I was not prepared for this, I had been preparing to bring a baby home, not this! How can something be so cruel.

Our house was inundated with flowers, memorial plants, and cards. I knew it was hard for people to reach out to us but the support and words of comfort we received meant the world to us. The support you get from people is paramount to your recovery and stays with you for a long time after. I’m so grateful for my friends. They were brave to come into the black hole that was my house – they came in and picked me up off the floor, they cried with me and wanted to hear all about Matthew. I will forever treasure my friends and family who supported us through our darkest days and continue to do so.

‘Grief is unquantifiable, yet is very real. For many it becomes a part of their story in a way that alters everything, in ways far more complex than language has capacity to hold, for it is a matter of the heart, not intellect’. – ‘Why baby loss matters’ By Kay King

If you are here reading my sons story because you too have lost, I am truly sorry for the loss of your baby. There is nothing else quite like it. It’s a truly devastating and monumentally painful heartache that alters every notion of reality. ‘The world stood still’ is a phrase that has taken on a whole new meaning for me especially during the time just after our loss when everything was hugely overwhelming. It was impossible to know how to fill that time. Loss and grief are personal journeys and despite many theories that have been built into our culture in an attempt to understand them, I have learned there is no definitive way of doing baby loss ‘right’. For me, it was both a physical and mental endurance. It is a rollercoaster. I had my bad days, good days and happy-sad days. Some days I was just surviving. The one thing I’ve learned is that you can never be prepared for how you respond to loss. In a logical mind, you think you know how you would handle loss and grief, but you never know until you are faced with the depths of it – and even as you’re progressing through you can still be taken by surprise. I found that people often had an opinion on how they think you should deal with your loss, but the only way is your own way. There is no right or wrong way – the way each of us experience baby loss is unique and we need to do whatever works best for us. You can’t read or think your way through it and you have to permit your grief to take its course being led by what you feel.

I know it may not seem like it just now but if there is anything you can take from my sons’ story is that you will survive this. You will never get over it – but you will learn to live with it. It will be a hard-fought battle but happiness and laughter does return. Please hold onto this in your darkest moments.

‘Losing a baby in pregnancy through miscarriage or stillbirth is still a taboo subject worldwide, linked to stigma and shame. Many women still do not receive appropriate and respectful care when their baby dies during pregnancy or childbirth’. – ‘Why we need to talk about losing a baby’ by World Health Organisation

One of the most painful things in the aftermath was learning the true extent of the taboo that still exists around baby loss. This can further compound your loss because you can feel lonely and isolated. Sadly, baby loss is life. It’s a horrible reality and it happens to people more often than we know, and the statistics are horrific. With 1 in 4 pregnancies ending in loss, we can all be linked to someone we know who has been impacted in one way or another. I have found that when talking about my own loss many have opened up to me and said, “me too”. The taboo is starting to shift – I hope this continues so that we can break the silence and make way for better support and care. I know the power and healing of communication and if we are to end harmful taboos, we must be fearless in our conversations. If we work together in the society that we live in, we can create a safe space for women to open up and talk about their babies should they choose to. By talking we can promote change, support mental health, and give way to better care and support. This is why I choose to talk about Matthew and this is why I’m writing his story – we have the power to change this, we all do.

‘Only someone who has lost a child can truly relate to the pain one goes through when you lose a baby you have created and carried. It is impossible to find the words to accurately describe it; it can only be understood by first-hand experience’. ‘Saying Goodbye’ by Zoe Clark-Coats

To know where to turn for support is an important part of healing and the language we use to support those living with loss can make all the difference. With the taboo that still exits, its crucial to acknowledge why the profound quality of peer support is so important. Knowing that you are not alone and that there is support out there gives you strength to know that you too can overcome such loss. This is where charities like Held in Our Hearts need to exist. We don’t want them to exist and it’s not a ‘club’ any parent wants to be a part of. But my goodness I’m so grateful they do! Looking back, I don’t know how I was even able to contact them – my days were so black, but I’m so glad I found the courage to reach out. I was like a rabbit caught in headlights. I knew I couldn’t face this journey on my own, I was drowning and I literally couldn’t breathe. So, at 3 am one morning – in sheer utter desperation and in fear of losing my identity as a ‘strong woman’ I sent them an email. They helped us to navigate the early days and they continue to guide us as we make our way through one of the toughest journeys that we’ll ever embark upon. They allowed a safe space to talk where you can share your rawest emotions. I never needed to explain or justify why our loss hurts so bad, they understood and responded with empathy and compassion. I was never met with comments like, “at least he wasn’t a real person yet”, “shouldn’t you be back at work by now?”, or “why are you still upset?”. There was never any misunderstanding about how deep our loss runs. We talked, they listened, they guided, they validated, and never diminished our loss. They also recognise that it’s not just mothers that grieve and that fathers grieve just as much. Men are often ignored as most of the focus is on the mothers. My husband was often met with questions like, “how is she getting on, is she ok?”, “it’s ok that she takes time off work but it’s not ok for you to be off”. No one asked him how he was doing. He felt constant pressure to be strong for me and to be a ‘man’. This can have a huge impact on your wellbeing. I knew my husband was in great pain and was in need of support too.

Held in Our Hearts are flexible in the support that they offer knowing that we’re all different in our grief and needs. They understood that our daughter was grieving too. They sent us some children’s books that helped us to explain the loss of our baby to our daughter in a way she could understand. A simple yet very powerful thing to do. Annabel often recites the words quoted in the books “It’s ok to cry”, “He is the salty tears that we cry”, “He is the sand in between our toes”, “He is the dimples in our cheeks” … and “He lives in our hearts”. I find great comfort when I hear her randomly reciting those words. We’re slowly coming to terms that we will never get over the loss of our son. However, we are learning to live with it and with each day that passes we find a way to honour him and to enjoy the gifts that he has left us with. He has given me more love than I thought I ever had the capacity for and I am more enriched for having him in my life. I know that the journey that lies ahead for us is unknown and the thought of this is terrifying. But knowing that I have Held in Our Hearts by my side gives me strength and I know that I’m ready for whatever lies ahead. I hate that Held in Our Hearts exist, but they need to. Thank you, Held in Our Hearts, without you I’m sure there would have been many more black days. ‘A parents’ love never dies; you hurt because you loved, you will continue to hurt because you continue to love. Love will prevail, it will keep you afloat and where there is deep loss, there is also deep gain. Our babies simply cannot exist without leaving behind something great, and although nothing can ever make up for the treachery of a little life stolen, they are deserving of warm thoughts and a smile at their memory’. ‘Life after baby loss’ – by Nicola Gaskin” — So how can you help? 🌈Share all our campaign posts 🌈If bereaved, and feel comfortable, please share our campaign along with your story of how peer support helped you 🌈Consider donating to https://www.justgiving.com/campaign/wewillwalkwithyou… or setting up a monthly contribution