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Baby Loss Awareness Week | Marking the all too brief life of an angel named Evie Rose

9th October 2019

The death of a baby is not a rare event. It can happen to anyone. Taking place 9-15 October every year, Baby Loss Awareness Week aims to raise awareness about pregnancy and baby death in the UK. Throughout the week bereaved parents, their families and friends, unite with each other and others across the world to commemorate the lives of babies who died during pregnancy, at or soon after birth and in infancy.

 

 

 

 
 

 

Helen is a mummy to three beautiful children. Her eldest – Evie Rose – would have turned 10 next month.
Tragically Evie Rose passed away peacefully in Helen’s arms at just 2 days old.

 

 

 

 

 

Helen’s story…

 

In just under a month it’s my eldest little girls 10th birthday. Her name is Evie Rose.

Only she’s not here for me to know all of her favourite things, to give her big birthday kisses and cuddles and throw her a birthday party.

At just two days old she passed peacefully in my arms.

I’d had the perfect pregnancy, I loved being pregnant. After the upset of a previous early miscarriage, it had hit me just how ready I was to be a mummy – just how much I wanted to have a family.

 

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I wanted to do things right. I took the NCT classes, read all the books and ate all the right foods and after an early ‘implantation bleed’ scare, I breezed through my pregnancy.

So when I was woken with contractions in the early hours of Halloween 2009 at exactly 39 weeks I couldn’t contain those little butterflies of excitement – I was having a baby!

The whole of Halloween was the most wonderful build-up to finally meeting our baby.

We’d been living in a building site whilst the finishing touches were made to our newly extended home. Our home was finally complete and everything just seemed to fall in to place.

It was the Strictly Come Dancing Halloween special – but despite my best attempts to distract myself through the contractions – taking Paracetamol, having a warm bath and using my TENS machine – at almost 8pm (18 hours in) it was time to go to the hospital.

It all felt so right –  never in a million years had it crossed my mind that I wouldn’t be coming home with my baby.

 

 

Opening the door to my new world

My labour went on and on through the night but when I was fully dilated I experienced major complications.

It all very suddenly went horribly wrong.

The midwife called for the consultant and they managed to get my baby girl out quickly, but little did we know at that time that it was just too late.

I still remember my body instinctively responding with a smile and a feeling of elation at hearing it was a baby girl, but that incredible feeling of joy was quickly quashed.

My beautiful baby was laid over my tummy, just as I’d imagined and dreamed of for her first skin-to-skin, but she was floppy, her skin was tinged with the colour blue and before I got to take her in she was taken from me and whisked the NICU to be resuscitated.

The midwife asked, “Do you have a name for your baby?”

My husband, Martin and I looked at each other and managed a smile, then replied “Yes, Evie Rose”

Without knowing, I’d just opened the door to my new world. It was the 1st November 2009 and it was grey, wet and windy outside the window of the delivery room I was laid up in.

People came in, people went out. The room looked like a blood bath.

Our family, who were eagerly awaiting the news of our baby, were given the news of complications and NICU and dreams of a bouncing newborn were replaced with fear and anxiety.

After what felt like the longest few hours of my life, in a state of panic and confusion and desperate to hold my new daughter close to me, we were eventually allowed to see her in NICU.

My precious baby girl was lying on a cooling mat, attached to so many monitors.

I remember the midwife looking at us through the NICU window with tears in her eyes. I should’ve known then from her expression of sadness and those tears that my baby wasn’t going to be coming home with me.

One of my most precious memories is the moment when we first walked up to Evie – I just couldn’t stop looking at her. I needed to soak up every inch of her. Memorise every little part of my baby girl laid there helpless.

“Hello Evie, it’s Mummy,” I said. In that split second, she opened her eyes. I smiled and hoped that it would be the first of many times.

Little did I know that would be the only opportunity I would get to see her open her little eyes.

 

My nightmare began to unfold…

I still remember our first conversation with the neonatal consultant who had the difficult job of laying out exactly what we should expect.

Evie had suffered a very significant ‘insult’ to her brain’s supply of oxygen.

He informed us that they were doing everything that they could and were carrying out tests to establish the severity of her injuries.

Those words hit us like a brick wall.

The results from the tests weren’t good. Hell began to unfold. We didn’t have time for it to sink in. Everything was happening so quickly.

As two rational people both with medical backgrounds, I think we both just knew.

The doctors told to us that there was little to no brain activity – when they turned the life support machines off they weren’t sure if we’d get 10 minutes or 2 hours with Evie before she passed away.

Our world was shattering before our eyes.

On autopilot, we quickly organised a christening in the hospital for Evie. Our closest family attended and then we were able to take her off her cooling mat and spend the remainder of the time she had left with our beautiful girl. Our firstborn child.

Tears rolled uncontrollably down our cheeks. Our hearts ached knowing we might only have, at best, a few hours with our child before she died.

 

 

Making the most of every last second

Despite the enormity of what we’d been told, we both seemed to grasp that we needed to make the most of every single second we had with her.

So the tears were wiped away. We wrapped her up warm in the cuddly soft blanket my mother-in-law had knitted for her and we sang nursery rhymes to her, covering her in endless kisses and cuddles.

 

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Her little body warmed up and the colour came back in Evie’s cheeks. She was perfect in every way. It felt incredible to just hold her and smell her.

As the afternoon turned into evening, we realised Evie wasn’t ready to leave us as quickly as the doctors had initially thought so we invited close family to come and spend some time with her too.

Watching my mum and my sister cradle Evie in their arms was everything I’d dreamed of and more. I tried not to think about the inevitable and clung to each and every moment we were given with her as a family.

 

baby loss

 

In those precious hours, we bathed Evie, we took her for a walk outside the hospital and of course, we took lots of photos. I was terrified that I would forget what she looked like, what she smelt like. Worried that I would forget how beautiful her perfect features were. I wanted to remember every inch of her.

Focused only on each moment, we hadn’t thought about what might happen beyond the time we thought we had with her and come the early hours of the morning, she was still with us. We were told to get some rest and a move to the local children’s hospice the following morning was discussed.

 

baby loss

 

For a moment we had that surge of hope – maybe our girl would defy the medical odds?

My sister and brother-in-law camped out in our hospital room – just wanting to be there for us. We desperately needed them. The mood was light, we sang Evie songs, we even laughed. It was as if we’d forgotten there was a tragic near-end to all of this hell.

Both Martin and I tried to shut our eyes for 10 minutes comforted knowing Evie was in the arms of both of them. But when the clock is ticking, and time is running out, sleep doesn’t happen. All I wanted to do was hold her and never let go.

 

Time to say goodbye

The hours passed and Evie’s breathing began to deteriorate. We knew there wasn’t long left and it was time to say goodbye. I clung to her and breathed in every bit of her.

As reality set in, the tears started to flow once more. We handed Evie over to my sister and left the hospital.

Walking out of that hospital without her was the most heartbreaking moment of my life. I was empty and numb on that journey home. The sun was rising – a new day – it should have been the happiest day of our life – the day we took our daughter – our firstborn child home. But everything had changed.

I literally staggered out of the car and into my bed and sobbed myself to sleep.

 

Sleep became my new best friend

I wanted to sleep the pain away. The only downside to sleep was that every time I woke up I’d remember the nightmare I was now living.

Our house, the nursery – everything was ready for Evie’s arrival. The cruel reality of stepping foot in the nursery and the emptiness in my arms hit me over and over.  I sat down in the nursing chair with only memories and mementoes of my baby and I cried and cried.

I had to ask Martin for space. Every time I cried, which was all the time, Martin would wrap me in his arms and tell me we were going to be ok. As much as I needed to know he was in this with me, I just couldn’t cope with it.

I needed to sob my heart out and I just couldn’t listen to anyone telling me I’d be ok, because I couldn’t see how I would be ok. I couldn’t see beyond the sadness and despair.

 

The power of family

Over the next few days in the lead up to Evie’s funeral, our families became our house guests. They were grieving too, for themselves and for us. There was no escaping the sadness and pain of grief, it was everywhere, every minute of every day.

My mum was my chief carer – she made sure I ate and took care of myself so my body would heal – but my own wellbeing was the least of my worries.

My body that had prepared itself for the arrival of our baby for last nine months and served me another cruel reminder of the beautiful little girl I had lost when I started producing milk.

My brother was there at the drop of a hat for us both. He was the logical thinker at a time when emotions were often clouding our judgement. He was a huge support to Martin. We had a lot of questions and we wanted answers, but now wasn’t the time. He was there whenever Martin’s grief turned to anger and he needed someone to vent at. There was no anger from me – I just felt numb from head to toe.

My brother helped us set up a website with details of Evie’s funeral. It featured photographs of our beautiful girl and provided a place where people could leave their condolence messages.

I read those messages again and again and again.

The tears would flow. On one hand, I was so grateful for everyone’s love, but on the other hand, it was another harsh reminder that I was now in a club that everyone fears – the club for bereaved mothers.

My sister was such a rock for me. She’d been so excited for our baby’s arrival. We are so close and I could see she was living my pain, but she was always one step ahead; she always knew the right thing to say.

I was so scared I’d forget what Evie looked like and this gave me nightmares. My sister had pictures of Evie framed and placed next to my bed and around the house so I could always see her.

It was my Mum and sister who dressed my little girl ready for her funeral. I couldn’t bring myself to do this. I didn’t have the strength and I really wanted to remember Evie is those moments when I held her, still alive. Still breathing.

We picked out a beautiful outfit and blanket and they took lots of pictures of my gorgeous baby girl sleeping.

My sister also took the lead in planning Evie’s funeral. She guided us with choosing flowers, the readings and the music. She helped us to make decisions no one ever wants to make and certainly no one prepares for.

Did we want to cremate or bury our child? Which mummy prepares for this?

The day of the funeral arrived. I walked out of the house for the first time since I returned from hospital and looked straight at the black shiny funeral car waiting for us I just broke down. How the absolute F**K did I end up here?

Just six days ago I was about to give birth and the happiest I’d ever been and now my world had come crashing down around me. I wanted to curl up and die right there and then.

Seeing the tiny coffin just a short distance away from where I sat was too much to bear. I switched into robot mode. I realised it was the only way to get through the funeral. I just had to go through the motions. Get through the next few hours.

My husband had taken a lot of strength from Evie’s battle to stay with us and those precious hours that we’d had with her and he gave an incredible speech at her service. He wanted to share with the world how much Evie was loved and how proud he was of his daughter. He really did his girl proud.

We were both so thankful to everyone who came to pass on their condolences. It was an opportunity for us to talk openly and share our memories of our little girl.

 

Keeping Evie’s memory alive

baby loss

 

Images of Evie were displayed on a big screen after the service. It was so important to us that everyone was able to see her and together we could ensure her memory was kept alive.

The day was too much for my dad, a man who as always avoided showing his emotions, and with a few well-deserved single malts after the service, he literally crumbled into a crying heap before me.

I saw the pain in our parent’s eyes. Not just for grieving for the loss of their grandchild, but watching their son and daughter endure the daily gut-wrenching pain of losing a child.

I took comfort in little signs that Evie was all around me.

As I sat on my bed looking out of my bedroom window after the funeral an incredible rainbow appeared – spanning the whole width of my window frame, hovering over the fields and crematorium where we’d just said our goodbyes to Evie. If ever I needed a sign that she was there with me, it was then.

Every time I see a rainbow I think of my baby girl and brings a smile to face – something I never thought I’d be able to do again in those early days.

There was no relief from the thoughts in my head. The same overwhelming, exhausting questions would run through my head day in, day out.

Can I survive this?

How was I going to live without my daughter?

 

Sources of guidance

It was through a friend that I was told about SANDS (Stillbirth And Neonatal Death Charity). I nervously set-up a login on their website and clicked on their online community for bereaved parents.

It was like I’d stepped through platform 9 ¾ into a whole new underground world of grief and sadness. I started reading others stories and instantly I realised I wasn’t alone.

I remember reading a post from a lady who had lost her baby girl in similar circumstances just three months earlier and I reached out to her. That shared connection from the pain of losing our babies brought us together and our friendship continues to this day.

Another big source of guidance and reassurance was reading books written by other bereaved mothers. The hospital gave me one book and as I read through it page by page, it was almost as if the author was talking directly to me.

The first page said “If you are reading this book you probably have one question you need answering most right now: ‘Can I survive this?’ Well, the answer is yes … you take it 1 minute, 1 hour, 1 day, 1 week, 1 month, 1 year at a time.”

It was enough to know I just needed to keep putting one foot in front of the other.

Over the next few weeks, I spent most of my days reading bereavement books. I’d also received many sympathy cards from people I barely knew, friends of friends of friends, people who had lost a child. I read those cards every day, twice a day, three times a day. Their optimism slowly pushed me to move through this nightmare I was living. They gave me hope.

 

Grieving for Evie

When they say people grieve differently, it really is true. Martin sought ways to remember Evie that gave him a purpose and something to occupy his mind. He organised for his friends to get together to celebrate Evie’s life and asked for black armbands to be worn by his colleagues at a rugby match.

It meant nothing to me, my mind still felt like mush and I couldn’t think of anything other than getting through the next hour or day.

Just a few weeks after losing Evie, Martin returned to work. He found it really tough, especially when people were worrying about such trivial things that were so unimportant in the grand scheme of things. He wanted to keep Evie’s memory alive and would bring her up in the conversation all the time – he was so desperate to share his story and let everyone know about his girl.

 

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The first time I dared to venture out of the house was horrible.

In my mind, I’d planned to go to the shopping centre for about half an hour and then come straight home. I didn’t need to speak to anyone or see anyone I knew – I certainly didn’t want to. I hadn’t really thought it through. A shopping centre during school hours, full of mummies and their prams. These were not the scenes I needed to see and it was enough to put me off leaving the house again for months.

Mum and Dad relocated to Leeds to be there for us and our new arrival. Little did I know just how significant this move closer to us would be.

Instead of the baby duties they’d signed up for, they were now my constant. They would turn up at my house every morning. Popping round to get me out of bed and just to keep watch on me I guess. I got so used to hearing them downstairs, it was comforting, even if for most of the time I didn’t have the energy to bother going down.

 

 

Life after Evie

Weeks turned in to months and winter turned in to spring and I’d barely left the house. I didn’t want to see people. I didn’t want to hear about their ‘happy families’. I didn’t want to watch everyone carry on as if nothing had happened.

I’d also made the decision not to keep in touch with all the ladies I’d connected with at antenatal classes. So I distanced myself from pretty much everyone.

My garden became my sanctuary. I happily spent hours pottering in it. Distracting myself from the pain and the tears. A place where I felt the most comfort for a long time.

One of the most difficult things I found in that first year after Evie’s death was accepting that sadness and crying was part of my daily routine. In the first few months the sadness could consumer me for days. There were many days when I just didn’t want to get out of bed.

As the months passed the sadness would come and go in waves, consuming a couple of hours here and there. Sometimes a whole day.

It felt like I was set for a life sentence of sadness – always taking one step forward, but two steps back. As a positive and optimistic person, the sadness really challenged my whole being.

I knew I would never be the same person I was before Evie’s death and for a good year, I wasn’t sure it I’d ever be freed from the dark place I was living in. I wasn’t sure if I could ever be happy again and this thought really scared me.

As time went on I was aware that people talked about Evie less and less. I found it so hard. I still desperately wanted to talk about her and hear her name.

I knew I needed to get some help. I needed to speak to people outside of my family. I still needed to talk about me and Evie, even if others were talking about her less and less so I started talking to a baby-loss specialist counsellor.

I can’t put into words how much this helped me. I don’t think I’d be where I am today without that support.

 

All the ‘Firsts’

A lady who had also lost her child told me that I needed to just get through that first year. All the “firsts”. My birthday as a new mummy, the first Mothers Day, the first Christmas as a mummy. But could I even call myself a mummy when my baby wasn’t here?

Every single ‘first’ gave me a stark reminder of what I was missing out on. I realised I needed to be kind to myself and just accept that if I just wanted to hide away then I had earned that right to do so.

The lead up to Evie’s first birthday sent me back to those early days of when we’d first lost her.

We hadn’t even got through the summer and I remember hearing the first mention of Halloween, it made me feel sick. How could I avoid all talk of Halloween and Bonfire night? It was impossible. The new series of Strictly Come Dancing started and it was an unwelcomed weekly reminder of how my life had de-railed.

As her 1st birthday got closer I just wanted to go to sleep and wake up on the other side, but I knew I owed it to Evie to live through this sadness and suffer her loss. Her birthday came and I welcomed the opportunity to release all the emotions that had been building on the run-up to her birthday.

Martin and I enjoyed a walk together to mark her birthday, but we’d completely underestimated how much the day would take out of us. We’d said to our closest family we’d like to mark the day with a small family celebration and tea party. I realised quite quickly that I didn’t have the energy left in my tank to put on a smile or talk to anyone and so I just took myself off to bed.

With each year that passed, or the run up to Evie’s birthday, I was never quite sure how I would feel on the day itself.

I remember thinking everything was getting harder on the run-up to Evie’s 4th Birthday. Time certainly was not healing, if anything I was being pulled further and further into the very dark days again and it was taking its toll. The sadness was effecting everything and I was struggling. Struggling to eat, struggling to do anything and I self-diagnosed myself with depression.

I went to see my GP and I broke down in tears as the receptionist asked me a completely innocuous question. I just wanted someone to take my pain away.

The doctor sent me on my way with the antidepressants I’d requested. I went home and observed the box before I took my first tablet. I knew everything I needed to know about them, the risks, the benefits.

As soon as I’d taken that first tablet I gave myself a talking to; ‘Helen you know this is just grief, this isn’t depression. You can get through this.’

I never took another tablet.

 

A smile for Evie

People told me I’d eventually be able to think of Evie and smile. Talk about her without tears rolling down my cheeks. I wondered for a long time how long it would take to get there. Could I ever get there? I did get there – in fact I remember explicitly the feeling of guilt that coursed through me the first time I laughed and had fun.

I was so worried that if people saw me laughing that they would assume I was ok and they’d stop asking me about Evie.

My sister understood my fear, and she always knew when to would start a conversation about Evie. This meant everything to me. She was able to sense when my emotions were building and would help me process my feelings and deal with them, rather than bottling them up.

 

Having Faith

Thankfully, Martin and I supported each other through the bad days.

I’d heard of couples who had grown apart because of the loss of a child. I completely get it. It challenges you and your relationship in ways you could never imagine. We both made a promise to each other that Evie would always be a big part of our lives – we vowed we’d always feel able to talk about her and cry if needs be.

I’m not a hugely religious person, but in the darkest of days, your faith comes in to question.

But I needed to know that my baby girl was safe. So I pictured her in Heaven with my late Grandma and Aunty – both of them showering her in love and spoiling her rotten. This gave me some peace.

As morbid as it sounds, I also started to dream about when my time comes. When I will be reunited with her. When I can hold her again.

Oh, what I would give just to hold my little girl once more.

 

Perspective

I don’t think there are many mums-to-be who consider what might happen if the baby’s heart drops in labour, if it needs resuscitating, or worse still, the birth resulting in their baby having severe brain damage and dying from lack of oxygen during labour.

Most mums-to-be speak only of their fear of labour pains – how they will cope? Discussions over birthing plans – what they want and what they don’t want.

I want to scream at them… “FORGET ALL THE INSIGNIFICANT STUFF”- you won’t care about the pain, you’ll get over the c-section and episiotomy wounds – just get your baby out safely!

 

The shocking facts 

I am slightly envious of those women who have their ‘at-home water births’. But ultimately labour is about one thing only, getting your baby out safely.

I completely see the benefits of de-medicalising labour, but the stats around avoidable deaths linked to trauma or events during birth are just too real for me.

Around 500 babies die every year because of a trauma or event during birth that was not anticipated or well managed. Some babies are stillborn and some die after birth.  Many of these deaths, when they occur at term, could be avoided with better care.

Many say these numbers are insignificant when you consider the hundreds of thousands of live births each year. I come at it from a slightly different angle these days. If your baby has made it as far as the delivery suite then I see absolutely no reason why that baby shouldn’t be going home with you.

With all good intentions, women gloss over their birth ‘scare stories’ when talking to other pregnant women and even in our NCT classes we barely mentioned complications. I get it. Why would you want to put the fear of God into pregnant women?

Can you imagine you or your child having any sort of operation without the Doctor running through the risks of complications with you and what will happen in the event of a complication? No … of course not, yet we treat childbirth differently.

I realise now I just didn’t know what I didn’t know or that subconsciously I didn’t want to know. Perhaps worrying that by knowing about the darker side of labour and childbirth, didn’t it mean I was bringing in more negative thoughts around my own?

Babies are dying in the UK every day and it’s not ok that we just accept that. More needs to be done.

Sharing Evie’s story hasn’t been for me but it was something that I wanted to do, not only to celebrate her memory but also to raise awareness for other mums to be. 

The birth of a child should be a wonderful experience and a celebration of life but sadly for some that is not the case and so I hope that by finding my courage to share Evie’s story it may help just one other person to be brave and to speak up if they have any worries or concerns about what’s happening during their own labour.

God bless my sweet angel Evie, and every other angel who has been taken far too soon.

Mummy x

 


 

 

To find our more about Baby Loss Awareness Week please visit: https://babyloss-awareness.org/

 

1 Comment

  1. Kathryn

    Helen,i’ve read every word and cried for most of them, we met a few years back, but not within this forum.
    I met you after Evie had passed away and had no idea the pain you were going through. To me you were just a charismatic ‘forever living’ seller.
    Really hope that you, Martin & your family are doing well. Best Wishes

    Reply

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