*** Contains images of baby loss that some may find distressing***

Baby loss awareness week is so important to be a part of and highlight because it is a time to remember all of the babies gone too soon. I wanted to remember these special babies this week specifically and allow their stories to be told.

I wanted to break the silence for them.

In that dark and surreal moment, when people find out that their friend or family member has had a baby that has died, the majority of people can understand how hard and absolutely horrific it must be for them. They can, without too much effort, imagine the nightmare those parents must be facing in contrast to the joy that they once projected. However, with the passing of time and as the bereaved parents adjust to a new normal, I believe we are not always so acutely aware. We as a society lose sight of their pain and do not see of the long term effects that baby loss has on individuals and families.

This post came about as I wanted to highlight that ongoing grief for you all during this years Baby loss awareness week. It is called “My loss Then & Now” and I have decided to try something new – I wanted to share with you some of my friends stories and loss experiences who I know from the baby loss community, and allow them to share with you how their loss/grief was back then, compared to how it is now so you can see and be aware of the long term.

The Loss of a Baby…

Loss, and its subsequent grief affects us all in such diverse ways. It is a known fact that men and women grieve differently, just as various personalities grieve differently too. Loss affects each person in such unique ways and where for some It can enable and motivate them to change the world,  for others it can disable and debilitate them in all the try to do.

Grief can be triggered by lots of things and then triggered by nothing.

For some it can come in waves and for others they can feel like they are constantly drowning.

Some remember with fondness whilst others see only pain and sadness – suffocating in hopelessness.

There is no right or wrong way.

There is no time scale.

Baby loss is personal and it is so important to remember that people respond to it in their own individual ways.

The loss of baby is such a foreign thing for those who face it. For me it was a living nightmare and most agree that it goes against the grain of what we know to be the circle of life! You see, with the death of a baby, death comes before life has even been experienced and as such it is a unique loss in comparison to others we face in life. That joy of a new baby and the new adventure of parenthood isn’t just lost and tarnished, but a whole life time or hopes and dreams are gone in a moment. I think that wherever we  are at in life, and however we grieve this difficult loss, we cannot deny that those who have been touched by the loss of a baby are never the same again. And yet whilst we are changed, we also evolve, and with that so does our grief. It is relief to know that we are not forever stuck in that debilitating rawness (though at the time it may feel so) because as grief changes over the years, so do we in how we are able to carry it.

I have been thinking about the shift of grief over time and our ability to evolve and learn how to carry it, for some time now. And, it was all of this that made me decide to highlight the effects of baby loss through others stories – because I know from years of attending SANDS and my own experiences, that grief does change and we do gain the strength to carry our loss in a more confident way, but it still leaves one question – does it ever really leave us?

I know that Some would believe so as I often hear the old favourite of “time is a healer” – which often falls so easily from peoples lips. But is it? does time really heal? Or does time only enable you to carry your loss in a less awkward and upsetting way?

Is it always going to be there and is the truth that we just know how to handle and live with it better throughout the years?

Please read on and meet some of my lovely baby loss friends and hear for yourself their honest and raw experiences as they illustrate this. We hope that if you are going through loss it will be a support and bring you hope in some way. And, if you haven’t, that you will gain a little more insight into the long term effects of losing a baby.

This year I wanted some  awareness of how much baby loss really affects us. I want you to be aware that whilst grief shifts, and people seem to be doing well; the pain, memories and longings for your child as a result of losing a baby will never really leave you. You are changed forever, and a part of them is always going to be with you. These stories are evidence of that…evidence that however good life seems, it feels like there is always something (or someone) missing – and that is a hurt that even time cannot erase!

My Loss Then & Now 

Chris Binnie – Henry’s Dad  

Our son Henry was stillborn at 38 weeks on Friday 2nd May, 2014 at 9:05pm. He had a full head of hair and very big feet. He was small, at 4lb 13.5oz, but perfectly formed. In the early days, weeks, and months, our grief was very raw. I had some really dark days – days where I didn’t think we could survive, and days where I didn’t want to survive any longer. As a bereaved dad, I especially wrestled with the sense that so many people overlooked my grief, thinking that as a man I’d be strong and just ‘get over it’. You don’t ever ‘get over’ the loss of your child though. Over time, while our grief has never gone away, we’ve learnt to live with it as a part of our lives every day. One thing I’ve realised over the years is that grief is not a straight-line progression. The whole thing is an absolute rollercoaster, and it’s okay to have bad days. It’s okay not to be okay. If you have days where all you do is survive, that’s okay too. Courage doesn’t always roar. Sometimes it’s the quiet voice at the end of the day that whispers “I will come again tomorrow”.

This journey is your journey and yours alone. There’s no ‘right’ or ‘wrong’ way to live this. You just do whatever you need to do to survive. For me, it’s been charity work and trying to support others through it, or better still, improve care so that less families walk this path in the first place. Find what works for you. You’ve got this. Remember one thing though: however isolated you feel, you don’t have to walk this path alone. I will walk it with you.

Chris works for the Yorkshire charity “Our Angels” and speaks at many trainings and events to help improve care. He also blogs about he and his wife Briony’s loss journey at pinecones and study days and has recently been nominated for “Inspirational father” at this years butterfly awards! 

Emma – Charlie’s Mum 

Our precious boy was born on the 19th April 2008 at 4.15pm, a moment in time that changed my life forever. He was our much wanted 3rd child but for reasons unbeknown to us he didn’t get to stay here and grow up as part of our family.

Losing our boy is the single most painful moment in my life and in the early days I was not sure I would ever smile or laugh again. I’m glad to say I was wrong. Slowly, life began to take on a “new normal “ – a life I never expected but one that I had to learn to survive. I live everyday carrying around my grief. I think of my grief as a huge, heavy, invisible backpack. I wear it on my back every single day and even though no one can see it, I feel it’s heavy burden. Over time this backpack has not got any smaller or lighter, my grief is still all there but what has changed is me. I have become stronger, I have learned how best to carry my grief so although I still carry it everyday it doesn’t seem so heavy now and I am used to carrying this load.

The loss I feel at living everyday without my son has not lessened but I know that I am strong enough to carry it with me and in some ways I now find comfort in this. Charlie is with me every step of my life, he lives in my heart, my constant companion and the reason I am who I am today.

Emma set up “Our Angels” charity in January 2009 – a support group for those affected by the loss of a baby in Harrogate and surrounding areas. In 2012 Our Angels won the nhs Best improvement in patient experience and in October 2015  and Emma won the Harrogate and district volunteer of the year – this award then lead to her getting an invite to the Queens garden party at Buckingham palace in May 2016 – all in Charlie’s memory. 

Claire – Alexandra’s Mum 

Then:

Alexandra was my first pregnancy. My first baby. My first daughter. She was the first grandchild to my parents and my in-laws. She was everything we had hoped and planned for however; our plans went somewhat awry.

My pregnancy lasted 42 weeks. We’ve since found out that my first midwife hadn’t followed the up-to-date guidelines regarding induction and had miscounted the days and booked me over the limit by a day. Not that that day mattered to our outcome. At some point in the last 4 weeks of pregnancy my placenta had stopped working properly and I didn’t know. No-one would’ve known really. The only tangible reason (that was still a maybe in our report) was VUE (villitis of unknown etymology). Had Alexandra been born at 38 weeks; odds on she would’ve been ok.

I’ve written about my pregnancy and what happened during her short life before (https://afteralexandra.co.uk/2018/05/25/the-story-of-alexandra/) however I’ve never really compare my then (when we lost her) to now: a family of 4 but without our 1.

I was utterly shell-shocked. Some days I couldn’t believe I’d woken up each morning. I honestly thought my heart would stop. I was broken. Bringing home my baby should’ve been the easiest thing to do – after all I was low risk and my pregnancy had basically been fine. I was astounded that this should happen to me. I was even more compounded that we didn’t have a definitive reason. I was terrified of having a post-mortem in case that they could prove it was my fault. I truly believed it was my fault even though I had followed all the advice to the letter.

When we left hospital the Indian summer was in full swing. I was waiting at the entrance for Andrew to bring the car round to pick me up and I was angry that the sun shining; surely it should be raining and thundering and lightning. Pathetic fallacy right? I felt pathetic; empty and as if I would fall off the earth at any moment. How dare the world carry on and look so beautiful?

As the days turned to weeks it was just survival. Get through an hour; a day; a week. The second half of 2015 was truly awful as I lost my Grandma then my baby girl and then my Grandad in the space of 3 months. It was ludicrous that so much heartache was deluged on me at once. I’m still amazed that somehow my body didn’t give out.

Our counselling in the community from Martin House Children’s Hospice was a major factor in keeping us afloat.

And Now?

We have another little girl called Ophelia who is about to turn 2. We talk about Alexandra regularly. I’ve been like a “normal” Mum and got their names mixed up sometimes. I’m practised at answering the small talk questions. I go to SANDs meetings when I need to and sometimes when I don’t because I may unknowingly need that top up a week down the line. I follow a lot of bloggers and have recently started my own. I read a lot about baby loss and realised that I wasn’t bonkers; others felt the same way.

The dark clouds have parted but it took a long time to do so. The shell-shock returned when not only was Ophelia born fine despite some jaundice but she actually came home. I didn’t know what to do. I was terrified of getting too close too quickly in case we had to go into crisis mode of deciding treatment levels, when to turn off machines etc. She looked so much like in Alexandra on her profile that sometimes I couldn’t bear to look at her. Other times I couldn’t put her down as the last baby I put down in a cot was for Alexandra when I had to leave her behind.

Again it was a case of time. No new Mum really knows what they’re doing and we all have to learn on the job. I just had another layer of fear. We survived that first year with Ophelia.

I’m better at recognising when the Black Dog is coming to town and acknowledging the visit and taking better care of myself. I’ve set ground rules for myself. If something is going to be too hard for me; then I will politely decline.

I’m not afraid of talking about Alexandra; I’m better at judging who deserves to hear about her. In some ways I’ve got thicker skin in the sense that things that used to bother me just don’t know. There are other things that will really upset me now; the assumption that I’m somehow fixed because we’ve had another baby. Or someone getting the glazed look when I talk about Alexandra. Or people not remembering Alexandra’s birthday or acknowledging her existence. Or someone not interacting with Ophelia when she’s a pretty awesome; happy; cheeky and fun kid to be around.

What I do find frustrating now is when I try to explain that something might still be challenging for me the  response is “oh well it’s better now.” I may be “better” in terms of not sobbing day after day; night after night; but I’ve never going to be fully healed: my baby still died in my arms. I still had to organise her funeral and I still have a child missing out on all that life has to offer. That child will always be missing from her cohort. I see the group that she should’ve been hanging out with and I see the gaping whole.

How is life different? I’m better at making decisions in terms of what I’ll put up with. I know how to remove myself from situations that will be upsetting (for the most part!) and this experience has probably made Andrew and I more honest with each other.

Alexandra made me a Mum. I’m Ophelia’s Mum too. I have to be their Mummy in very different ways but always being their biggest ally and biggest fan.

Claire is involved with Leeds Sands and writes about her journey at After Alexander

Jess – Leo’s Mum 

Leo died at 37+1, and was our first son. He had a head full of fair hair and really big feet. He should be here, with us now. But he isn’t. And that will always hurt.

I guess I would say that the acuteness of grief has softened but the confusion around it all absolutely comes in waves and still baffles me to this day. As he “gets older” I’m more longing to know what he would have been like, and can’t really relate the Leo that should be to the Leo that we knew – I think that makes me miss him more. The trauma of it all has absolutely been a particular challenge this year, and I think the distance allows me to not explain away or “Make okay” things that I did in the early days, and I am left questioning and repeating it all so much more.

Jess blogs at The Legacy of Leo and runs a twitter chat every Tuesday 8pm til 9pm via the #Babylosshour 

Shayen’s Mum

At the beginning, I honestly didn’t know how I was going to get to the next day. I didn’t see how life could carry on. Feeling suffocated by grief was an awful feeling. It doesn’t just go away. Like one day you don’t just wake up and feel better… it’s with you all the time. You just learn how to cope with it. People say that you become a different person and I think this it true. The person I was before Shayen has gone. I’m a new me because you cannot just get on with life in the sane way after a loss like this. Everything changes.

And finding ways to cope was key for me. Meditation, Reiki, aromatherapy, yoga… all of these things became my coping mechanism.

Shayen’s parents recently featured with me on Channel 5’s “Stillbirth – Still a taboo”    

 

*Thank you so much to all of these brave parents for sharing their beautiful babies, their personal stories and emotions, and for their continued efforts to make a change for the future! I am so grateful for each of you and incredibly humbled by your journeys and part in ours! 

If you are affected by anything in this post please contact do me or your local Sands / Sands.co.uk – there are many sources of help and support from people who know how you feel following the loss of a baby.