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Facing The Truth In Baby Loss Awareness Week

by Kyra Chambers 7 months ago in Family
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Dedicated to my beautiful friends in Friends After Loss. I couldn't have walked the darkness without you. Our stars shine on.

Copyright: The Starling - Netflix

Time.

Funny thing that timey-wimey stuff. Sometimes the months rush past in glorious technicolour that brings us to exclaim 'Halloween? How is it Autumn already? How the time flies.' Sometimes a minute can last a lifetime, it has to last a lifetime, like the last moment you hold your living child in your arms.

Thirteen years ago, I became part of a worldwide family bonded together through the grief of losing our children. One in four pregnancies end in grief, either during pregnancy or in the first 28 days after birth, known as neonatal death. It's a sobering statistic.

I was 23 when I became a bereaved parent. Looking back, I was so young, so lost. At the time my fiance (now husband) and I lived apart, my days were filled with work, my nights with drink and darkness as I sought any distraction from the numbness, sitting alone in my flat, unable to simply pick up a phone to reach out for help, frozen in grief.

It had been a whirlwind year. Discovering I was pregnant, the end of a relationship and the beginning of a new one. A relationship that endured more trial by fire in it's first year than many couples face in a lifetime. Unplanned, unexpected, I spent part of my pregnancy in counselling as I had been thrown for an absolute curve and I had already had mental health concerns for a few years. The absolute terror of telling my mother, my desperate relief with her acceptance. Trying to navigate so many new and different paths and still feeling like a child myself, nodding along and saying yes whilst inside screaming 'I'm not ready.'

On the 24th of September 2008, in 32 hours my life changed irrevocably.

St Michael's Hospital, Bristol, UK. 24/09/2008

I won't tell the detailed story of my Harry's death. This story isn't about apportioning blame. However, mistakes were made; some attributed to funding, some to lack of training; that did result in the death of my beautiful first son. Complications caused Harry to be born with Hypoxic Ischaemic Encephalopathy Level 3. He stood little chance of recovery and I had to make the decision to withdraw life support.

Some degree of responsibility was taken, but what do words and apologies change? The numbness changed to anger. Why him? Why not me? I lost my faith, I lost friends, I pushed my family to their limits as the rage I'd tried to keep a lid on for so long would no longer be denied. I wasn't just angry at the hospital, I was angry at myself. Survivor's guilt is a terrible thing to live with and it eats at you as much as any cancer. A year and twenty-four days after Harry's death, we were blessed with our rainbow daughter - rainbow children are the children born to parents after a loss, the hope after the storm. Two years later, our shiny son completed our family.

Credit: Edshare

When my daughter was five years old, my mental health reached its lowest point. I was on a strong dose of anti-depressants but the feelings wouldn't leave. I spent months acting like I was fine whilst spending wildly money we didn't have just to feel something, because every time I did let myself feel something, I wanted to die. I spent days in recrimination, part of me a back seat driver in my head, watching all the fires and being unable to stop even a single one, feeling unrelenting shame at what I was doing but still being unable to stop. Things came to a head, and I faced an ultimatum of either getting help or losing my marriage and family.

https://www.prevent-suicide.org.uk/find-help-now/stay-alive-app/

I finally took action one day when I was sat on the sofa, watching the children play, and occasionally looking at Harry's picture on the wall. I couldn't decide who I wanted to be with more. The children in front of me, or my child in the wind. Being torn between them was killing me. I knew this was the last chance. I reached out once more to the GP, and instead of saying 'I'm fine' or 'I'm not sleeping', I was honest. I told him how scared I was that in six weeks I'd be six feet under because I couldn't fight it anymore. I was so tired. There was nothing left in me.

I was sent for more assessments and swiftly accepted into the care of the Community Mental Health Team, without whom I wouldn't be here writing this today. I am not ashamed to say I have been suicidal and there will be times in the future when it will haunt me again. Talking is the most important thing to get you through the moments when you're drowning on dry land. Sometimes a stranger, sometimes a friend, it doesn't matter who as long as you talk. Talking is progress, movement forward.

It's holding it in that holds you back.

I found the greatest solace with a small group of women who originally started a message board on Babycentre named Friends After Loss. For a decade now they have walked by my side, shared my triumphs, my darkest moments with no judgement, only love. You will never meet anyone stronger than someone who has stared into the abyss and walked away.

I'm still a work in progress, I always will be. Nothing can ever take away the depth of loss that comes with losing a child. You cannot explain it, but if you know, you know, and it's why many bereaved families often join together in support. This week is International Baby Loss Awareness Week. Tomorrow will be the 13th time I have lit a candle in memorium for Harry and all children lost as part of the #WaveofLight2021, an international movement that starts at 7 pm on 15th October, sweeping the world from Australia onwards in a glow of love and loss and hope.

Poignantly, this year Netflix released a film called The Starling which deals with the subject of baby loss. It was released worldwide on Harry's birthday but it was only last night I finally bought myself to watch it. I won't share too many details, to me it was one of the most accurate portrayals of life after a loss I've seen, and despite being a mother, it was Jack who I really felt a kinship with. His speech in therapy ripped the words from my own heart and soul.

Watching this film last night made me realise that whilst I have come so far, I still have a long way to go. There are changes happening in my life that bring this history back into stark relief. Twelve years ago I moved 120 miles away from Harry's place of birth, and current social situations mean we may have to move back and leave the place I have sought solace in for so many years. I left in crisis in my mid 2os and I don't know how to be the person I was before this loss because I can't be.

But with facing fears and unexpected epiphanies at 2 am, there is a choice. You cannot exist only in the light, or only in the darkness. There has to be give and take within yourself as much as in those around you. Live the days that were stolen from your child and give them purpose. That purpose is your life, your breath.

You've already made the greatest of sacrifices, don't let anything else be taken from you.

Harry Alexander 24/09/2008- 25/09/2008. Beloved.

Family

About the author

Kyra Chambers

Autistic (PDA) & Neurodivergent writer.

Vocal Plus Fiction Awards Finalist.

Find my full article list at The Chambers Chronicles

Tips/Subs appreciated but never expected.

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  • Liz Semple8 days ago

    I’ve just read this beautiful piece and it resonates so strongly with me too. We also lost our baby Benjie at 3 days old in Bristol in Southmead hospital. It was 20 years ago now and we also have our firstborn, Michael who is 22 and our youngest son, Jamie who is almost 19. There was no fault, he’d had a brain aneurysm in the womb which we found out later was extremely rare. We also had to make the decision to stop life support but his brain was so damaged with fluid build up that he had absolutely no chance and had never even opened his eyes. I’ve never heard the term Rainbow babies, but we have had our son who is almost 19. I also had had mental health issues as was diagnosed with bipolar 6 years previously and had had been on Lithium for 4 years and had had to take a year coming off it to have our first son. All was well and I was managing my mental health with coping strategies but was diagnosed with an under active Thyroid, which I understand is closely related. It became overactive after losing Benjie. Looking back to those days, I had no idea how devastating losing such a tiny 3 day old baby would be. Similar to you, our lives changed forever. The grief was like wading through treacle every day. I had 3 months of maternity leave but decided to go back to my part-time work as an IT Analyst so I had something else to focus on. I started on just 12 hrs/week as that’s all I had of nursery but was able to increase that to 20 hrs/week and was managing a project really effectively but as the only women in a team of 10 men. When I became pregnant, deliberately at a different time of year, I couldn’t tell anyone at work even friends. I thought they’d think that that would make everything OK. I was like a pressure cooker and started seeing as a counsellor, because I was really struggling. My male boss asked me outright at 4 months. I couldn’t lie and he was also a good friend too, as we’d worked on a project together before I had children. The whole pregnancy was an emotional roller-coaster. But I still managed that project until I was 8.5 months pregnant then had to hand it over to a colleague, who did actually get all the credit for it. But I didn’t care, as then we had our beautiful new baby son, Jamie. Unfortunately I was also plunged into post-natal depression which took the form of bipolar once again. I was hardly sleeping as I was hyper-vigilant to make sure he was alright. I didn’t want any medication as I also wanted to breastfeed and if I wanted anything to help me sleep, I couldn’t do that. I was lucky enough to have a great GP, who booked me weekly talking appointments. I was again walking through treacle, just about dragging myself to all Michael’s activities and taking him to nursery, but with hardly any joy. By then, I was also entitled to a year of maternity leave. After 6 months of being able to breast-feeding, along with my GP, we decided I needed some medication to help me sleep. I was sad I had to stop but it helped me get on a more even keel. I was given the chance for 1/2 day per week of childcare and my GP said to find something inspiring. I found a jazz dance class and that 1/2 day became my lifeline to find my way back to being myself. When Jamie was a year old my maternity leave was over and I’d just enjoying time with him, as he was such a giggler and although Michael acted up he was also good company at 3.5 but then I had to return to work 20 hrs/week. I felt I wasn’t doing anything well and Michael was just about to start school but there was 6 weeks of 1/2 days and my new boss wanted me to get a childminder to pick him up. I couldn’t do it and resigned so I could be at home with both of them and around as my priorities had completely changed and them having a happy childhood, mattered far more to me. I really enjoyed those 3 years, being around for school times and taking Jamie to playgroups and other activities. We all had a good time together and Michael thrived at primary school. Jamie with a May birthday was just 4 when he started at school and his older brother looked out for him in our tiny village school. They both adored their Dad and we would meet up regularly with Bristol friends for Sunday swimming and take turns making a Sunday roast. Once Jamie started at school I luckily found a part-time accountancy job which was only 15 mins drive away from home and their school. It felt like I’d finally found a good balance. But throughout those years, grief would floor me on anniversaries or at unexpected times. We would have the same friends staying over New Year’s Eve, as unfortunately New Year’s Day was the date we had lost Benjie. They had been there taking care of Michael at 2, for 5 days, whilst we had been in hospital. They helped us get through yet another anniversary and we had our own way with a special meal and all of us staying in our house together. I now look back 20 year’s later, we now have 2 strapping boys, who we are very proud of. Michael is just about to graduate from University. Jamie after having to navigate college in lockdown, but managing to hang in there. Then a year of paid working, is about to go to University. I’ve also found another good part-time finance job where I can use my IT skills. I’ve also been able to pass on my self-care mental health tips, when many people and their kids have struggled in lockdown. So after many tough years, finally we’re all in a good place and contemplating an empty nest. But so proud of both boys settled as Michael also was offered a job with his placement company. We have all come through together, more empathetic and grateful for our lives.

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