‘When my son was born with a rare facial condition, I was struck down with grief and unspoken guilt’

·4 min read
Charlie Beswick with Harry at birth and now
Charlie Beswick with Harry at birth and now

When people asked whether I had a preference about the gender of my twins, I replied “no, as long as they are healthy, I don’t mind”. I never expected that they wouldn’t be.

I was just 32 weeks pregnant when I went into spontaneous labour, only to discover that one of the twins was breach. Four hours after my emergency caesarean, the paediatrician came to tell me that twin one, Oliver, was fine. Instantly, I knew bad news was following. He explained that twin two, Harry, had been born with a rare craniofacial condition called Goldenhar syndrome. For Harry, this meant that he had been born with no eye or eye socket, an absent ear and nostril and a short undeveloped jaw all on his left-hand side. We were also told that he may have brain damage and never be able to walk.

I looked from the doctor to my fiancé like a person would look to a translator for help understanding a foreign language. I had looked after myself so well throughout the pregnancy that it was hard to digest the reality that, somehow, one of my babies was anything other than the picture of health I had expected.

I was consumed by guilt; convinced – despite the doctor’s reassurances – that I must have caused Harry's syndrome somehow and terrified that I would struggle to look at a baby with only half a face, let alone love him. I decided there and then that I had already failed as a mother in not providing my babies with the best possible start in life, and that became my destructive, internal narrative.

My fiancé and I married, and Harry was also diagnosed with autism. He slept for only a few hours a night, lived very happily in his own bubble and I had to acknowledge again that our lives, particularly the bond and experiences shared by my boys, would be taking a very different path to the one I had expected.

Charlie has written about her journey with the boys – the highs, lows, challenges and triumphs – in Our Altered Life
Charlie has written about her journey with the boys – the highs, lows, challenges and triumphs – in Our Altered Life

When they were four, I became a single parent as my marriage crumbled beneath the weight of unspoken guilt, sleep deprivation and undiagnosed post-natal depression. Later, I had to leave my full-time teaching role as the demands of being a full-time carer took their toll.

With space and time to reflect on a life I had never chosen or been prepared for, my mental health caught up with me and, at my lowest, my mum took me to the doctors to explain that her daughter needed saving from herself.

The antidepressants I had fought against taking helped to settle the fog in my mind and, over time, I spoke with different therapists and worked hard on challenging the self-critical narrative that had determined my view of the world.

I was able to recognise that, since my boys’ birth, I had been living with a grief, that didn’t look or sound like the traditional grief we understand, but was real, nonetheless. A grief for the mother I would never be, for the children I would never know, for the family life we would never experience. And, rather than seeing myself as a failure, I realised that I was simply human and that to grieve for the things we have lost is a valid part of coming to terms with an altered life and being able to move forward.

Oliver and Harry are now 16
Oliver and Harry are now 16

I collated years of diary entries, hospital reports, health visitor notes, local authority letters and wrote about my experience initially as a cathartic exercise but, after a few trusted friends read it, I was encouraged to publish my book in the hope that just one mother would read it and know she wasn’t alone in her feelings. Our Altered Life has been a best seller and I regularly get messages from mothers from around the world thanking me for writing what they are still too afraid to voice. I also share our journey – the highs, lows, challenges and triumphs – in a newsletter and on social media and the community that has grown around us is a truly wonderful one.

I am 42 now, living in North Staffordshire with my boys who are 16, my incredible partner of 10 years and his wonderful children. I still teach two days a week and, alongside that, I work with businesses who want to develop the resilience of their employees. And I support mums like me. The ones who feel broken and don’t yet realise how strong, capable, and brilliant they already are.

Today, I can look back on my journey with a love, pride and detached awareness that eluded me in the early months and years. It is my mission now to help other mothers realise that the lives we may never choose can be incredibly rewarding, loving and fulfilling ones; to have faith that even tales with a twist can have a happy ending.

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