We all experience deaths in our families. Grandparents, parents, these griefs come to us all, eventually. We accept that is how life is, and we move on. But thankfully nowadays, the death of a young child is something only a few parents have to endure. And when we who have experienced this in our own lives hear of the feelings expressed by the families of the victims of Lucy Letby, the grief resonates again.
For those whose children survived, but suffered life-changing brain damage, the pain of loss is no less. Medical advances ensure that children with profound physical and mental disabilities live on far beyond the time parents are told 'we can do no more'. And they are left, often with inadequate support from stretched social services, to make the most of the young lives blighted by the disabilities. And a magnificent job many do, despite the odds against them.
But their mourning continues. Because even those whose damaged children survived face every day the loss of what might have been, what should have been for their child. The children who survived Letby's ministrations will be eight years old now, they should have been going to the local school with their age mates, playing in the team, dancing in the school show. Instead, they suffer from cerebral palsy, blindness and other life-shortening afflictions. As each year passes, the typical childhood milestones which are missed will be sadly noted as the losses mount up.
My daughter Rachel died aged eight, having suffered from birth increasing debilitation caused by a metabolic disorder derived from a rogue set of genes. One vision I had for her lost future came after an incident in the play park. I had chosen a quiet time to go so that I could give her some time being pushed in the toddlers' swings. Her stumpy legs and uncoordinated motor control meant she could not sit on the normal swings, and her stunted growth made her not much larger than a three year old, despite her six years.
As we played happily, I became aware of a girl of around 12 sidling closer and closer, trying to disguise her slow almost predatory advance. But soon she was leaning on the swing upright just beside us, staring at Rachel quite blatantly. I ignored her, determined not to react. I waited for the usual wearying question: 'Is there something the matter with your baby?'. And I wondered how to explain to a 12-year-old the vagaries of fate that had brought Rachel to inherit the lethal gene combination her father and I – and clearly many of our ancestors – had escaped by sheer chance. But what she said so astounded me, I too turned to stare at Rachel in astonishment. 'Missus, see your baby – has she got on make-up, and eyeshadow?'.
The girl simply did not see Rachel's distorted features – her condition of Hurler Syndrome is not labelled 'gargoylism' for nothing. She saw only her naturally blonde hair – inherited through my mother. Her skin was tanned since we walked everywhere in the fresh air, with Rachel in the huge second hand Silver Cross pram to save the taxing hassle of managing on buses, or trying to squeeze her into a car seat. And suddenly I could see what a 'peach' complexion meant – the faint blush of rose pink under the tan, and a fine downy fuzz on her cheeks. Her eyebrows were black, as were her eyelashes, and the skin of her eyelids was so fine, the lids appeared pale blue from the blood vessels beneath. Actually, yes, when looked at objectively, looking past the distortions of her affliction – her colouring was beautiful – but completely natural – such as many women like me strived to look with our make-up, blushers, mascara, eyeshadow and bleaching hair rinses.
Parents of children who have debilitating afflictions mourn the child that would have been without the intervention of a cruel fate, whether through the vagaries of nature or a nurse's evil intent. I imagined Rachel as she might have been – even long after her early death. I fantasised that of course she would have been beautiful, and I would not have nagged her to study and work hard for a good career as I had done – I would have said 'Flaunt it my love, enjoy your natural beauty – have a ball'. As years went by, I imagined her as a sporty teenager, as a talented, popular lass, sought after by the best of the young men, later as a mother, with me as a proud grandmother.
Then one day I saw a mother and daughter enter a cafe where I sat. The mother looked a little like me, tall, slim, tastefully dressed – pale sage green outfit, cream blouse, expensive looking bag and matching shoes, gold jewellery and a hairstyle that had recently had the attentions of an expensive hairdresser. She was accompanied by her daughter who was around 15, and sturdy with puppy fat.
She wore Doc Martins and striped leggings that ringed up her chubby legs in black and white. On top of these she sported broderie anglaise knee length bloomers which were clearly too big, so she had rolled them round at the waist, but had to keep clutching and pulling at her bulky waistline to save disaster. Her several tops, hanging in uncoordinated layers, included a string vest. Her hair was caught in several random bunches around her head, each secured untidily with a brown elastic band. Every aspect of her dress and appearance seemed to be a calculated shout of rejection of her mother's well-groomed tastes and aspirations.
And sudden grief overwhelmed me, as I realised Rachel never had the chance to be the person she might have wanted to be. Not my imagined sweet, pert, happy beauty. She never had the chance to be herself. To rebel. To be bad. To be irritatingly awful. What would she have been like? The question stalks your mind throughout your life. It is a heartbreak that you never get to know that child. On programmes such as
Long Lost Families, when reunited after 50 years with the children they had to give away as babies, mothers almost always say 'there wasn't a day gone by when I did not think of you'. One parent in their impact statement in court yesterday said 'you have ruined our lives'. They know already their loss will be felt every day in the future.
For many years in cafes and restaurants or public places I could not bear to sit near any families with happy active little girls, and later near teenagers. Even later, I winced seeing middle-aged women with grown-up daughters pushing a go-cart. The loss of a child is lifelong heartache. You can never move on. To the parents involved, the legacy of Lucy Letby is beyond cruel.
Mary Simpson is Professor Emeritus of Classroom Learning at Edinburgh University
