From the heart: Trolls won’t win… My daughter’s a fighter – one mum’s disbelief at the online hate for her disabled child
When her little girl was born with severe deformities, Natalie Weaver, 37, wasn’t prepared for the reaction of others
Watching as the midwife handed my silent newborn to the doctor, my heart thumped frantically. ‘Is she OK?’ I called out, but nobody answered. No-one would even look at me and I couldn’t help feeling I was being avoided.
Finally, after several agonising seconds, my daughter’s cry filled the room. But as the doctor carried her over to me, her expression seemed strange – almost as if she was scared or shocked. It wasn’t the kind of look a newborn baby usually inspires, but it’s one I would come to recognise in most people who met my daughter Sophia.
I found out I was expecting Sophia in February 2008, just four months after my husband Mark, 48, and I got married. ‘I can’t wait to decorate her nursery with butterflies and flowers,’ I said to Mark when we found out we were having a girl.
Anxious wait
Only at 34 weeks, when I went for a 3D scan, the sonographer disappeared to find a doctor. Mark hadn’t been able to make the appointment because of work and although I felt confident going alone, now my whole body was shaking.
‘Natalie, we think there’s something wrong with your baby’s face,’ the doctor said, after assessing the monitor. ‘We’ll need to refer you to a specialist, today.’
I called Mark immediately, and within half an hour he was driving me to another hospital. There, after being assessed again, a doctor broke the news that would change my life forever, ‘Your baby has severe deformities in her face, hands and feet,’ he said.
‘We’re not sure why, and we can’t be certain she’ll survive the birth.’
Immediately, I felt my eyes sting with hot, uncontrollable tears, as Mark clasped my hand.
Seeing the scan, it was clear our baby’s chin was recessed and her fingers were splayed awkwardly. But despite our devastation, there was no doubt in our minds that we would continue with the pregnancy.
We muddled through the next four weeks, but inside I felt numb and terrified at the same time. And when my baby girl arrived on 20 October 2008, silent and motionless, I thought my worst fears were confirmed. Only then, her little lungs crackled to life, and she let out an almighty scream.
When the nurse placed her on my chest, I marvelled at the two big, brown eyes gazing back at me – until my focus widened. Then I realised my daughter’s gums were exposed, because her lips and chin were missing. There was no skin underneath her eyes either. The nurse lifted my baby away so she could be taken to the neonatal intensive care unit. For the next few hours, I sat in shock. The deformities were more severe than anybody anticipated. I was nervous about seeing my baby again.
But as soon as the nurse scooped Sophia out of her incubator and into my arms, I broke down. ‘This is my baby,’ I thought. ‘And I will do what it takes to protect her.’ Follow-up scans revealed Sophia’s deformities were affecting her breathing and eating. She faced a lifetime of surgeries, the first of which came at nine days old when she had a feeding tube inserted into her belly. But against the odds, a month later she could go home.
‘My daughter’s lips and chin were missing’
Public rejection
But while family and friends adored her, strangers struggled to see past her appearance. Strolling through the park
with Sophia in her pram, everybody stared. Two teenage girls even screamed once as they walked passed. Seeing my girl being rejected hurt and for years, I became very protective of Sophia, hardly taking her out. As Sophia’s fulltime carer, I did everything I could to help develop my daughter, even getting her to eat normally, talk and use her hands to play with toys by the time she was one.
But just after my son Alex was born in 2010, Sophia started having seizures. Her progress completely halted, and just before she turned three years old, she was diagnosed with an immune deficiency. Within a few months, we needed 24-hour help from carers to ensure Sophia didn’t choke or hurt herself during a seizure. And yet, in spite of her difficulties, Sophia became a loving toddler, whose eyes lit up every time she saw her baby brother crawl into the room. Her diagnosis didn’t fully explain why she was regressing though, and for the next two years Sophia underwent a number of tests, until finally in 2013 she was diagnosed with a rare brain development disorder called Rett syndrome. It meant, on top of her deformities, she’d never be able to walk, talk or swallow properly again.
Fighting prejudice
‘She’ll never live an independent life,’ I cried to Mark, devastated. ‘As long as she knows she’s loved, that’s all that matters,’ he said. Still, it hurt to know my daughter would never go to university, marry or have children. A few months later, our third child, Lyla, was born, and seeing how protective Sophia was of her baby sister, I knew I needed to celebrate my wonderful family, not hide them away. So I posted pictures of my family on social media, and talked openly about our lives. I wanted to support disabled children’s rights to healthcare so I was honest about the surgeries my daughter needed, and the round-the-clock care she received. But in doing so, I opened us up to a lot of negativity – with online trolls messaging me to say I should have my daughter euthanised and that it was cruel to keep her alive. It was such a shock but I learned to ignore their vile comments, making sure Sophia never saw what they wrote either. Until November 2017, when I received a particularly terrible tweet. Somebody had stolen a photo of Sophia from my account, and attached it to a message advocating for coerced abortions of disabled babies. I was sickened, and contacted Twitter to remove it. But when they responded to say they would investigate the comment, I was infuriated. It was clearly offensive. Why wouldn’t they just take it down? By the time they did in January 2018, I’d been bombarded with thousands of hostile messages. I realised the prejudice against people with disabilities was more deep-rooted than I’d ever imagined. So I’ve become a vociferous supporter of disability rights, and even lobbied Twitter to alter its reporting tool so there was a category for hateful posts against people with disabilities – which was successful. It’s easy for trolls to pass judgement on Sophia because they don’t know her. They don’t see the girl who rolls her eyes with embarrassment when her mum sings to the radio, or who rarely watches TV because she’d much rather listen to conversations. That is the real Sophia. That is the girl I want people to recognise.