When her baby was only three weeks old, D’Arcy Vigors’s newborn bubble was burst by a terrifying diagnosis. Here, she tells Eimear O’Hagan how they learned to embrace an uncertain future.
Twelve years ago, D’Arcy Vigors was in a ‘blissful newborn bubble’, getting to know her three-week old son Louis, when she and her husband Ollie noticed that their baby’s eyes were moving rapidly, as if they were wobbling.
After an uneventful pregnancy and birth, they weren’t immediately worried, but did take Louis to the doctor. ‘We were sleep-deprived first-time parents and had no idea if this was normal or not,’ remembers D’Arcy, now 48.
The GP diagnosed a condition called nystagmus, a constant involuntary movement of the eye, and referred Louis to London’s Great Ormond Street Hospital (GOSH) for more tests. ‘I’m not someone who panics easily and really thought the doctors at GOSH would say it was something he’d grow out of in time.’
Instead, they explained that nystagmus can be a symptom of other more serious conditions and that Louis would need to have a CT scan to rule out the presence of a brain tumour. ‘I felt like I’d been punched in the gut,’ says D’Arcy. ‘Suddenly it all felt very scary. Our perfect little world had been turned upside down.
‘I still find it hard to think about that day without getting emotional. Handing Louis over to a nurse to be taken for a general anaesthetic and scan when he was just six weeks old was so difficult. It felt like for ever before he was carried back, roaring for a feed.’
When the scan results came back clear, there was huge relief. But there was still uncertainty about what was causing the problems with Louis’s sight. ‘The eye movements continued and we’d started to notice that he wasn’t focusing, especially in rooms with bright lighting, or when he was outside in his pram; he just gazed into the distance,’ says D’Arcy. ‘In a dimly lit environment, he engaged a bit more, but it was obvious to us he wasn’t seeing as he should.’
Over the next few months, more tests were performed on Louis at GOSH, with his parents also undergoing genetic testing in a bid to reach a diagnosis. ‘No one expects to spend the first year of motherhood in and out of hospital with their child. I still did all the baby classes and took Louis for walks around the local park in between his outpatient appointments. I was determined to try to keep things as normal as possible.’
But there was always that uncertainty casting a shadow. What was wrong? And what did it mean for Louis’s future? ‘The not knowing was emotionally draining. We were pragmatic enough to realise that, whatever happened, we were facing raising a child with a sight condition; we just had no idea how severe it was going to be.’
Finally, when Louis was one year old, he was diagnosed with the incurable condition achromatopsia, one of its symptoms being nystagmus. This rare, hereditary disorder affects around one in 30,000 to 40,000 people. It causes sensitivity to light, which reduces sight, and partial or total colour blindness and blurred vision.
‘The phrase “blinded by the light” is quite appropriate,’ says D’Arcy. ‘We were told Louis’s eyes are missing the components – called “cones” – which filter light. Without them his vision would always be very poor, particularly in bright environments.
‘I thought that, after so long, we would be prepared when he was diagnosed, but it still came as a huge shock.’ There was sadness, too. ‘Like many parents in our situation, Ollie and I felt a sense of mourning about what we believed Louis wouldn’t be able to do. We talked late into the night about our fears: how would he ever live independently, have a career or travel? We weren’t sad for us, but for him, assuming that this condition would shut so many doors.’
Still, D’Arcy and Ollie quickly rallied. ‘We couldn’t let ourselves go to a place of anger or resentment, asking why it had to be our child. We had to lead by example and not only accept this diagnosis but appreciate every positive we could for Louis, especially the fact he had at least some sight.’
Louis was prescribed tinted glasses to help his eyes filter light, but apart from regular check-ups at GOSH, D’Arcy and Ollie were left to forge as normal a life as possible for him.
‘He relied on voices and noises, unless something was very close to him, but he knew no different and that made things easier because he had nothing to compare his limited sight to. He hit all his developmental milestones and played like any other little boy,’ says D’Arcy.
There were still reminders of his vulnerability. ‘Like the time I left him standing by my car when he was two to put money in a parking meter just yards away. He stuck out his hand to reach for the nearest adult walking past, because he couldn’t see that it wasn’t me. That was terrifying for me.’
But those rare, heart-stopping moments aside – and what parent of young children hasn’t suffered them? – D’Arcy was determined to foster a can-do attitude in Louis. ‘I realised my greatest responsibility to Louis as his mother was to raise him to feel as capable as anyone else and to believe his condition makes him special, not different.’
When Louis was two, D’Arcy gave birth to his brother Leo. Because Louis’s condition is genetic – meaning D’Arcy and Ollie are both carriers of a recessive gene – they were told there was a 25 per cent chance of having another child with achromatopsia.
‘That’s quite high odds, but not for a second did we consider not having another baby,’ says D’Arcy. ‘Some people were surprised; they didn’t understand why we would take the chance of having two children with sight problems. But when you live with something day-to-day, you know you can not only cope, but that it doesn’t detract in any way from your love for your child.’
Louis is now 12 and Leo ten. The brothers have a very close bond. Leo was born with normal vision ‘but in the same way Louis knows no different, for Leo it’s just the norm that Louis can’t see very well,’ says D’Arcy.
Like most boys his age, Louis is always on the go: swimming with his school team, jogging with his father – throw in drum practice, football and, of course, his school work, and his is a packed schedule. He attends a mainstream school, using enlarged texts and an iPad to study, and his favourite subjects are art, along with design and technology. ‘He’s learned to play the drums by ear, and in the pool it doesn’t matter what he can’t see – it’s all down to stamina and strength,’ says D’Arcy. ‘He can’t play sports such as rugby or cricket at school, but I got him a special football with a bell inside and he and his friends use it for a kick about.
‘Louis and I both love art and often visit galleries together. We laugh at how many alarms he’s set off standing too close to paintings! I photograph them on his iPad so he can enlarge the images when we get home and study them more closely.’
Louis can see up to five feet in front of him, depending on the light – though even then with very blurred vision. ‘Recently I asked him, “If your eyes could be fixed, would you want that?” His reply filled my heart with pride: “No, this is who I am”.’
Last summer Louis reached a major milestone when he began learning to use a white cane. ‘A lovely lady from the Royal National Institute of Blind People (RNIB) came to our home to give him some lessons. Seeing him use it for the first time, I felt very emotional,’ says D’Arcy. ‘She warned me that some children feel embarrassed by a cane, and that self-consciousness affects their ability to learn to use it. But Louis was so enthusiastic; he realises it holds the key to his future independence.’
However, the first time D’Arcy and Louis went out for a walk with the cane, she was taken aback by other people’s reactions. ‘There I was, beaming with pride, until I saw the pitying glances from passers-by. I wanted to stop them and say, “Don’t be sad, this is amazing!”
‘I hold up my hands and admit I was probably guilty in the past of having preconceptions of visually impaired people; we’re so conditioned to think of visual impairment as excluding people from “normal” experiences. Before, I would have felt sorry for a child like Louis, believing his life must be so hard. Now I know different.’
Still mastering his cane, Louis would also like a guide dog in the future. ‘We want anything that’s going to give him the maximum freedom,’ says D’Arcy. ‘It’s scary for me to think of him going out into the world without me, but with his teenage years nearly here I know that time is approaching.
‘I have to keep reminding myself that from the moment he was diagnosed, all I’ve wanted for him is a happy, fulfilling and, most importantly, independent life. Now it’s time to let him live it.’
D’arcy and Louis are fundraising for GOSH’s new Sight and Sound centre, supported by Premier Inn, due to open in 2020. To make a donation go to gosh.org/sightandsound