Her daughter’s smile is the most precious thing in the world to Corinna Brook, but even as she tickles her tiny tot to get a laugh, the proud mum can’t raise a grin herself. The Christchurch primary school teacher, 40, was born with facial paralysis, which means she can’t turn up the corners of her mouth. “Maslin has the most gorgeous smile, which brings me so much happiness,” she says, “but it also makes me sad to think of my own parents holding me as their first-born baby and how they never got to experience the joy of seeing me smile.”
Corinna has two extremely rare conditions, Möbius syndrome, in which sufferers are born with complete facial paralysis and cannot form facial expressions, and craniometaphyseal dysplasia, where bones thicken in the skull, compressing the nerves of the head and neck, often leading to paralysis, blindness and/or deafness.
Apart from one girl with Möbius, Corinna – who is deaf and wears two hearing aids – doesn’t know of anyone else in New Zealand with these conditions. She tells, “They say it’s a mutated gene that started with me and I have a 50% chance of passing it on to my children.”
Growing up in Waimate, between Timaru and Oamaru, Corinna was painfully shy and teased about how she looked. She recalls, “I hated large groups and always felt awkward with people I didn’t know very well. I would never say anything to anyone in case they noticed.
“I probably look grumpy or sad most of the time, even though I’m not,” she continues, noting that her face doesn’t change depending on her emotion. “Some people make silly remarks about it – adults more so than kids. I remember a colleague asking me why my face was so lopsided. And one day in the supermarket, a stranger told me to be careful because the wind might change on me!”
When Corinna met her husband Malcolm, a 45-year-old digger driver, he shared her dream of having children. But rather than let nature take its course, the couple went through IVF so they could have their embryos genetically tested to ensure their baby was free of Corinna’s conditions.“We didn’t know if our baby might be born with a worse case,” she explains. “People who have it worse than me require regular skull surgeries, are born deaf or blind, and can have trouble breathing, eating and moving their eyes.”
With new advances in science, embryos can be tested for genetic conditions, but Corinna and Malcolm had a three-year wait to have the testing publicly funded. During the IVF process, she had 13 eggs removed, of which six were successfully fertilised but only three survived. Tests revealed that two of the embryos were affected with her disability, so it left only one embryo to use. The couple had the embryo frozen until they got married in June 2014. Corinna tells, “We had the ceremony at night-time because I’d always dreamed of getting married surrounded by fairy lights. Malcolm and I banned guests from taking photos – I didn’t want anyone to tell me to smile during my special day and I didn’t want to feel anxious about how I’d look in everyone’s photos. I just wanted to enjoy the moment of getting married and it was a brilliant day.”
A month after their fairytale wedding, Corinna and her new husband had the embryo thawed and transferred. “Ten days later, I got a call to say I was pregnant!” she says. “We were over the moon. But it felt like ages before I got to meet my baby. When they put her on my chest, it was the most amazing experience.” They named their beautiful daughter after Corinna’s beloved late grandmother. “Her maiden name was Maslin.
She used to tell me that my eyes would tell stories and I always thought it was such a beautiful thing to say. I was extremely close to my nana.”Now 11 months old, Maslin is a happy baby with a gorgeous shock of white blonde hair – and an ever-present grin. “She started smiling at four weeks,” says Corinna proudly. “Malcolm is just an amazing dad. He can’t wait to come home from work and he goes straight to Maslin for a cuddle.”Doting mum Corinna is determined to teach her daughter the value of self-confidence. She explains, “I’ve learnt not to worry so much about what others think and be proud of who I am. "I really believe my disabilities have made me the person I am today. I’m a teacher and I have a responsibility to model positive self-esteem to my kids. Now that I have a daughter, it is even more important.”
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