Our beautiful Laura
Corio infant Laura Inglis has a rare brain malformation that affects just one in 100,000 newborns. But her parents are determined to give her the best life possible.
“You just learn to live in the moment, enjoy every moment you have with Laura and every smile and engagement you have, because when you catch it it’s beautiful.”
MEL and Jake Inglis don’t know if their baby daughter Laura will ever walk or talk, or how long she might live for, but they know one thing: “Loving her is so easy to do. She’s beautiful in every way,” Mel says. Laura was born in January. She weighed 6lb 10oz in the old scale, 3kg in the new.
She was 48.5cm long. Had 10 fingers, 10 toes, fed well and passed all her newborn tests.
She was perfect. Life was perfect.
But at three months Mel’s mother’s intuition and professional training as a nurse told her something was not quite right.
Laura wasn’t holding her head up, nor was she interested in toys.
Tests and scans were ordered.
Specialists asked lots of serious questions and avoided eye contact.
Slowly, Mel came to the dawning realisation the situation was more grave than she first suspected.
In May, not yet four months old, Laura was diagnosed with lissencephaly, a rare brain malformation that will affect every aspect of her development.
It was too early to say how seriously the condition would affect Laura, but the key message rocked Mel and Jake.
“Maybe she will learn to sit ... she most likely will be in a wheelchair, most likely won’t be able to talk,” they were told.
“The days afterwards were extremely difficult. It’s etched in our minds. We just were not ready for it,” says Jake, an electrician at Ford.
“There is grief, but Laura is still with us, and she is still smiling, so it is a grief for what she could have had.”
Four months on, Mel is learning to readjust her vision of motherhood.
Seeing other mums at the shopping centre or young children at her local netball club is, at times, difficult because it reminds her of the life she imagined for Laura. But she is determined to give her daughter the best chance at a fulfilling life.
“You just have to change the outlook that you thought you were going to have,” she says.
“You shift your goals. You think about your daughter, you think about how we can make her smile, and what we can do to make sure she’s not in pain.
“You just learn to live in the moment, enjoy every moment you have with Laura and every smile and engagement you have, because when you catch it it’s beautiful.”
Medicos have been unable to pinpoint why Laura was afflicted with lissencephaly.
Aside from forecasts that Laura will need 24-hour care, firm predictions about her future have not been forthcoming.
Life expectancy for a child with lissencephaly is said to range from 2-10 years, but Mel and Jake have spoken to families who tell them it’s possible to live into your 20s with the condition.