Touching Lives - April 2016
A better night’s sleep for children like Jack
It took more than two years to diagnose Jack with a breathing disorder that children with Down syndrome are vulnerable to. Research funded by Action could improve routine screening so that in future children get the treatment they need sooner.
Jack, pictured below, was just nine weeks old when his parents first noticed his breathing was noisy and he snored. Little did they know these were the first signs of a serious breathing disorder called obstructive sleep apnoea (OSA).
Over the next two years Jack was in and out of hospital. “It was a very hard time for us as a family and lack of sleep for all of us made for a very unhappy household,” recalls his mum, Jo.
Children with this disorder stop breathing for a few seconds at a time during sleep before rapidly gulping for air and starting to breathe again. This disturbs their sleep and causes oxygen levels in the blood to drop.
Like Jack, children with Down syndrome are more likely than others to suffer from this. It can lead to problems with growth, learning and behaviour, adding to the additional challenges already faced by these children. It can also put extra strain on their hearts.
The condition can be treated but few children are currently screened for it. Research funded by Action – part of the largest ever study of OSA in young children with Down syndrome – should change this.
In 2012 we awarded almost £200,000 to a team led by sleep specialist Dr Catherine Hill at the University of Southampton. They wanted to see if a simple, affordable home screening test – using a small device called a pulse oximeter, attached to a child’s toe – could accurately identify children with OSA.
The results were positive and showed that a home-based screening programme could be viable. This could ultimately see more children being tested, diagnosed and treated sooner.
This would mean a lot to parents.
“Better screening would have saved us having to go through a really scary time, which I wouldn’t wish anyone else to go through,” says Jo.
Thanks to the Garfield Weston Foundation for their support of this project.