Scots baby's rare chronic condition dismissed by doctors as 'nappy rash'

Jade Aitken's world was turned upside down when she was told baby Louie needed urgent critical care for what was first suspected by doctors as nappy rash.

A Scots mum has revealed how her newborn's suspected nappy rash turned out to be rare condition which needed immediate critical care.

When Jade Aitken welcomed baby Louie Lynas into the world at St John's Hospital in Livingston, West Lothian, the 25-year-old pictured the joyful memories ahead.

Instead, she faced 10 months of uncertainty, worry, and a battle for answers as her son struggled with his health from birth.

Louie was incorrectly diagnosed by doctors has just having nappy rash, when he was actually suffering from a rare condition called imperforate anus, also known as an anorectal malformation (ARM) - which is a birth defect where the anus is either missing or blocked, preventing normal bowel movements.

The baby boy's inability to pass stools continued unresolved for 10 challenging months. It wasn’t until December 2024, after a distressing visit to A&E, when scans revealed Louie was severely impacted with chronic constipation.

The exact cause remained a mystery until his condition suddenly deteriorated, prompting an emergency ambulance transfer to Edinburgh's Royal Hospital for Children & Young People.

There, Louie received a diagnosis: a rare condition in which a baby is born without a functioning anus. Unusually, Louie's case was even rarer; his condition required immediate critical care, thrusting the family into an overwhelming, unfamiliar world.

In this difficult moment, a stroke of comfort came when a family friend became Louie's nurse there. She introduced the family to Ronald McDonald House Edinburgh, situated inside the hospital.

“When I first heard about Ronald McDonald House, I asked the nurse ‘Whereabout is it? How far away?’ and she simply said, ‘It's on the third floor.’ I couldn't believe it,” said Jade.

Ronald McDonald House Charities UK is an independent Charity provides free ‘home away from home’ accommodation to keep families together, close to their children in hospital.

Last year, the Edinburgh House accommodated 577 who stayed for an average of 13 nights. It has communal areas such as lounges, kitchens, laundry facilities and a playroom, and every bedroom has a telephone directly linked to the children’s wards.

Having a place to stay within seconds of their son’s bedside was a huge relief. One night, Louie's father was stuck for two-and-a-half hours, highlighting the critical need for proximity during emergencies.

“Without Ronald McDonald House, we were ready to sleep in chairs or cars just to stay close,” recalls Jade.

During their stay, Ronald McDonald House provided invaluable comfort. “We couldn't believe there was so much under one roof. Kitchen, washroom facilities — it felt like someone understood exactly what we needed.”

Against the odds, Louie's recovery defied expectations. Despite initially preparing for a four-week hospital stay, Louie was well enough to leave after just ten days. Learning quickly to manage his stoma bag, a daunting task even for adults, the family was allowed home sooner than anticipated.

Jade said: “Even though we were offered a trial night at Ronald McDonald House to see how he managed, his resilience amazed us.”

Moved by their experience, Jade decided to give back. Jokingly challenged by Louie's father to do a skydive, she turned humour into heartfelt action.

Launching a fundraising page, she set an initial goal of £500, which was quickly smashed. Support flooded in from family, friends, and former colleagues, raising over £5,000.

The fundraising speed was unprecedented, catching the eye of Ronald McDonald House’s community fundraiser, Jane Powell, who suggested they could sponsor a room in honour of Louie's journey.

Jane said: “Jade's incredible courage and generosity blow us away. Her skydive and extraordinary fundraising efforts mean families facing some of their hardest moments will have comfort and support when it matters most.

“Fundraisers like Jade are the heartbeat of our charity, enabling us to continue providing a free ‘home away from home’ for families across Scotland.”

With the skydive rapidly approaching, Jade admits she's both excited and nervous. She has drawn courage from previous fundraising exploits, having once bravely completed a bungee jump.

“I remember standing at the edge of a bungee jump years ago, hesitant, and I jumped anyway. This time, I’ll have someone strapped to me, thank goodness,” she joked. “But every donation reminds me why I'm doing this: to help families facing challenges like ours. Ronald McDonald House was there for us when we needed them most.”

With another surgery ahead, the family knows their journey isn’t over yet. But having experienced first-hand the impact of a Ronald McDonald House, Jade passionately advocates for awareness: “If you ever have the chance to stay at a Ronald McDonald House, take it. It means everything when your child needs you most.”

To support Jade’s skydive and help Ronald McDonald House Charities UK continue supporting families, visit her fundraising page: www.justgiving.com/page/jade-aitken-1.

To find out more about Ronald McDonald House Charities UK, visit www.rmhc.org.uk.