Caroline and Ayla
"The hospice truly is a lifeline." When Ayla was diagnosed with a rare genetic condition shortly after she was born, she was given a life expectancy of just a few months. Despite this Ayla, who lives with her mother Caroline Johnston in Clackmannanshire, Scotland, has beaten all the odds – she is now 8 and a half years old.
Ayla (pronounced Isla), has Edwards’ Syndrome, also known as trisomy 18. The condition causes her to have seizures, skeletal issues, gastrointestinal problems, cognitive delay and breathing problems due to congenital lung abnormalities.
Living against the odds
CHAS (Children’s Hospices Across Scotland) has supported Ayla and her family since she was born in 2011. Children with Edwards’ Syndrome usually die before or shortly after birth, with very few reaching their first birthday.
This means Ayla is something of a medical miracle, with Caroline and Ayla’s dad Kerem counting every single day of their little girl’s life as a precious milestone.
Caroline and Kerem credit their daughter’s incredible journey to the team at Rachel House in Kinross, where Ayla went for respite two nights every month after her birth. Up until the pandemic she was going for three to four nights every three months.
The visits have led Ayla to form very close bonds with the nurses and staff, and she particularly loves taking part in arts and crafts sessions. "She also absolutely loves the sensory room, going in the Jacuzzi, and going out for walks around the beautiful grounds," Caroline says.
"Ayla is quite sassy and loves a bit of nonsense," she adds, "but she’s also really tactile and affectionate. The staff all know her personality so well. She generally just loves all the attention, enjoying nothing better than sitting on your knee, being read a story."
Keeping in touch
Sadly, as a result of the coronavirus crisis, Ayla can’t attend Rachel House for respite at the moment so she is ‘shielding’ at home instead.
Thankfully both Caroline and Ayla can still be in close contact with everyone they hold so dear at the hospice thanks to CHAS’s virtual children’s hospice. This online initiative takes fun activities such as story-telling and clown doctor sessions into children’s homes.
As part of the service, parents also have access to 24-hour nursing, medical and pharmacy advice by phone and video, bereavement support, money and benefits help, and practical advice about the ongoing coronavirus crisis.
"It is a fantastic idea as Ayla really misses her respite visits to Rachel House, but this lets her stay in touch with the activities team and feel part of all the usual hospice goings-on," Caroline says. "It’s also really reassuring to know that any time I need CHAS they are just a phone call away, and I can access vital clinical advice any time, night or day.
"I’ve phoned at midnight and during the day, and they’re always there. If I’m lying awake during the night worrying about something to do with Ayla and need to chat to someone, I know I can phone CHAS."
"That truly is a lifeline, especially at the moment as I am extremely worried about coronavirus, given that Ayla already suffers from breathing difficulties and has a weakened immune system. When she gets a cold she can become seriously ill and has previously had to be admitted to hospital where she was put on a ventilator for three weeks.
"We do have suction and oxygen at home if her breathing is impacted so I can treat her myself to a certain extent, but if those measures were not working she’d have to be taken into hospital, which is a frightening concept given the current situation.
An emotional lifeline
Caroline explains that because of Ayla’s condition, they’ve been germ-conscious since long before the pandemic.
"Because Ayla is so susceptible to catching colds we have actually long been doing things that others are doing now for the first time, like coughing into our elbows and constantly washing our hands. Our anxiety levels about all these things are definitely heightened as a result of coronavirus."
Additionally, she says that the hardest part of shielding is not being able to see friends and family. "We’re definitely missing having that human interaction and we are missing Kerem (who is staying in Turkey at the moment) so it is just me and Ayla at home.
"I have a sister but she doesn’t live nearby, and my best friend is really supportive but she is a keyworker so has her own stress being directly on the frontline."
However despite the daily challenges they continue to face, Caroline is determined to stay positive.
"It is a strange, stressful, worrying time but we have to take comfort in the knowledge that this will pass if we all do what we are being asked," she says. "Each day we are hearing about so many amazing acts of kindness between strangers and communities.
"I am also grateful to everyone who has been in touch checking in on us and offering to help in little ways such as leaving a loaf of bread on the doorstep. It is these small acts of kindness that will get us all through these challenging times."
"The emotional support I receive from CHAS is invaluable. I have made so many friends and confidantes there over the years and truly cherish those relationships."