CHAS saved my girl’s life ..I don’t have the words to express my gratitude
Mum hails the work of charity who played a big part in daughter’s world outside hospital
THOSE first tentative steps, running through the school gates in a shiny new uniform, walking down the aisle – there are many milestones for parents to look forward to in their children’s lives.
But for Caroline Johnstone, every day of her little girl’s life is a milestone – and a miracle.
Now six, Ayla was born with Edwards’ syndrome – otherwise known as trisomy 18 – a rare genetic condition that usually causes babies to die before or shortly after birth, with very few reaching their first birthday.
Caroline and her husband Kerem discovered that Ayla would suffer from Edwards’ syndrome when she was 17 weeks pregnant – and the couple now credit their daughter’s thriving life to the team at Children’s Hospices Across Scotland, better known as CHAS.
Caroline said: “I was devastated to discover that we may not be able to take our baby home. I knew about CHAS as a charity but really wasn’t sure what they were about and how they would affect us but we were invited to Rachel House in Kinross, one of CHAS’s two hospices in Scotland, so thought we would give it a try.
“We were discharged from hospital on Ayla’s three-week birthday and we went to Rachel House for a few days before going home.
“When we arrived, there was a lovely room set up with a crib and cot and, in my room upstairs, the team had put another crib next to my bed to simulate how our set-up would be at home.
“From the very start, they were so thoughtful and I felt relaxed and safe. I knew we had made the right choice.”
Caroline admits she would have struggled without the skills and support of CHAS staff in those early days and
even goes as far as to say that their input and guidance saved Ayla’s life.
She said: “The difference between my skills before going to CHAS and after is incredible. The team would watch me doing Ayla’s procedures and offer advice.
“I was given the education at hospital but I honed my skills at Rachel House. There, I had the time to sit with nurses and go through everything.”
Receiving the right advice is something Caroline still relies on to this day and she credits the team at CHAS for helping her through the tough times.
She said: “The support is there all the time. I’ve phoned at midnight and during the day and they’re always there. If I wake from a nightmare about something that’s worrying me about Ayla and need to chat to someone, I know I can phone CHAS.
“Every spanner that Ayla threw into the works seemed to be in the middle of the night, so getting advice from CHAS before I called 999 or phoned my mum and got her out of bed was great.”
Ayla is a bright and bubbly little girl and attends Lochies School in Sauchie, Clackmannanshire, where she receives specialist help and support, including learning how to use new tools to communicate with family and friends. Caroline said: “Ayla is doing amazingly well.
“She is learning to use an eyegaze communication tool that helps her build speech and make decisions. It gives her some control which is great.
“Her development has come on leaps and bounds and I’m in constant contact with the team at CHAS. who have seen her grow from a fragile wee thing into the thriving girl she is today.
“They also keep in touch with her school so they are up to speed on any changes or developments.
“We’re also lucky that we are able to get away as a family and visit Turkey a couple of times a year, which is where my husband is from.
“I know some children with the condition are not able to fly, so we’re really glad she can manage it.”
Children like Ayla have had their lives improved thanks to the support of CHAS and the charity are appealing to the people of Scotland to help them reach more families who desperately need their help.
Currently, they can reach only one in three of the children who need their support and CHAS need to raise £250,000 to fund more nurses at Robin and Rachel House.
Knowing how vital their care was to her family, Caroline is now urging anyone who can help to make a donation.
Caroline said: “My prior experience of hospices came from when my grandparents died and I never anticipated that a hospice could be a happy and fun environment.
“We actually spent Ayla’s first birthday at Rachel House, which tells its own story – we chose to spend her special day at a hospice.
“The staff are simply amazing and I really don’t have the words to express my gratitude for them. They literally saved my daughter’s life.
“CHAS is such a worthy cause for anyone to contribute to.”
From the very start, I felt relaxed and safe CAROLINE JOHNSTONE ON HELP FROM CHAS