Hospice saved my baby’s life
Mum praises work of Rachel House
Caroline Johnstone was 17 weeks pregnant when she received devastating news.
The mum and her husband Kerem discovered that their unborn baby had Edwards syndrome, otherwise known as trisomy 18 .
It is a rare and serious genetic condition from which many babies die before or shortly after birth.
Very few reach their first birthday but Caroline’s little girl Ayla is now 6 and thriving,
And she credits the team at Rachel House, the children’s hospice at Kinross, for providing the guidance that saved Ayla’s life.
Caroline said two weeks after Ayla was born she was advised to get in touch with Rachel House.
Ayla was discharged from hospital after three weeks and went to Rachel House for a few days before going home.
The mum admits that without the skills and support of the staff she would have struggled to look after Ayla.
She even said their input and guidance in the early days saved the tot’s life.
“The team would watch me doing Ayla’s procedures and offer advice and make recommendations,” explained Caroline.
“I was given the education at hospital but I honed my skills at Rachel House.”
Caroline believes that the best thing they did for Ayla was to highlight the benefits of a gastrostomy, a surgical procedure which allows feeding via a tube directly into the stomach.
“When Ayla was discharged from hospital she had to be on a nasogastric tube to feed her,” she added.
“This is usually fine but it’s not safe to use overnight when I was asleep and not observing her but, because her tummy couldn’t tolerate large volumes, she really needed to be fed at night.
“The nurses at CHAS talked to me about a gastrostomy but because Ayla had been through so much already and was so fragile my initial reaction was not to agree to the procedure.
“They always respected my wishes and backed off but they would keep bringing it up and tell me that many other children have had the procedure safely and are able to be fed during the night.”
Caroline allowed surgeons to go ahead with a gastrostomy when Ayla was six months old and needed a life-saving-operation for a bowel obstruction.
She added: “The gastrostomy honestly helped save her life and wouldn’t have happened if the team at CHAS hadn’t kept mentioning it to me.
“Ayla came on so much after the gastrostomy as she could finally be fed during the night.
“It was the difference between her getting enough food and not and, being so fragile; she really needed the nutrition.”
Ayla is now in P2 at Lochies School for children with special needs in Sauchie.
“She is doing amazingly well,” said Caroline, from Sauchie.
“I really don’t have the words to express my gratitude for CHAS. They literally saved my daughter’s life.
“CHAS is such a worthy cause for anyone to contribute to.”
I was given the education at hospital but I honed my skills at Rachel House