The Press and Journal (Aberdeen and Aberdeenshire)
MUM ON A CF MISSION
Imagine welcoming your first baby into the world, only to receive the diagnosis of cystic fibrosis. Claire Johnstone told Ellie House why her little boy Alfie will not be defined by the disease
As we emerge out the other side of lockdown, many of us are looking forward to picking up our old lives. Taking the kids to parks or meeting with friends and family, after four long months apart. For the majority of parents, taking extra steps to keep our children safe will have been an uneasy experience. But for mum-of-two Claire Johnstone, staying hypervigilant is the norm.
The senior HR adviser for an oil company lives in Westhill with her husband, Kevin, who is an engineer.
The couple have two children, three-yearold Alfie and seven-month-old Charlie.
They were naturally excited to welcome their first son into the world, but had no idea of the difficult journey ahead.
Claire now hopes to raise awareness of Alfie’s condition, in a bid to help other families feel less alone.
“Alfie was born at 37 weeks because I had pre-eclampsia,” said Claire.
“When he was born he had a distended abdomen.
“They thought his tummy muscles hadn’t formed properly.”
Within 24 hours, Alfie was taken to the neonatal unit.
“He wasn’t feeding and he was vomiting a lot,” said Claire.
“During diagnosis it became apparent that Alfie would require a stoma to allow his bowel to heal.
“This was then reversed a month later. “It hadn’t crossed my mind that anything would be wrong with my baby.
“I remember being in the ward, this woman next to me was drinking Champagne.
“I didn’t have my baby, and I couldn’t cope with that.
“Thankfully, I was put into a private room.” Consultants told Claire and Kevin that they were 99% certain of a diagnosis.
Alfie had cystic fibrosis (CF). The inherited condition causes sticky mucus to build up in the lungs and digestive system.
Although treatments are available, there is no cure and CF causes a shorter life expectancy.
“We just didn’t know what to say, we had no words,” said Claire.
“I had heard of CF, but didn’t know what it meant.
“I remember going back to the room and I Googled CF. It is probably the worst thing you can do.
“Doctors cannot tell you how badly your child will be effected by CF.
“It’s not like other conditions where they can give you a specific diagnosis as to how his condition will progress, it’s all about how their body deals with it.
“Alfie has a dedicated team at the children’s hospital who support us and are always at hand to answer any questions or concerns we may have.”
Alfie has spent his childhood in and out of hospital, and the main problem is his digestive system.
“It was last July, and it was a really hot day,” said Claire.
“Alfie woke up screaming, he was beside himself with pain.
“A scan showed a twist in his bowel. “Alfie underwent emergency surgery which lasted four and half hours.
“They removed his bowel and put it back together again.
“I’ve always been very cautious with Alfie. “What people are doing now in terms of washing hands, I have done since Alfie was born.
“So if my friends’ children had colds, we avoided them, even if it meant Alfie was the only child not at the party.
“I have had to give up the control as he has got older, but he has never really asked questions. He just gets on with things.”
Despite spending the first three months of his life in hospital, Alfie is an energetic and happy little boy.
He is also a proud big brother to Charlie. “I felt robbed of the experience of having your first baby, bringing them home and welcoming visitors,” said Claire.
“There’s that typical picture of the baby going home in the car seat, we didn’t have that.
“I wanted Alfie to have a sibling, and Charlie has enabled me to experience becoming a mum again, without CF.
“Alfie is the happiest little boy. He’s energetic, he loves cars and farms and tractors.
“Before Alfie, I didn’t realise how strong I was, or could be. It puts things into perspective.
“People say that they don’t how I do it. But Alfie was my first baby, so I knew no different.
“I would never change it. The experience has brought me and Kevin closer together. We are the only ones who truly understand it.”
When it comes to starting primary school, Alfie will not be able to attend the same school as another child who has CF.
“People who have CF hold germs that can cross-infect another person with CF,” said Claire.
“It can be so lonely.
“The future terrifies me, because the average life expectancy is between 30 and 40 years old.
“The world of CF is one of the most medically advanced though, and there are some amazing drugs coming out.
“We want Alfie to live forever, he’s our son. “If speaking out helps another family feel less alone, I hope I’ve done that.
“Unless you have a child with a chronic illness, you can’t understand what we go through.”
I HAVE HAD TO GIVE UP THE CONTROL AS HE HAS GOT OLDER, BUT HE HAS NEVER REALLY ASKED QUESTIONS. HE JUST GETS ON WITH THINGS