COURAGEOUS CAOIMHE Caoimhe Cafferkey with her mum Karen and brother Robert at their home on Achill Island.
WHEN Karen Cafferkey gave birth to her second child in January 2010, she could not understand why the student doctors were asking permission to see her new-born daughter. There was nothing during her pregnancy to indicate there would be any complications at birth and the only information Karen received was that there was a problem with the baby’s kidneys.
However, there was a reason why the students wanted to see baby Caoimhe. She was born with a condition called bladder exstropy, whereby the bladder and parts around it form outside the belly. The condition is so rare that it affects only one in 100,000 newborns, and no other person is affected by it in Ireland.
“I was unaware there was anything wrong with her,” explained Karen. “I was basically told there was a problem with Caoimhe’s kidneys at first. I don’t think Castlebar [Mayo University Hospital] had ever seen anything like that. I was in the ward on my own, and she was in the special care unit … I had a lot of student doctors and nurses waking me up asking if they could see her.”
Karen suffered an infection following the birth and was only given pictures of Caoimhe before she eventually being brought to see her.
“It was scary and difficult to be honest. When I was handed the photographs at first I thought the worst. When they lifted me off the wheelchair to see her, I couldn’t believe it … I realised then why everyone wanted to see her.”
A few days after her birth, Caoimhe was taken to Our Lady’s Hospital for Sick Children in Crumlin, where a procedure known as ‘a closure’ which puts the bladder back inside her body, took place.
However, more bad news lay ahead for Caoimhe. A few months later, the HSE and the hospital informed Karen they were unable to look after her daughter, and Caoimhe had to be referred to the Great Ormond Street Hospital in London.
Since then the family has been under the care of Consultant Paediatric Urologist, Mr Peter Cuckow, and they must travel from their home in Achill a number of times a year for appointments and procedures.
The first major procedure Caoimhe underwent in Great Ormond Street is known as a ‘Kelly procedure’. She was just two years old. Caoimhe was born with no sphincter muscle and the medics had to use existing muscle and soft tissue to create a ring of muscle to act like a sphincter.
The surgery was a success, but it will not be the last time Caoimhe goes under the knife, and she faces another major surgery later this year. This time she has to undergo a bladder augmentation because the organ is putting too much pressure on her kidneys.
“Because her bladder is only half the size it should be for her age, she has to have a bladder augmentation. They stretch the bladder to make it bigger so her kidneys won’t be under as much stress as they are now. The worst case scenario is if her kidneys did shut down … and that would be the worry for the future,” Karen explained.
Caoimhe, who celebrated her seventh birthday last week, will need care following the operation for up to two years. To raise funds to help pay for that care, a charity darts night will take place this Thursday night, January 12, in the Breaffy House Resort. The main attraction will be the two-time PDC World Champion Gary Anderson, who narrowly lost out on winning his third world title last week.
“I’m a big follower of darts,” admitted Karen. “I was very disappointed when Gary lost the final. We were Team Anderson,” she laughed, “but we are still proud of him and we will give him a Mayo style welcome.”
Up to 300 people are expected to turn up on the night, with 25 players raising money to have the chance of taking on Anderson.
Karen said that with the uncertainty surrounding Brexit and what it could mean for Irish patients in the UK, fundraising is more important than ever, and she thanked everyone who has supported them.
“It is very tough and stressful especially with Brexit hanging over us. I was talking to someone in the HSE and they said the best thing to do is to continue to fundraise.”
Caoimhe is currently in First Class in Bunnacurry NS in Achill. She's a bright and bubbly child, but the procedures are tough on her.
“She has good nights and bad nights, but thank God at school she has not suffered too much. She is very poorly and annoyed after the procedures. It really gets to her. Even now she complains about having no bellybutton and asks why her friends have one.
“I’d like her to stay in the class she’s in and do the best to keep up with her school work. Hopefully this operation will help her a great deal.”
The more Caoimhe grows, the more the condition seems to be affecting her bowels, and Karen is not sure what else the doctors will discover down the road. Still, there's one thing this loving mother is certain of: Her daughter's courage.
“She was born fighting and you can still see it in her she is a little fighter. No matter what it is she will fight it.”