Cystic Fibrosis row: ‘Situation at CUH at this stage is so wrong’

Kara and Hugh O’Callaghan were invited out to Christmas dinner but their son’s condition meant they had to take the precaution of having their own fridge stocked as well.

“We’ve had to pull out of so many family occasions because if someone is sick, we can’t risk placing Leon in that environment,” says Kara.

She’s not complaining, just stating the reality of what having a child with cystic fibrosis (CF) is like: It means simple things like playzones are no-go areas and visitors to their home in Clonakilty, Co Cork, must remove their shoes and sanitise their hands.

Because CF affects not just the lungs but also the gut, the O’Callaghans face an uphill battle in putting some weight on their child. Then there’s the medication and the hospital trips.

“You have all this to worry about and on top of that, we have the worry of the hospital environment. The facilities at Cork University Hospital are so bad. When we’re bringing Leon for a check-up, we put his raincover over his buggy and we don’t take it off until we get into the doctor’s room,” says Kara.

She describes the time of her son’s diagnosis at the age of three weeks as “the most devastating time of our lives” but what traumatised them was “how ill-equipped” CUH was to treat people with CF.

“Considering we were informed that Ireland has the highest rates of CF in the world with one in 19 of us carrying the gene, we assumed Irish hospitals must be at the cutting edge of CF treatment and care,” says Kara.

“And then you find out that that is not the case and not only that, but if you want proper facilities for your child then you just have to get out there and get involved in a charity and basically do it yourself.

“I found all this out at a time when my heart was breaking and my brain was about to burst, and I was assuming the practical supports would be there, that the hospital would have the specialist facilities my child needed.”

Kara is angry that parents must fight to access facilities most of us assume are a given. Ideally, she would not be sacrificing her family’s privacy and telling her story in these pages, but she feels as if there’s no choice left.

“The whole situation at CUH at this stage is so wrong, and if we don’t fight to protect the adult CF facilities at CUH, then who’s to say the children’s facilities won’t suffer as well?”

Kara says if the promised adult in-patient CF beds fail to materialise at CUH, the family will consider bringing Leon elsewhere for treatment. Emigration has crossed their minds.

“It’s something we’re reluctant to get stuck into right now but we would certainly consider moving Leon out of CUH to another hospital up the country because we are not willing to accept the facilities CUH have in the long term. It would be too much of a sacrifice in terms of Leon’s health,” says Kara.

Kara believes there’s slim chance of the Government funding the specialist isolation facilities that CF sufferers need. “If these facilities don’t become a reality at CUH, we can’t picture ourselves remaining in Ireland with our family,” she says.