Billy O’Toole will celebrate a milestone birthday on the May bank holiday weekend. He’ll be 40 years old. A big birthday by any standards (though not as important as his niece’s coinciding 18th birthday celebrations, he clarifies). Billy has cystic fibrosis (CF) and had a lung transplant when he was 24. His older brother died from the disease before Billy was born.
“At the age of 18, my family had a birthday [celebration] for me, and it felt to me it was very extravagant. We had another one when I was 21. I know they didn’t say it, it was like an elephant in the room, but it felt like ‘oh God, this guy mightn’t have many years left to live’. Now that I’m turning 40, I’m getting to a stage where it’s definitely not my last birthday. I can’t wait ‘til I’m 50, 60. It’s a huge milestone and I look at it as, ‘great to get here, but what’s next?’”
Growing up, Billy didn’t really know what cystic fibrosis was. His mother died when he was seven, but he recalls his aunt telling him that, as a young child, he “was very sick. And dad said to her, ‘I wish God would take him’, because I was so sick when I was a baby.
“The day-to-day life didn’t affect me until I was about 12. And then CF came to the forefront. Stomach issues came first. And then from 12 until the age of about 20, I spent time in and out of hospital a lot.”
He describes the age of 12 to 24 as “the most horrible years of my life”.
His teenage and early young adulthood was disrupted by hospital visits, frequent lung infections, and recurring weight loss and weight gain. It meant his goals for life as a young man were much more short-term focused “My goals then were very, very weak. My goals then were to stay alive for the next weekend to go out.”
Having a lung transplant in 2010 was transformative to Billy’s quality of life. “CF kind of left my head in a way,” he says, explaining that there’s a huge misconception among many people that a lung transplant means a person no longer has cystic fibrosis. Whereas “we always have CF. CF never leaves us. I just thought I can have a crazy life here. I can do whatever I want, and obviously, I went drinking and did things I shouldn’t have done.
“I have brain haemorrhages, covids, swine flus, I was in a coma twice … I kind of lost the run of myself. I actually had to ground myself again and seek counselling. CF Ireland helped a lot with counselling and helping me guide myself through life”.
Three or four years after the transplant, he began to consider the possibilities now open to him. “I started looking into relationships. I can have a girlfriend now. I can have a car. I could have a job, I think that was the biggest one. I could actually work.”
In 2019, Billy met his wife, Niki, and the couple decided they would like to have children. “I knew I was infertile,” he says, a consequence of having cystic fibrosis. “She didn’t know that and we were trying for kids. She couldn’t understand why not. I knew all along and I was ashamed of the whole infertile thing.”
Male infertility isn’t something that’s widely discussed, and Billy points out that the shame around being a man who can’t have children is not unique to men with CF. “If a normal healthy 24-year-old man was infertile, they’d say, ‘what’s wrong with you’. It’s the Irish of, ‘why aren’t you drinking? Are you on antibiotics? Are you driving?’ It’s being judged before people know the full story.”
It’s a “male weakness”, he continues, referencing traditional expectations of men. “A male in a relationship is supposed to bring in the bread … he’s supposed to provide your wife with everything that she has. And if you can’t provide your wife with children, that’s the beginning of, ‘I can’t provide anything for my family’. I fully believe that’s where it originates from.”
The couple decided to try In vitro Fertilisation (IVF), supported in their decision to do so by CF Ireland, who provide a grant towards fertility treatment. But, before this, O’Toole and his wife discussed the possibility of a prospective child having the disease.
We live in very different times from the 1980s Ireland when O’Toole was born, he says. “When dad had me, and you lived in a religious country, and there were no condoms … Nobody had a choice of what child they had.”
Niki is not a carrier of the cystic fibrosis gene, so the couple knew going into fertility treatment that a baby would not have CF. (A child must inherit two mutated CFTR genes – one from each parent – to have the disease.)
The couple underwent normal fertility investigations and treatment, but because cystic fibrosis results in a man’s Vas Deferens not forming properly, semen samples needed to be extracted directly from his scrotum, he explains. “We were a bit naive going in the first time thinking, ‘this is going to be perfect. It’ll work, and everything will be fine.’ Niki took the hormone injections and it’s very tough. I mean as much as I went through with that [semen extraction] what she went through is a hundred times worse … She got the embryo out back in. And it didn’t take.”
On the second IVF attempt, Niki became pregnant with their daughter Naoise. “Her waters broke on April Fool’s Day, but she didn’t arrive until the 4th.”
CF Ireland (their fundraiser, 65 Roses Day takes place on April 10th) has played an important part in Billy’s life, he says. Not only in supporting him with physical and mental health, but also in helping him realise his dream of being a father.
At one point, the grants provided centred largely on sickness costs, but now it’s not just about “how are you going to handle the sickness”. They’re also about “how are you going to manage the future”, O’Toole says. “Without the grants, without the fundraising, we might never have had Naoise”.