Wednesday, 28. June 2023
Do I want to be a father? Can I do that with cystic fibrosis? Because of the longer life expectancy and better health more and more men with cystic fibrosis are daring to want to become fathers. How is it to be a father with cystic fibrosis? In this PARI blog, Markus Hänni talks about wanting to have children and his personal pathway to becoming a father as a man with CF.
Markus Hänni: The thought of having my own children and to be somebody’s father is something I have always found wonderful. But for a long time I thought this was a dream I could not fulfil because of my illness: cystic fibrosis. I did not have a partner and doubted whether any woman would ever want to have a relationship with me – because I am, after all, seriously ill. When I then met my wife and we developed a happy and stable relationship, it was clear to me and my wife that we wanted a child.
Markus Hänni: It is true that some people do not get to fulfil their dream of becoming a parent. 98 percent of men with cystic fibrosis are infertile. The only option then is IVF. But IVF does not guarantee that you will actually become a father either.
We know many couples who keep having the extremely complex procedure of IVF over many years and who still do not have a child. We sometimes get to feel their frustration at this. We were lucky. IVF worked for us. We are very grateful that we have been blessed with two daughters.
Markus Hänni: We did not take the decision lightly, but did loads of research, put a lot of thought into it and weighed it up. Of course, we also had my wife tested to see if she is a carrier of cystic fibrosis. I got the “go ahead” from my pulmonologists.
I wanted to know how they rate my future and my life expectancy, to ensure that I can be there for my daughters for a long time. Back then, I had a relatively stable progression, with a few lapses that I always came out of.
We also discussed our desire to have children with our family and friends. There was agreement. But there was also disagreement. I think there are not many couples who put their desire to have children up for discussion in the way that we did, or who discuss this very personal subject with such a wide circle as we did.
But we wanted to go into the treatment to have a child with our eyes open, knowing that you cannot plan everything or eliminate all potential uncertainties. And so that is what we did. Finally, we went for IVF with a clear conscience. We are very happy that we decided to have children.
Markus Hänni was born in Bern in Switzerland in 1980. At the age of two he was diagnosed with cystic fibrosis. He has been raising awareness of cystic fibrosis since he was a young adult. Markus has also written books about cystic fibrosis, one of which he wrote with his wife Barbara Hänni.
The statements made in the interview are the individual views of the interviewee. They do not necessarily reflect the PARI view or the general state of science.
An article written by the PARI BLOG editorial team.
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