Hello my name is Gareth and I am an XXY person. Often enough these days when out and about I will say to a stranger, ‘do you want to hear something cool about my children’? (Of course the answer is always yes :)) “These children exist because I don’t have sperm’ PAUSE.
A brief background: in 2017 when Anna and I were trying to have a family I learned that I have a different chromosomal arrangement to other men. Following two semen analyses which came back with zero sperm count, Anna and I were referred to a private urologist here in Ireland. Following a brief examination this medical professional said, ‘Gareth it doesn’t work downstairs, you need to get over that and move on’. On hearing this news, I would best describe it as an out-of-body experience. I left with Anna in a complete daze and when we left the hospital, we both completely broke down.
Over the coming weeks I entered a form of depression. I didn’t know it was possible to be born without sperm. Yes, I had heard of guys losing the ability to produce sperm through an accident and some people having a low sperm count but not no sperm. Gradually I gave up my running and cycling and would stay at home playing on my Xbox late into the night and drinking more beer and wine.
During this time, I was going for therapy as I had a very difficult relationship with my own family. It felt a very safe space, so I began to talk about my infertility and what it meant to me. One of the many benefits of therapy is that you get these negative thoughts out of your head, this alone I find so great for my mental health.
Anna kept hearing about a urologist in London called Jonathan Ramsay, so she arranged for us to get an appointment with him. I remember so clearly my very first meeting with him. He is such a kind and warm person; I was cautious after my previous experience but being in his presence really reassured me that being here was the right thing.
He asked me about my life and unbeknownst to me he was ticking off things in his mind that could indicate that I was an XXY individual. After the meeting he arranged for me to get the ‘Karyotype Test’. A few weeks later the results were in, I am an XXY person. Upon learning this I felt both sadness and relief at the same time; It wasn’t that I didn’t have sperm because of something that I had done or not done, it was my genes.
In the coming months Jonathan Ramsay performed an FNA, (Fine Needle Aspiration). I would describe this as a reconnaissance mission. Needles were injected into my testicles in the hope that sperm might be found. I remember so clearly when Jonathan told Anna and I the results. He said, ‘You're one of a kind, I believe you're the very first person that I know of who is in their mid to late 30s who can produce the building blocks that make sperm’. On hearing this news, I was beyond excited there was still a chance that I had sperm.
Over the coming months I went on a cocktail of drugs and hormones. It was hoped that my body would absorb all this medication and turn it into the fuel to help develop sperm which could hopefully be retrieved via a Micro-TESE. Mr Ramsay said that the chances of it working were slim but I said yes to the proposed plan.
Ahead of time Mr Ramsay had said that we should look at using donor sperm as a backup plan. This I found very difficult as I didn’t know anyone who had used a sperm donor or who was donor-conceived themselves. In the end Anna found out about an event run by the ‘Donor Conception Network’ that was happening in Belfast. This conference changed my life as I heard two people (including a donor-conceived woman) speak about the benefits of using donor sperm.
The day came for my micro-TESE, after at least two hours of searching it was discovered that the months of hormone treatment hadn’t worked, it was now confirmed that I was infertile. At this point in time the IVF clinic that we were with used the donor sperm and mixed it with eggs collected from Anna. A few embryos came through but ultimately this first round of IVF failed.
We then did two further rounds of IVF and in November 2019 our twins, a boy and a girl were both in a maternity hospital in Dublin. When I met them all that pain that I had gone through just washed away from me, here were my children, they were finally here.
Fast forward to 2021, I was asked by Ryan Bregante of the ‘Living With XXY’ foundation in California if I would be interested in doing a podcast. At first I was worried that my family would find out! At this point I had never ever told them what Anna and I had gone through. In the end, after talking with Anna and my therapist, I came to the conclusion that I should do it knowing that others could benefit from hearing my story.
When the podcast was released, I shared it with friends and some family members that I have a relationship with. So many couldn’t believe what Anna and I had been through and encouraged me to do more interviews!
Since 2021 I have done around 40 interviews primarily in Ireland and the UK across radio, podcasts and print. In 2022, I ran my fourth marathon to raise awareness of XXY and in 2023 I did a TED Talk in Dublin on the subject of Klinefelter Syndrome and male infertility.
To date in 2024 I have had a meeting with a member of the Irish government on how the state supported IVF plan can be further improved to help men and couples who are struggling to have a family. In April I did my very first live TV interview with a New York news channel as part of the USA's, 'National Fertility Awareness Week' and this month I will be running my 5th marathon to again bring awareness of XXY and male infertility.
Since becoming an advocate, I have learned so much about myself and how our society really needs to evolve. I believe that there is too much of a focus on women when it comes to fertility and all too often men are simply forgotten about. What I would say to the XXY community is that more people need to come forward and help by raising awareness. All too often I hear the perceived negatives of XXY, I don’t hear the positives such as more empathy for others and that we are strong visual learners. Before I knew I was XXY, I cycled the length of Ireland in 6 days, a distance of 693 KMs and ran a marathon all on testosterone levels that were around a third less than a typical XY man. More medical professionals need to know that XXY people can do so much more than what they have read about.
Not having sperm and learning about the person that I am has made me into an even more positive person. I can honestly say that I am so PROUD to not have sperm and that the children I have, exist because of the person I am.
I am a European advocate for the ‘Living with XXY’ foundation and an advocate for ‘IVF Babble’. To learn more please go to www.prettyfly4xxy.com or @prettyfly4xxy on Instagram.