In 2017, my wife Anna and I were trying to have a family. Following two sperm analyses which both came back with 'zero sperm count', a visit to a urologist in Ireland and then a second opinion with a urologist in London, I learned that I have an extra X chromosome in my genetic make-up.
So what is XXY?
Whereas at a chromosomal women are XX and men are XY, I am XXY. This condition is also known as 'Klinefelter Syndrome'. I refer to 'Klinefelter Syndrome' as XXY as from experience I am seen in a lesser light when people hear the word syndrome.
For my wife and I to have a family, Anna chose to come off the medication that she takes for her Multiple Sclerosis. Our window for having a family was going to be tighter than most to minimise the amount of time that Anna's MS was untreated. We therefore visited our GP early on to have the relevant hormone and fertility investigations to ensure that if there were any issues they would be caught early. Anna's tests all came back normal but my sperm count (and a repeat one) was "zero".
Following the sperm analyses' results, Anna and I went to see a urologist privately. The hope was that seeing a specialist would give me options for drugs or lifestyle changes that would make sperm production possible. Imagine that scene in the movie 'Thelma and Louise', when they're at the top of the cliff, that's how I felt; I had no idea of the massive bombshell that was about to be dropped on me. The urologist barely examined me and then told me the most crushing news anyone could ever expect to hear.
Mr Ramsay then told Anna and I about an operation called an 'FNA', (Fine Needle Aspiration')'. What this means is that 16 fine needles are inserted into each testicle in the testicle sack, it is a way to look for pools of sperm. My understanding is that sometimes a blockage can occur inside the penis and this approach literally goes to the source. He told us that if sperm could be found I would then have to get a follow-up operation called a Micro-TESE, (Microsurgical Testicular Sperm Extraction). A Micro-TESE is similar to the FNA but it goes one step further and sperm is then removed surgically.
Anna and I were both at home in Ireland when we got the call from Mr Ramsay to confirm that I am an XXY person. This was confirmation to me that I hadn't done anything to endanger my sperm production it was something I was born with. Mr Ramsay told us that if an XXY man has sperm the ability produce it usually drops off in their mid-20s, I was 37 at the time. Anna and I decided to opt for the operation to see if there was any, the cost of the FNA wasn't prohibitively expensive. We then arranged for the operation and went to London as soon as we could.
When I get nervous I often chat away to people as it's a good way to distract myself. Even now when I think about walking down to the surgery I remember chatting to one of the lads about things to see in London who was escorting me. On the way to surgery we walked past a staff room, I can still see all the various surgical teams chatting and having tea/coffee that I glimpsed on the way past. Being in a hospital environment is hard for me, my mum died in a hospice so I have unhappy memories of these places. I felt that I should overcome this fear as it was holding Anna and I back from potentially having a family and so I walked to surgery. I remember having the chat with a member of the surgical team, I remember how cold it felt and then closing my eyes and then... nothing.
Slowly I came round and I was back in the room that I had left earlier that morning. Right now I can see the window and where the bed was positioned in the room. Anna was there and she came over and held my hand. Soon enough Mr Ramsay came to our room to tell us the news. He was very excited as he said that I was very unique in what they had found. He said that I was the very first person that he or any of his known colleagues had ever come across in the entire world, who in his mid to-late 30s who still had the ability to produce the building blocks that build sperm. On hearing this news both Anna and I were ecstatic. Mr Ramsay told us that he believes that I am a mosaic of XXY which means that I have both XXY and XY sex cells.
Over the coming days as my recovery from the operation continued I was very sore. Something as small as stepping off a pavement and on too a road was too difficult for me. I'd have to move slowly up the path and then stand and wait at the traffic light and cross where the path had been designed so that a wheelchair user could cross. Even getting to our room in our Airbnb was a challenge as lifting my legs had to be done in a slow and controlled manner.
Shortly afterwards Mr Ramsay put forward the following proposal to which I agreed. He felt that if I took a combination of different hormones and my body was able to absorb them and hopefully turn them into testosterone. This would become the fuel for my body to produce sperm. While on this course of drugs I was taking Clomid, (this is a drug given to women for breast cancer).
In Europe we measure testosterone from zero to 30. An XY man's natural levels are between 19-24. When I found out that I was XXY my natural levels were between 11-13. Testosterone can be measured from a blood test.
My body had learned to operate on this deficiency and in 2013 I cycled the length of Ireland in 6 days, a distance of 693kms and in 2016 I ran my first marathon. I completed these challenges not knowing that I was XXY. I did these achievements on testosterone levels that at the very least were a third less than a typical XY man.
Following the FNA, my natural testosterone levels plummeted to 4. I went within a year from being able to run a marathon to not having the energy to walk 400 metres to the local shop. Fatigued was how I felt. At this time I still had my wedding film business so I would have to bring along another experienced videographer to my weddings as I didn't have the energy to stand and walk around for long periods of time.
Over the coming months my testosterone levels slowly began to rise thanks to TRT, (Testosterone Replacement Therapy). At first I was on testosterone gels which I would rub into my upper legs and then it was inter-muscular injections.
With everything that had been happening over the course of this time I went back to having therapy. For those who haven't had to go through what Anna, myself and countless others have experienced is the mental exhaustion. Trying to have a family becomes this invisible dark cloud that hangs over you all the time. I have found that asking for help and going for therapy is a really great way to help bring perceptive to your situation and to get some of the thoughts out of your head.
Following the news from the first urologist in Ireland I began to experience a change in my dreams. For weeks on end I would experience the same dream over and over again. This dream involved Anna a child and I. I would be kneeling down with my arms open wide on a lawn and Anna would have a small child with her and would be standing around six metres from me. The child wasn't a boy or a girl it was a young child. As the child began to run towards me the child would start to fade. The child would never ever make it to me, this dream would repeat over and over again. When I talked to my therapist about this dream, she said:
On hearing this from my therapist I found it both comforting and upsetting at the same time. Even at night when I slept my brain was keenly aware of potentially the person that I was to be. I have mentioned it before and I'll mention it again this whole part of my life was extremely mentally exhausting.
Following the potential news that I might be able to make sperm, Mr Ramsay advised Anna and I that we couldn't trust that the course of drugs and my body's ability would necessarily result in sperm. He advised that we should look into getting sperm from a sperm donor as a back-up.
For the next ten seconds or so I want you to imagine going onto a car website and looking at the various models available. With many of these sites you have the ability to use filters to adjust for paint, alloys, air-conditioning the list is endless. This is very similar to how a sperm donor websites operate. You can pick skin colour, height, education, medical history it's all very overwhelming to be completely honest. Some of the websites would give you images of the donor as a small child to be honest this wasn't really that helpful though at the same time you could get this detailed medical family history breakdown. You know yourself if you meet someone in a bar/club or any social situation you don't have all this additional information so trying to make a decision is very difficult.
There were plenty of times that I would be sitting in front of my laptop in tears as I was in turmoil about the potential person that I was.
During this period Anna found out about an event that was going to happen in Belfast. It was being organised by the, 'Donor Conception Network', (DCN). They are a charity that provide support and raise awareness of donor conceived families. We decided that this would be a good thing to go to so we booked tickets for the two day event.
I didn't know how much of a profound impact this event would have on our lives as it was so positive and transformative. There were a number of speakers at the event, two of which stand out for me. Firstly there was a man called 'Danny'. He had an accident and lost the ability to produce sperm. When he and his partner were going to have a family they had to look for a sperm donor. He story was incredibly moving and I was overwhelmed on hearing it. I remember so clearly when he said, 'when his child was born'. He didn't see the birth of the child as someone else's it was his child. At a later part of the conference this amazing woman who I believe is called Lucy spoke. She is a sperm-donor conceived woman and her words had such a powerful and positive experience on me:
When I heard that woman say the statement above, this was when the positive pivotal shift occurred in me. Here was a person talking about her DAD. She never referred to him as anything other than her parent. She didn't see him in a lesser light. Her words were, 'fucking amazing'. If Anna and I had to use donor sperm in the future for me it wasn't a distant second as now I had met and heard people talking about its many positive aspects. I was overjoyed this was so so incredible.
After the event we decided to contact Jonathan Ramsay to ask him if he had any contacts or suggestions on where we could possibly get sperm. He suggested that we contact a colleague of his called Erica Foster. Erica runs a sperm bank that is located in the Whittington hospital.
Initially Anna and I sent Erica a message through my LinkedIn profile, the image on my profile was off me with a camera. When we got to talk to her she told Anna and I that she had a donor who looked very like me as she could see what I looked like from my LinkedIn, (go LinkedIn). Both Anna and I got a really kind and warm feeling from Erica and we felt that she was good fit for us. Over the coming conversations with Erica she was so reassuring and was able to answer all our questions.
We now had our donor sperm if we had to use it, the next stage was the micro-TESE.
Earlier in the year I had decided that I didn't want to have my own business any longer. In July 2018 I filmed my last ever wedding in Galway city. Within a week of this event I was in and A&E unit of a hospital. Following many hours in this department I was finally admitted with a suspected appendix problem. Over the next eight days while being monitored and then in recovery after surgery from my appendix being removed I got home.
I see it now as an accumulation of stress that had been building for many many months and years. This unforeseen event pushed the micro-TESE back as I had to now recover from this.
As I have mentioned and you have read what Anna, myself and many others have experienced when trying to have a family is very draining on your mental health. When Anna and I started to come to London on a more regular basis we would often stay on for an extra day or two to have some time that wasn't the all consuming world of XXY and IVF.
Following treatments we went to see former Roman sites that were accessible by train from London. Places that we visited included Colchester, Bath and Saint Alban's. We both have so many happy memories from this part of our life that were simply great craic.
The day of the operation had finally come, it was an early morning start as we left our Airbnb. We checked ourselves this time into the Lister hospital and set up in our room. Today both Anna and I were having procedures.
The plan was for a synchronised transfer. Eggs would be collected from Anna and if sperm could be found following the micro-TESE from myself, the sperm and eggs would then be fertilised together. If no sperm could be found then the donor sperm would then be used.
This was now my third operation within a year. Both Anna and I had been through so much already. There were so many questions in my head such as will the hormones work? Will they find enough eggs from Anna?
Then it was time and I headed off for the micro-TESE operation, I'd put myself through so much, what was going to found?
Following the zero sperm retrieval from me the medical professionals then switched to using the donor sperm using the eggs that they had retrieved from Anna. We learned that some of the eggs and sperm had gone on to become embryos in the coming days.
Then after a few days we went back to the clinic and did our first transfer and then experienced the 'two week wait'. This is a term used to describe the period of time that you have to wait and hope that the embryo will start to develop and hopefully a pregnancy will begin.
After our two week wait, Anna did a pregnancy test and... it was positive! Unfortunately our elation only lasted a few days as she miscarried the following week - this is known as a 'chemical pregnancy' as it was so early on. For both of us this was so hard as in the space of a few weeks we learned that my infertility was confirmed and Anna's pregnancy had failed.
After a short amount of time we decided to have another go. We had learned that the chances of IVF working on the first round was slim. These days many clinics can grade the quality of the embryos as they can see so much detail. including the wall of the embryo. When it came for the time of the transfer the clinic had identified a particular embryo that they said was of a very high quality.
Following the transfer Anna and I felt so confident this was going to work. Can you imagine how difficult it was for us when this embryo failed as well. The clinic didn't know why the failure had occurred. I would say I found this as hard as the infertility as some hopes and dreams were now gone.
Emotionally and physically Anna and I were exhausted so we decided to take a short break. We went to spend Christmas with family in the USA.
In March 2019 we were back in the clinic in London for our third round of IVF. We had decided to ask that two embryos be put back this time. You think this doubles the chances right? You're thinking that if one fails you have the second one? Unfortunately it doesn't work like that but if you put two embryos back it increases your chances of twins by 40%.
Anna and I were so desperate for a family that we opted for the two embryos.
Anna and I decided that we would go away for a break from everything so we headed to the north-west of Ireland. We headed to county Donegal a beautiful and amazing part of Ireland.
The two week wait was finally over and Saint Patrick's Day was the day we found out if Anna was pregnant. I didn't dare to think it was a done thing, we'd been here before. Anna went to the bathroom and returned with a pregnancy test and we waited.
Then the news we so desperately wanted appeared on the side of the test kit, Anna was pregnant. Tears of joy, excitement, sorrow, happiness it was so incredible.
As we drove into Dublin in November 2019, I actually couldn't believe that the day had come. We had an early morning start as today Anna was going to have a planned caesarean section .
Ahead of time we had decided that Anna's friend Eimear would attend the birth of our children. Hospitals have always been difficult places for me and I didn't want to impact on the arrival of our children or on Anna's birth experience.
As I waited I looked out across Dublin from the room that I was in. The weather was lovely and bright. Then Eimear came to me and said, 'Gareth, do you want to meet your children?'.
As I walked into the recovery unit I saw Anna lying there with all these machines around her. Lying on her was a small child and beside her another child in a small bassinet. It was so overwhelming for both of us. All that pain, that grief, that sorrow just washed away from me on seeing the children. There aren't the words to describe the feeling that I had on meeting MY children. One of the medical team said to me if you take your T-shirt off it is better for the skin to skin contact with the children, it helps with the bonding with them. They said, 'you're now now a dad, do you want to hold your children?'. On hearing those words it struck me that I was finally a DAD.
Feel free to contact me if you have any questions about XXY. I believe the more we talk about XXY and male infertility the better the world will be.