XXY man on being ’emotionally destroyed’ when told he was infertile

A former Lisburn man has opened up on the ‘horrible’ and ‘difficult’ day he was diagnosed as infertile which “emotionally destroyed” him.

41-year-old Gareth Landy, who now lives in Kildare, says four years ago when he and his wife Anna McLeod (37) were trying to have a family, learned that he had an extra X chromosome in his genetic make-up.

This makes him an XXY man, also known as Klinefelter syndrome which the NHS say does not usually cause any obvious symptoms early in childhood – and even the later symptoms may be difficult to spot – but how infertility tends to be the main problem.

After two operations on his testicles and months of injections, Anna and Gareth then opted for IVF, using a sperm donor.

On their third round of IVF, Anna got pregnant and in November 2019 their twins were born – nicknamed Abba and Tutu.

Gareth told Be : “Anna was not getting pregnant, and she has MS. She came off her MS medication, which is aggressive on your body, to try and get pregnant so we had a definite timeframe for this.

41-year-old Gareth Landy

“Anna got checked out and they said ‘why don’t you go check what is happening with you’.”

The former Co Down man was then told he had no sperm count, saying he was left “devastated” and was then referred to a urologist.

“That was one of the worst experiences of my life. He checked me over briefly… and just said ‘Gareth, if you were my son I’d be honest and tell you what it is.

“At this stage I’d no idea the bombshell that was going to be dropped on me… he said, ‘Gareth, it doesn’t work downstairs, you need to get over that and move on.’ That is how I was told.

“Getting that news is overwhelmingly horrible and difficult. That is why I want to come forward about this,” Gareth said.

The father-of-twins went to see a specialist in London, and said he was “emotionally destroyed” by being told he was unfertile.

Gareth then had a genetic blood test and found out he was an XXY man. Klinefelter syndrome affects around 1 in every 660 males, according to the NHS.

He then had a Testicular Mapping (FNA) procedure, took a number of medications and hormones which he said “made him unwell” and had a Micro-TESE procedure. Gareth was afterwards told his ‘ability to produce sperm was diminished’.

The pair then switched to IVF in 2018 and found out on March 17, 2019 that Anna was pregnant with twins.

Gareth said: “It was amazing, it was so overwhelming. We kind of knew it could have been twins as we put two embryos back on our third round of IVF.

“Much like Anna, I was pretty anxious through the pregnancy as I didn’t want to get my hopes up because we had been through so much…

“That whole part of our life wasn’t really that enjoyable, it was stressful, the whole thing.

“I want to make people aware of XXY, that is what I have, but the reason I have come forward is… I really am so glad I don’t have sperm. I really mean it, because if I had sperm, these amazing children wouldn’t exist.

“When I found out that news about me, I retreated within myself. I have gone for a lot of therapy. Men bottle it up, they just do.

“We know people who have gone through IVF and they won’t even tell their family that they did IVF because the guy feels shame that he and his wife can’t conceive naturally. It is just so totally bonkers, it is not your fault, you were born that way.

“I’m now the advocate for the ‘ Living With XXY ‘ non-profit foundation based in California. I am their advocate in Ireland.”

Gareth explained how emotional he felt when he went to one of The Donor Conception Network ‘s events in Belfast.

The 41-year-old said: “I met and talked to people who were donor conceived children. There was this woman, she was amazing. She was 24 and said ‘He is still my dad, he is my dad’. I got really upset listening to it.

“She said, ‘Ok, so my dad, my actual biological dad isn’t a part of my life, he is just someone who donated sperm. But my parents are my parents and that is my dad’.”

Gareth added: “I just know so many people, especially men, who just can’t change their mindset. They can’t ask for help. It’s just a cycle of – we don’t ask for help so we struggle.

“It is really important for me, [I’m] trying to change this.”

For support and advice on fertility issues, visit Fertility Network UK.

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