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Why? August 23, 2009

Posted by Natasha in Infertility.
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At least, the version of this question that I can answer.

Not so much why, really as how. How did we get here?

The day after I met my husband, we were driving around Mount Dandenong together, and when this conversation took place, we were in Olinda, stopping at a little general store for Cascade Raspberry, and Peppermint Magnums. I remember the whole day with crystal clarity, a stunning afternoon, filled with Spring. It was the third of September, 2006.

This was the day that I knew that my path to having children would be more complicated than I had previously thought. (Because of course, we all think it will be like they tell us at school… Don’t look at boys, you will automatically fall pregnant! Ok, so I wasn’t really that naive)

This man, in whom I already knew I had found something very, very special, told me he would never be able to be a father. He explained to me that since he had been diagnosed with Klinefelters, almost 20 years ago, he had always been told that he would never be a father.

It takes a lot for someone to be so honest. This was not a conversation we were having months down the track, after getting to know each other well, after falling in love. This was day 2.

I still hold an enourmous amount of respect for my husband, for making sure I knew what I was getting myself into.

I said, never say never.

***

I read up everything I could on Klinefelters (Yes, I did actually go further than Wikipedia, but it gives a nice summary):

Klinefelter’s syndrome, 47, XXY or XXY syndrome is a condition in which males have an extra X sex chromosome. While females have an XX chromosomal makeup, and males an XY, affected individuals have at least two X chromosomes and at least one Y chromosome. Klinefelter’s syndrome is the most common sex chromosome disorder and the second most common condition caused by the presence of extra chromosomes. The condition exists in roughly 1 out of every 1000 males.

The principal effects are development of small testicles and reduced fertility. A variety of other physical and behavioral differences and problems are common, though severity varies and many boys and men with the condition have few detectable symptoms. Because of the extra chromosome, individuals with the condition are usually referred to as “XXY Males”, or “47, XXY Males”.

We stopped using birth control after a couple of months. I was hopeful.

In late 2007, some time after I had first cried at a negative HPT that I was so sure would be positive, I went with my soon-to-be fiance to visit his endocrinologist. He was due to have his 6-monthly testosterone implant. It was at this appointment that we first sought current medical advice about our infertility.

His doctor told us that there had been some advances in IVF, and that ICSI had been used with some success in Klinefelters patients. She referred us to Monash IVF.

It took us almost a year before we were ready to make that appointment. I kept hoping.

When we spoke to this doctor, things became much clearer. The endo was perhaps a little too optimistic about our odds. In patients who have undergone long term testosterone therapy, the natural testosterone production is suppressed, and the body basically loses the ability to produce any sperm at all. We had less than 1 in 1 billion chance of conceiving naturally. There was a procedure that could be used with ICSI, but it involved removing up to half of the teste, and searching, blindly, for immature sperm. In a patient such as Mr G, after 20 years of testosterone replacement, there would be less than 1 in a million chance of finding any.

We drove down to the beach that afternoon.

It was there that we decided to get a donor to help us become a family.

***

We had our wedding to plan, and while I had had all the initial screening tests, which had come up pretty much clear, and we had met with a fertility specialist who would focus more on me, we decided to put off the actual trying.

We faffed around with the ‘when’ originally it was to be July this year, then some time next year, then at some indefinite point. Then it came back to July.

And the rest of the story is in the archives.

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Comments»

1. jill - August 23, 2009

Wow, I’m so sorry you two have to go through this. This was a great “intro” post and I will be going back to read more.

I wish you lots and lots of luck and really hope ART works for you very quickly!

Happy ICLW!


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