Sertoli-what syndrome?

We walked into the meeting with our RE and her first question as we sat down was “So, what is your impression of how the surgery went?”

Er….badly? As badly as it could possibly go? Right?

As it turns out, yes. There was not only nothing found, after analyzing the tissue that was biopsied, it was found that Jon has Sertoli-only syndrome (you know, the one on the list of possibilities she pointed to and said, “this is really rare, I seriously doubt that it’s this one”? Yeah, that one).  Apparently it is only the 3rd time that our RE has seen Sertoli-only syndrome in her 15 or so odd years of working in this line of medicine. This means that Jon’s body does not produce the cells needed to make sperm. It’s a gene mutation that he was probably born with and there’s really no way he could have known this and nothing he did to cause it, it just happens. So, since it’s not a blockage issue, and it’s not really a production of sperm issue (I mean, it is, but to produce the sperm, he’d have to produce the cells needed to make sperm, so it’s bigger than just a production of sperm issue..) there is really nothing they can do.

Of course, we knew this already. But our RE spent a lot of time telling Jon that it wasn’t his fault. Which Jon knows. (It got to Good Will Hunting-levels of awkward..”it’s not your fault…it’s not your fault”) I don’t think either of us is dwelling on this fact. There’s nothing he could do about it, there’s nothing he did wrong and there’s no way to fix it. I feel like since we got back from Florida, we’ve both started dealing with the facts a lot better. Instead of dwelling on what cannot be, we’ve both moved forward to new solutions and researching what’s available and what the results could be and how both we and the potential children would deal with the decisions over time. I’ve been able to talk to someone with first hand knowledge that things can be ok and I’ve found many more positive resources online as well. They aren’t all doom and gloom and we-hate-our-“parents” but they are normal, well-adjusted, informed kids with normal lives with a unique start-of-life story.

Over the last couple of weeks we’ve talked about donor sperm and whether or not we would both be comfortable with it. Jon sees it as the next logical step. If we can’t have a child that’s 100% us, then the next best step for us would be at least 50% us, right?  He will love a child that we bring into this world no matter where it started and I think that this is something that we can handle together. We have worries about things like how and when to tell the child the truth and what kind of response the child will have but we’re setting up a meeting with a social worker to handle all that stuff.

Another bonus is that with donor sperm, we can try a few cycles of IUI instead of going right to ICSI/IVF first. No needles! That eliminates that part of the stress, at least. Now there are new stresses, but we’ll get to those.

We went to the RE appointment prepared with questions about donor sperm. How to choose a donor, does blood type matter, what kind of sperm to buy etc etc and she answered all of the questions we had, which was great. She also gave us a packet for a local sperm bank to look into, apparently we can get kind of a “home town discount” which isn’t really a discount, but cuts costs because we can pick it up instead of having it shipped which cuts down on costs each cycle.

There’s a lot to think about here!  Kind of makes “You, Me and Someone Else” a more apt blog name than before too. Weird.


About youmesomeoneelse

A pretty normal couple working their way down the winding and sometimes weird road to having a family

Posted on February 14, 2012, in Uncategorized. Bookmark the permalink. Leave a comment.

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