Monday, May 7, 2012

The Lottery

I've stolen the title for this post from friends who have recently experienced a devastating loss in the genetic lottery (Read here and here). My heart goes out to them, and while our own genetic shortcomings are nowhere near as traumatic, I can certainly relate to the confusion and guilt and overwhelming sadness that comes with the realisation that procreating isn't going to be as straightforward as you imagine it will be. Seriously, I have no idea how there are 7 billion people on Earth, because it all seems so freaking difficult right now.

With the Pandora's box that we opened on a random Tuesday a few months ago, came a new language, and a whole new set of things to worry about (because as parents, we simply don't worry enough...). Learning 7 months into a pregnancy that you unknowingly passed on a potentially debilitating condition to your firstborn isn't the happy news you hope to hear at that point, and I spent an extremely anxious few months waiting to see if my little BITO was also affected. We have yet to have it confirmed by professionals, but for now it looks like Charlie's eyes are fine (fingers still crossed). We always said that if Charlie escaped any genetic mishaps we'd consider having a 3rd child. It was always in the plan, but that 25% chance of ELeP put a shadow over any dreams we had for a big family. The Geneticist we consulted recently was somewhat helpful in this regard, but we've learned that genetics are a murky business and it really is like looking for a needle in a haystack. I won't bore you with the technicalities of what we have been told but at this stage we have more questions than we have answers. When it comes to future babies, we need to wait until we know more about what has caused ELeP in Josh.

I want to wait, but I can't stop thinking about it. Well-meaning friends and family have told me I shouldn't worry about it for now - there are bigger things to worry about after all. Rest assured, I am still worrying about everything else, but being a very capable multi-tasker, I'm managing to worry about it all at the same time. We've been told we have three options, something to think about until we're ready to think about it some more. We can spin the wheel and take our chances again, knowing that J got off lightly and baby # 3 could have a more serious case of ELeP (in other words, be born blind). This condition doesn't just cause a vision impairment, but an obvious physical deformity of the eyes as well. It's not immediately apparent what is different about J's eyes, but they are definitely different. I've seen some pretty frightening images of others with more serious cases of the condition, and they will haunt me every time I think about how bad it could be. The good news is that, while it won't get any better and his eyesight may deteriorate over time, the deformity itself isn't progressive - a small mercy. But if we took our chances, I'd never forgive myself if we had another baby with ELeP, I couldn't, in good conscience, take such a risk.

We've also been given information on "Assisted Reproduction" - IVF followed by screening of embryos for specific genes. It seems crazy given how easily we reproduce, and it opens up some ethical issues that I'm not entirely comfortable with. While I don't like option A, I like the idea of a "designer baby" even less...  It may be the only way we can have another child that is biologically ours, without the risk of passing on ELeP, but there are so many, almost too many, what ifs in this scenario. Like, what if we end up with twins!? Or what if we go to all this trouble and end up with something else going wrong!!? Is it worth putting ourselves through the physical, emotional and financial toll of this process when we already have two awesome little boys...?

Option C is the least appealing, and that would be admitting that we are done having babies. Our Charlie is only 9 weeks old, but he has been so delightful that I can't bear the thought of never experiencing this again. My life is full, and our family is more than I had ever hoped for, but I'm not sure that I can say it's complete. On learning that we might have to call it quits prematurely my heart broke. If we made this decision, no matter how right the reasons, I would grieve. I am immensely grateful for the two perfect children I have, but it's because they make me so happy that I want more. Is that greedy? Maybe, but the heart wants what it wants.

1 comment:

  1. That is a hard choice. I am so happy to here that Charlie is alright (fingers crossed) and hopefully with the help of the specialists you can help Josh. Hopefully one day soon they can really help him and he will be able to drive more than just the toys :)