Recently I received my first-ever hateful comment. I’ve been lucky that almost everyone who has reached out to me by commenting or emailing me has been supportive of our decision to move forward with IVF despite the fact that my Osteogenesis Imperfecta could be inherited by my offspring. This is what the commenter wrote:
So you have OI and knowingly used your eggs to create embryos that would have a 50/50 chance of a potentially devastating disease? And CCRM went along for the ride. I’m speechless.
I wrote this person back and haven’t received a reply, so not sure if she was a troll or is simply choosing not to respond. I sent the comment to my trash instead of approving it, but I want to address it in a post in case others out there are thinking the same thing.
I have Osteogenesis Imperfecta. I have had about 12 fractures, mostly occurring my first few years of life. In my family, our bones are most fragile when we are newborns. I have knee problems and have had four knee surgeries. I wore a lift on my left shoe as a kid because femur fractures affected my growth plate and made one of my legs slightly longer than the other, rendering me very clumsy and prone to falling. My joints pop and crack when I walk sometimes. I became fragile again while pregnant with my twins and hurt myself quite badly, so my days of adding to our family are over (I had my tubes “tied” during my c-section). I need future surgeries on my right shoulder and both legs to improve my quality of life. I spent some time in doctor’s offices over the years, but much more of my time outside in the fresh air, doing what normal kids do. All of these things are true, and they suck, and OI at times has been a bit of a burden.
But you know what? I also grew up pretty normally, playing softball and basketball. I ran in P.E. and played with my friends after school. I rode my bike, swam constantly during the summers, and played tennis. I graduated high school, earned my college degree, fell in love and got married, and turned my attention toward having kids. We met with no less than three geneticists to discuss the impact of OI on our future children. We understood the risks and took the leap. I knew that because my quality of life growing up was so good, my kids would have a similar experience. My mom may not have let me play soccer or roller skate (pretty much her two big no-no’s), but I would say my childhood was pretty great. There has been nothing “devastating” about my own experience with OI.
Furthermore, at this point I have met a LARGE number of families who have MUCH more severe OI kids than what I personally have experienced with V&L or myself, and guess what? Their kids’ quality of life is pretty great too. They may spend more time in a hospital like I did, but they feel joy and feel love from their parents. I have witnessed it personally. And I am 110% sure that not a single parent I have met has thought twice about bringing life into this world, despite the risk of passing on this disease. These kids are a gift, no matter how severe their condition. And unlike when I was a kid, there are minimally invasive treatments available to improve quality of life. When I was little, bone rodding was a very invasive surgery with a long, painful recovery time. Nowadays, it’s the complete opposite. When I was little, there were no Pamidronate infusions like my girls receive to improve bone strength. These two therapies have turned even severe OI kids into walkers and runners, and research continues.
OI is part of who I am, but not all of who I am. I am also a wife, daughter, sister, and friend. I am also infertile, and wanted a baby more than anything just a few years ago. I’m guessing if you are reading this blog, you are likely going through infertility or are close to someone who is. So you are probably familiar with that deep yearning in your heart to expand your family. That yearning consumed me once we decided the timing was right to have a child. I really didn’t feel at the time that mild OI was any reason to quell that yearning and remain childless. And I’m so glad that I made that decision, because my children, OI or not, are incredible.
I think this commenter is also trying to say that CCRM should have stopped me from using my own eggs because of this mild condition. Are they expected to know about and test for every possible gene defect? I volunteered the knowledge that I have OI, but I could have just as easily decided not to share that information. What about parents who carry a gene for cancer, for heart disease, for diabetes, for high blood pressure? Technically, these could be potentially devastating diseases as well. Does this mean that no one should procreate, that the human race should just end because we are all genetically flawed? Of course not. A genetic counselor at CCRM sat down with us, explained the 50/50 risk, and left it up to us to decide if we were prepared to welcome a baby with OI. Of course, we had no idea what we were getting ourselves into, but in hindsight I wouldn’t change it for the world. We could have screened out OI by sending our embryos for testing in Chicago, but I chose not to. What if my parents had had that option? Would they have passed on me? I believe this is a VERY personal choice, and I don’t judge anyone who decides to screen out a serious medical condition, but I just couldn’t do it. And I am glad.
What do you think? I will not be offended by your responses, but am curious to hear your thoughts. The commenter left an email address, and it is firstname.lastname@example.org (she listed her name as Hanna).
Rant over. My next handful of posts will focus on getting caught up!