MHE and baby

MHE? What's that?

Multiple Hereditary Exostosis*

In a nutshell, it's a bone disorder that has been passed down from my mom's side of the family. It never really affected me much since I do not have too many bone growths (fondly referred to as "extra bones"), but it was the cause of some incredibly painful growing pains for me, as well as poor circulation in my legs. I also feel like my non-flexibility is probably due to my extra bones too. For the most part, though, the biggest way MHE has affected me is through my brother.

Of all the people I know (only family members) with MHE, Jacob has it the worst. Physically speaking, it makes him look a little off. He's short and stubby because instead of his bones growing long and thin, they would grow short and stubby. He's had more surgeries than I know of just to get rid of the growths that affect his movement. In the end, he's been through a lot of pain and I'm sure his pain tolerance level is higher than most.

A few years ago I stumbled onto the MHE and Me, a website full of support for kids with the disorder. I couldn't help but get all excited about it! What a great idea! I wish such a site existed when my brother and I were younger!

One of the things that instantly touched my heart was the poetry written by a girl named Jessica. Since I write poetry as my own form of medicine, I felt like I had a special connection to her because she wrote words that I felt like I completely related to, yet she was so young!

Years later (a couple weeks ago), I discovered that Jessica had a blog! She's now a teenager and so there is very little I have in common with her... but for some reason whenever I read her blog, I feel like it's either 1. describing emotions I felt when I was younger or 2. describing emotions I'm sure Jacob feels but just can't convey. I've added her blog to the list on the side (Jessica, if you happen to read this and don't want me to list your blog, feel free to tell me).

Anyway... in recent weeks I've been thinking a lot about MHE again, mainly because I got an email from their distribution list that mentioned a survey that was being done about MHE and babies. It just seemed appropriate for me to fill the survey out.

What surprised me is that the survey had a bunch of "controversial" questions on it. There were questions like "If you were pregnant and were offered the opportunity to test your baby for MHE, would you?" or even "If you knew your baby had MHE, would you consider terminating the pregnancy?"

I've always known that the chances of passing it is 50% and that even if my baby has MHE, there is no way of telling just how much it will affect his life. He may have a mild case of it like I do, or may have a more severe case that causes him constant pain. There is just no way of knowing.

I've also known that some people are more sensitive to the idea of their children having something wrong with them. My ex once told me "Don't worry. When we want to have children, we can use someone else's eggs" because mine were "contaminated" (man I wish I could say that was why we broke up!).

But really? Terminate a pregnancy because of the possibility of having MHE? You have no idea how surprised this made me! It's strange for me to think that I have a disorder that would make some people think twice about having kids. I remember there being a letter sent to the mailing list where a lady was expressing her concerns for starting a family knowing her husband could pass on MHE, and I was surprised then too.

I'll admit, though, that I do not know to what extent MHE can really affect a person. I've read about examples where people are in so much pain that they can barely get out of bed, but even so, it's not an every day occurrence (or at least I don't think it is).

I remember when the topic came up with Michael and I (years ago). I remember being nervous about his reaction and fearing that it would be similar to my ex's. After listening to everything I had to say, Michael thought for a moment before saying something along the lines of "When I think of Jacob, I can not see there being any reason that I would not be able to love him or fall in love with him, so why would it be different for our kids?" I really don't give Michael enough credit, do I?

In the end, of course I wish my children do not have MHE, but if they do, it won't mean I love them any less or that they have any less of a chance to find their soul mate in the future. Michael was right. All that matters is that you surround yourself with people who love you.

* For more information, visit the MHE Coalition website.