In many of the Muscular Dystrophy forums and pages I frequent, I see mothers expressing guilt for passing Muscular Dystrophy to their children.
As a seasoned member of the Sons of Dystrophy, I feel comfortable making this next statement in support of the members of our global chapter
THIS IS NOT YOUR FAULT AND WE DON’T BLAME YOU.
There are those of us who have the condition due to a spontaneous mutation, where the building blocks of life were one lego short. In that case, it’s simply the universe universing. The cosmos is random and unfortunately things happen but no one person is to blame.
For those who know they are carriers, please ask yourself one question, would I rather have my child with their condition or not at all?
A voice I don’t hear very often is that of males who have the condition themselves and have gone on to have a family. That guilt I spoke of above, I’ve had to process that too.
As a person with Becker Muscular Dystrophy, I knew that whatever the gender my child would not have the condition. To explain concisely, Becker primarily affects males, with the condition passed on by a carrier daughter.
As I have a faulty X chromosome, and daughters inherit one X from their father and one X from their mother, there was a 100% chance my daughter would be a carrier. However, as sons inherit the X from their mother, and the Y from their father, if I was to have a son, he would be MD free, the witch would be dead and the spell would be broken. We knew this going in.
See the image below for a more visual breakdown.
It took us several years and much heartache before we conceived. My wife has Polycystic Ovary Syndrome (PCOS), and I have a low sperm count. I have zero shame in admitting this fact and I hope that other men can follow my example.
Along our journey, several doctors told us that we would never conceive naturally. We were referred for IVF – ICSI to be exact. We made an agreement that we wouldn’t let this ruin our life, we would give it a good hard try (pun?) and if it came to be that we wouldn’t have a child, we would sell our flat and travel the world.
I’ve read stories and know personally of people who have put their entire life into having a child, running up huge debts and remortgaging homes. I have no ill feeling towards those who do this but I didn’t want this. If we couldn’t have a child, we’d still have each other.
So we drank our goji berry juice, took our vitamins, ate better and took action when the ovulation window was open, as well as when it wasn’t, whilst we waited for our IVF date.
The date drew ever closer, as we grew more excited, although we were certainly nervous. This wasn’t the way it was sold to us in a romantic comedies, we wouldn’t be hearing a title track by the Counting Crows, we’d just be counting sperm.
A week before the treatment, we discovered we had conceived naturally.
We were elated to discover this. I’m not religious by any means but after all we’d been through, it felt like a true miracle. I was going to be a dad.
I WAS GOING TO BE A DAD!
Learning this, I started to make a million promises about the kind of dad I would be. I’d be fun, silly, write stories for my kid, teach them things I wish others had taught me and despite my condition, I’d be the best damn dad in the world.
I couldn’t wait to meet my son or daughter. Then it hit, if I had a daughter she’d be a carrier, and potentially my grandson would have BMD. I was willingly passing that on. Was that wrong?
We went through the usual process of the 12 week and 20 week scans but these are far from exact, and I had to know if we were having a carrier daughter, or an MD free son.
I suggested we go for a 4D scan, confused about the 4th dimension as I understood that to be time. Once I knew, I could process the reality then focus on my best damn dad ambition.
Thanks to Groupon, we got a neat little deal and booked ourselves in for a scan. As the imaging scan took place, we were treated to a short film of our unborn child displayed a large screen.
And there it was in black and white (and sepia), we were having a girl and my child would be a carrier.
I felt guilt for a child and a grandchild I was yet to know and worried about the eventual conversations we would have but then I asked myself the same question I posed earlier. Would I rather have this child in my life or not at all?
In my answer I found comfort. Whatever difficulties may come our way, she will be loved and cared for by two parents who feel blessed to have her.
There’s also the good fortune that should her child have the condition, they’ll also have my daughter’s lessons of me and proof that life with Muscular Dystrophy is still a life worth living.
As parents we harbour so many concerns about the life we’re providing for our child. Blaming ourselves won’t make this any easier, so please remember, whether you’re a carrier mother or a father with Muscular Dystrophy, this is not your fault.