The first time we knew something was wrong, two weeks before his due date (a torrid time, but that’s for another post), we were told his condition was “microcephaly with simplified gyral pattern.” A bit of a mouthful, the consultant said, so we could shorten it to MSG. Great. My baby has monosodium glutamate, “the silent killer lurking in your kitchen cabinets” (as one website puts it). Three weeks, one birth and another MRI scan later, the diagnosis was extended to “primary microcephaly with simplified gyral pattern plus lissencephaly”. Double great. No one I know has even heard of microcephaly (which purportedly affects as many as two in every thousand people). Primary microcephaly (microcephaly due to genetic causes rather than environmental factors), of which MSG forms a small proportion, affects about one in a million in the UK.
Not surprising, then, that people looked at me blankly. There is no support group, no website, no telephone helpline for children with MSG. We couldn’t reach anyone who had been through it, anyone who could understand.
Recently our physio lent me a book – Handling the Young Child with Cerebral Palsy at Home (gripping bedtime reading). I was confused: he doesn’t have cerebral palsy. That’s when people have a traumatic birth, the baby is deprived of oxygen and the parents sue the hospital, right? Wrong. According to the book’s author, the late Nancie Finnie, cerebral palsy is an umbrella term for any disorder of movement resulting from damage to the brain before, around or soon after birth, including “brain malformations” with a genetic basis. So, although his problems are multiple and “movement disorders” perhaps the least of them, we can at least use the term cerebral palsy to describe him.
I know some people with cerebral palsy – most notably Francesca Martinez, in a series of recent press articles – find the term too medical, too old fashioned. Martinez herself prefers the term “wobbly.” For me, “wobbly” is no more useful when it comes to introducing him to people than MSG: nobody really knows what it means. At least cerebral palsy most people have heard of and have some concept of what it entails. It makes it so much easier when people in the supermarket say, “What a cute baby. How old is he?” and look shocked when I say “Nearly eight months” (running through their heads: weird! Why is he so small? Why isn’t he holding his head up? Why isn’t he crawling around and chuckling and gurgling and grabbing his mother’s hair? Does she realise something is wrong with him?). Now I can say, “He’s nearly eight months but he has cerebral palsy so he seems younger,” and the response is usually “oh bless, what a cutie, well done, good luck.”
It’s not that I want him to be defined by his disabilities, but I don’t want to hide them, a dirty secret, either. Finally we can explain his condition to his great-grandmother. Fortunately she lives in a care home at the other end of the country and only sees him on Skype, but pretty soon, even with her limited viewings, it’s going to become obvious that he’s more than a bit behind. I only hope she isn’t too offended at being kept in the dark for so long, because we were too lazy to take the time to explain a more complicated diagnosis to someone hard-of-hearing and sometimes a bit confused.
So, to us, a label means a lot. Suddenly, we can read books that might help, we can join organisations, we can apply for disability living allowance on the assumption that the person who reads the form will know what we are talking about. But most of all we can talk to people. We don’t have to pretend any more.