Friday, 25 November 2011

Not a Good Friday

Exactly one year ago, the Paediatrics team gave our 2 day old daughter a diagnosis of Achondroplasia. A passing comment the previous day by a midwife about "short arms" had been playing on my mind, so after I got Ollie's brother into bed that night, I hit Google. I was, at least vaguely prepared for what was to come, but my wife, who had been somewhat cut off from the real world for three days, was completely unprepared. Hitting the odds of 1:25000 isn't fair on us, or on her, but the main way I have come to terms with Ollies condition is to accept that its not predictable, preventable or treatable: we just have to get on with it.

The next few weeks were a whirlwind of appointments, scheduling for appointments, Googling before appointments so we had a background knowledge of what would be discussed, family visits, banks, estate agents (we were hoping to have a third bedroom before she was born) the sleep depravation that comes with a newborn, and the emotions that come with finding out that your child will be "different". At that early stage we skimmed the RGA and LPA websites for information, and pretty much everything we found was positive, and reassuring. The potential health problems associated with Achondroplasia were flagged up calmly and we have been watching Ollie like a hawk for signs of raised intracranial pressure, loss of limb mobility, sleep apnoea, (there's a long list). The possibility of decompression surgery worries me greatly, although I see from OMIM that it's actually quite rare, and it's probably just my own fears that make it seem to stand out. I have turned Ollie into a bit of a science project. Its something of a coping strategy I guess but I find it's helpful to understand exactly what's going on in as much detail as possible, and I'm sure she will have questions as she gets older.

Emotions are funny things. They come and go. As a Father and Husband it was my job to hold everything together and be calm and practical for everybody else. For the most part I think I managed that well, but there was a point about two weeks in where everything caught up with me at once. I was eating a toasted cheese and ham pitta at the time, and it was like I had suddenly been hit by a truckload of "I don't want this for our daughter" with a special delivery of "it's not fair".
I sometimes find it hard when we take our son to the playground and I catch myself looking at little girls with long skinny legs. I suppose I should be careful not to get myself arrested, but it's nothing sinister, purely a tinge of whimsy and regret. And in any case, I'm pretty sure that Ollie already has more character than most of them!
We have been incredibly lucky in that we live near the John Radcliffe Hospital. We have had care from the most incredible team of specialists, and I am in awe of them- particularly our Paediatric Consultant, our Orthopaedic Consultant, and our Physiotherapist, all of whom have dealt with Achondroplasia cases before.

Over the course of the year it has become clear that we have dodged many bullets. I loved watching my son grow up, but it just happened. Knowing that there was a potential problem for Ollie meant that I paid more attention to how infant skills develop, and it has been fascinating. So many skills we take for granted as adults are reliant on underlying skills like sitting and standing: Early years developement in Achondroplasia can be a bit slower, low trunk strength means that while other children are sitting up and learning to use their hands, Achondroplastic children may still struggle to sit at all.

Nobody appears to have mentioned this to our daughter, who started cruising along low tables and sofas over a month ago, and is charging up and down the house on her toddle truck as I type. The determined little bugger is ahead of many of her average height peers. I could not be prouder as a father, or more more in love with her cheeky, gummy grin.
There will be a part 2 to this post later, but I am going to have to be very careful about the wording...

1 comment:

  1. My best friend was born pretty much without a left hand (what little was there was terribly deformed). Certainly not the biggest handicap but very visible and potentially embarrassing. But her parents didn't see it as a tragedy and she got the seeds of her self esteem from them. It didn't limit her physically nor isolate her socially growing up. I think that's because she wasn't uncomfortable with it. That made it easy for her to deal with kids or adults who stared. She didn't take offense, addressed it with humor, and I never saw anyone uncomfortable or afraid to be her friend for long. As an adult, I've seen her reassure mortified parents and allow their children to touch and examine her hand when she noticed they were curious. It's just such a wonderful approach to life that wipes out barriers and gives everyone involved dignity and respect.