This has been a difficult post to write, have been re-writing this for the last 5+ months now….
On the day Tracy and Luke were due out of hospital, one of the paediatricians came to give the little fella the once over, apparently this is quite common before they let people out of hospital (a formality, or so we thought). During the exam she spotted something with his eye’s – his iris were “keyhole” shaped. We hadn’t noticed, as he’d been spending most of his time with them closed.
As she was quite junior, she asked the senior paediatric registrar at Simpson’s to take a look. He was great, as we were both getting a little panicked at this point, quickly identifying that Luke has is something called a “Coloboma“, and that we’d need follow-up consultations with specialists who would be able to tell us more. He also suggested that we avoid doing our own research on the web, due to what we might find.
Once we got him home, there followed a hectic couple of weeks just before Christmas, doing the rounds of almost all the hospitals in Edinburgh. Getting Luke tested and screened for the various conditions that Coloboma can be a marker for. Some of these sound really quite awful (he was right, we shouldn’t have looked). It wasn’t a fun time for us, but is was made bearable by the medical personnel we met during this particularly trying time. Everyone was very kind and helpful, answering our questions as fully and honestly as they could. The NHS comes in for a great deal of stick most of the time and it’s only at these difficult times that you realise the quality and dedication of these highly trained people!
On 18th April, Luke had his last consult with the genetic specialists at Sick Kids, with the comforting news that there’s nothing for us to worry about in terms of “syndromes”. This (hopefully) means that Luke only has to deal with the actual Coloboma and nothing more serious.
Coloboma can range in seriousness, from those that are purely cosmetic, impacting just the iris, to the more severe impacting the retina and optic nerve, which impair vision. Luke has the latter.
Dr Fleck and his team at the Eye Pavilion have been, and will continue to monitor his condition over the coming years, but there isn’t a great deal they can do. After the first examination, it was confirmed that Luke’s Coloboma does impact his retina (he’s missing an estimated 50% of his Macular – the bit that you use to do most of you seeing).
As the above illustrates, you notice his condition most when you take photo’s. It’s quite hard when you see a large area of white, knowing that he probably didn’t see the flash, but there is some “red eye”, so he’s going to be able to see something, it’s just a question of how much. The lower half of both eyes that have the problem, which means that it’s actually the upper part of his vision that’s missing. This is positive, as it means that Luke should be able to walk around without too much difficulty. We’re using the analogy of wearing a pulled-down baseball cap to describe to people what it’s like for Luke.
Won’t know much more for now, we’ll have to wait until Luke’s a little older and more able to respond to the testing before we know the full extent of what he can / can’t see. Hopefully, by the time he’s about a year old, we should have a good understanding of his sight range and what this will mean.
So, there you have it. The reason why we’ve added Visual Impairment Scotland to the blog roll links.
Our little man, along with being a Scotsman with English parents and not being born in Yorkshire, is going to have to cope with potentially quite severe sight problems as well.