Star stuff...

Over the past week and a bit, I have spoken to three other TOF parents who are a good bit earlier in their journey than Freya and I - well one is still a TOF parent-to-be - and it has really brought home to me just how far we have come in the past 4 and a half-ish tears since Christopher was born, and we first discovered what on Earth "TOF/OA" was...

TOF/OA, or Tracheo-Oesophageal Fistula and Oesophageal Atresia to give it its full name, is a rare (roughly one in 4000 births) condition where a baby's oesophagus is not joined up (the atresia bit) resulting in a dead end in the top part and having the bottom part that connects to the stomach attached to the trachea (the fistula bit).  Remarkably enough, the operation to fix it is usually surprisingly straightforward (assuming you're a paediatric surgeon!), but it can come with a variety of other related complications.  Christopher was born TOF/OA (and with a large hole in his heart), but had, I suppose, the relative good fortune to be born within a short ambulance ride of one of the leading specialists in the repair of this condition.  So it was that he had  "keyhole" surgery to join his oesophagus and fix his trachea at two days old. 

The operation was a great success (as was the later one at Yorkhill in Glasgow to fix his heart), but it has been (to paraphrase the Grateful Dead) a long strange trip since then.  Only in the past year have things really started to go reasonably smoothly, and Christopher, Freya and I have all spent way more nights in the Sick Kids.  

This, however is not the main thing that I am thinking of at the moment - I am more focussed on the positive side of Christopher's experiences.  The thing that shines out more than any other to me is the Wee Man's confidence - not much fazes him, he has never been a clingy child, and he is well at ease in the company of adults and will happily chat away, quite the thing.  I think that this is likely due, at least in part, to the amount of time that he has spent in hospital surrounded by doctors and nurses, and not always in the company of mummy or daddy.  Don't get me wrong, if there had been a tick box offering TOF/OA as an option, there is no way I or any other TOF parent would have chosen that, but I am relieved to see positive aspects of the ordeals that my beautiful, caring wee boy has been through.  And compared to some TOFs, he has had a relatively straightforward journey.  

I hope with all my heart that all of the other wee TOF children can reach the stage the Christopher is at now - able to eat most of the things that other children can eat at his age, though we still need to make sure that he chews carefully and drinks between bites etc - mealtimes will probably always be a wee bit different Chez Rennie, but that is ok, and I hope that other TOF parents can take hope from my brave wee lad.  We are all made of star stuff, but to Freya and I, Christopher shines brighter than most...