Some Bad News

To bring all up to date...

Rowie has for some time been suffering from fatigue, and we have exhausted a number of different avenues before going down the heart route. For those that don't know, Rowie was born with Tetralogy of Fallot, a congenital heart defect which involves four issues with the heart. Rowie was one of the first recipients of a ground breaking (at the time) open heart procedure at a very young age, and her heart was corrected - to a degree.

In a sense we've always known that at some stage Rowie would need to have her heart re-assessed. The surgery is known to be generally successful but is also known to require re-visit over a life-span.

So today we finally got our appointment with a heart specialist, who confirmed the worst - Rowie's repaired valve is deteriorating and causing her right ventrical to expand abnormally, which is in short placing a higher than normal stress on her heart - requiring surgery to replace the faulty valve.

It's been a shock to us, despite understanding that there was a good chance it would be required - it's difficult to hear a doctor speaking practically about the procedure, and knowing that it is going to happen. I guess I had hoped that the doc would say "no need for surgery" but it wasn't to be. So... Rowie will be going into hospital in about six weeks (dates will be posted here when we have confirmation) and will undergo a valve replacement, using a donor human heart valve. They will use a donor human valve (as opposed to a synthetic, pig or cow valve) for purely practical reasons - it's likely that Rowie will undergo this type of replacement every twenty years or so, and the doc explained that the procedure will likely improve such that they may be able to replace the entire valve without invasive surgery in the future. The technique is very new right now (it's called the Bonhoeffer procedure - non invasive)

We're encouraged by the statistics - 4% chance of failure regarding the actual valve replacement, and 5% risk of complications brought on be the procedure as a whole... those are pretty good odds. The long term prognosis is also good - essentially back to normal within 3 months. All good news and I know for sure that Rowie is keen as anything to get it done and get on with life... she's been so couragous since we found out, I'm amazed.

I will use the blog to keep all updated.