It’s Addison’s 3 month birthday today, so already, you could say she has defied the odds. I’ve been doing a lot of thinking about that lately. And of course, being a nosy journalist, researching on the internet has turned up plenty of stats about pediatric heart transplant patients.
Some of these numbers are downright depressing and quite hard to look at as the mother of a transplant baby. In fact, I remember reading through a few of those same studies when Addison was in the ICU, fighting hard every single minute of every day. At least I am able to be a little more objective about it now.
When it comes to heart transplants, it’s a pretty short history. The first heart transplant on a child was done in 1968. The first few transplant didn’t really go all that well so they weren’t done too often. It wasn’t until 1985 with the introduction of new drug therapies post-transplant that it started becoming a successful and viable treatment option for sick kids. So really, it’s been less than 30 years of data. There are now approximately 300-400 pediatric heart transplants done around the world each year. That means the pool of cases for stats is still pretty small.
On the surface, the 10+ year survival rates for heart transplant kids may not look particularly promising. But as we all know, numbers can be twisted and turned to give all kinds of results, especially when there aren’t that many patients in the study. Once you look closer, you start to see a marked difference between stats that take into account transplants done over a longer period of time (going back more than a decade), and stats that use only the most recent cases. Now, almost all heart transplant children are surviving past 10 years. Many are going on to university, getting married, having their own kids. It’s a dramatic change in a very short period of time. Just imagine the future for today’s patients, such as Addison.
And then I have to stop and remember what Aaron kept saying to me when we were in the hospital at Addison’s bedside, where she celebrated her 1 month birthday…the statistics don’t matter because there is only one number and one patient we need to worry about.
Happy 3 month birthday baby girl!!
Elaine, Aaron and Addison