Pediatric cardiac surgery is one [specialty] that is really . . . glaring in terms of differences in outcomes. There are enormous disparities in outcomes. Message one is it’s your child . . . and you should be very confident in asking important questions.
Parents should ask, ask, ask, ask, ask all the time. How many do you do? Who is on the team? What’s their training? Objectively, what’s their performance?
As parents, this seemingly obvious statement strikes a cord. We know that we love our own babies more than any other person on the planet, and that this love puts us in the best position to advocate for our innocent children.
Yet when we are thrust into this foreign world, when we are forced to contemplate the mortality of our babies, we can feel completely overwhelmed and in certain respects and in order to survive, must abandon our sense of control.
But this doesn’t mean that we should relinquish our roles as our babies’ advocates and implicitly trust the figure of authority in front of us to be the best person to care for our children.
In fact, our children need us more than ever, and we need to muster all our energy to continue fighting for them. This moment in time, while a mere blip on our lifelines, is, for our babies, pivotal, life-altering and determinative of their futures. It can define their capabilities, happiness and healthiness. It may make the difference between a life spent bed-bound, on a breathing tube, to one spent on the courts, fields, slopes and even in the skies.
But the problem isn’t just one of confronting our fears and overwhelming desire to just trust our doctors, it’s also one of a lack of information.
In this Age of Information, we increasingly rely on the internet for answers to our questions, regardless of topic. But when it comes to researching the quality of care and abilities of pediatric cardiac care teams, and individual doctors on those teams, there is absolutely nothing available to us parents.
There is nowhere to search the mortality and morbidity rates of a particular surgeon, or how long your cardiologist has been in practice, or even how other parents rate a physician’s bedside manner. Nothing.
Should we really have to resort to Angie’s List when it comes to determining who is the best surgeon to literally hold our babies’ hearts in his hands?
This must change, and we want to change it.
If we get our funding, we will create a rating system of individual doctors utilizing not only objective, quantitative data but also the feedback of parents whose heart warriors have been cared for by the particular doctor.
We will work with doctors to ensure that we are accurately and fairly representing their experience and abilities, and then summarize the data so that parents have a tool whereby they can compare doctors against one another, and on that basis, determine who is worthy of determining our babies’ future.
If you would like to help us make the Doctors’ Ratings tool a reality, please consider donating here.