This isn’t ‘routine’ for me.
Now I get it. You’re busy. You’re running a clinic. You have a lot of patients to see so what is another on your long list of patients to see today.
‘Chloe’. An hour and half of waiting with a toddler and finally we’re called.
Finally.
This is the first time we are meeting our ENT. Referred through the public health system here in QLD. And I know, you are pushed to the limit Dr. So many people needing so many things from you.
But would have it been so difficult to introduce yourself?
Perhaps shake my hand? Say hello?
That little introduction that takes all but a second lets me know that you are interested in my daughter and that you care.
But you don’t.
We follow you down the corridor into a consulting room. Chloe loves these rooms. Loves to destroy these rooms! I don’t know what it about these four walls and the big grey door, but it turns her into a little hyperactive monster! Those drawers. Those tubes on the wall. They’re there to be broken right?
We sit down. I’m nervous. I’m always nervous in these appointments.
I know I will have to explain my Chloe. I will have to explain Smith-Lemli-Optiz syndrome. I will likely have to explain her heart defect. I will have to explain everything.
As I sit, you read the report sent just last week from our Sleep and Respiratory Doctor. It’s two pages. I haven’t seen it. You are skim reading. You haven’t read the referral from our paediatrician. You know nothing about Chloe. You haven’t read the email our cardiologist sent, you pretend to know nothing about it.
You’ve read NOTHING about Chloe.
We are already an hour and half late for this appointment, and you couldn’t spend an extra few minutes before calling us to check her file? Just so you know her name at least? And any other issues?
Nope.
Nothing.
We sit. We wait.
I pour Chloe’s pediasure hoping it will distract her. I get potato stix. I get out her colours.
You still haven’t made eye contact?
And who is the other person in the room? He seems nice! He’s probably a fellow? A learner… what are you teaching him? To ignore your patient, that they are just a number to you?
I give you a quick run down on SLOS….
Metabolic disorder… cholesterol…developmental delay…blah blah blah.
I wonder if you are listening or thinking about lunch? I’m thinking about lunch!
Thank goodness I had that coffee before getting in the lifts.
The consult continues. You listen, but you are a ‘busy listener’… writing on paperwork for admissions to hospital for Chloe. Without looking at Chloe, you agree with what I’m saying and the other doctors about removing her tonsils. You say they have to go. You try to look at Chloe.
Funnily enough, you ask me before what she is like with examinations. I’m thinking of course she won’t like it, she doesn’t know you, you haven’t talked to her or engaged her. My daughter is a good judge of character! You try to look in her ears and mouth, and up her nose. It takes a minute or two.
Me, “Who will be doing the surgery? You? Or another doctor?”
Dr, “All our registrars do the surgery.”
Me, “Oh, I’m not comfortable with that.”
Dr, “It’s routine. They do 30 of these a day.”
“It’s so routine they do 30 of these a day on kids with a half a heart and rare genetic syndrome?” I ask.
**Awkward silence**
I want to scream at this doctor and her blase attitude. Surgery is not routine for parents! It doesn’t matter who you are! We may have done this path before, pre op visits, signing consent forms, PICU admissions… open heart surgery. But it is still not routine for me!
This is my daughter. My miracle. She’s not a number. She’s not just another patient to me! This is not routine. I wish more doctor’s would understand this!
Handing her over to surgeons, who see her as just another number on the 30 routine surgeries a day… on what is clearly seen as an assembly line, does not fill me with confidence! At all. Even a bit.
Knowing she is under an anaesthetic, knowing you have her life in your hands… you should know her name! You should know her history! She’s someone’s world! She’s my world.
Chloe's story 