Some days just empty out my reserves of optimism and happiness and fortitude...
...the type of day that stretches my 'cope-ability' to its almost-breaking point...
...when I feel that my heart will finally break ,my mind will finally fracture,my soul will finally wither,pushed over the edge not by any big crisis of love and death that comes to us all,but by the thousand cuts of everyday anguish...
...and which leaves me wondering about the futility of what we do in emergency/primary medicine...and how we can ever really help our patients have a 'good' or (statistically) 'normal' quality of life in spite of themselves and the evil hand that fate or G-d or happenstance...or maybe just plain old unadulterated genetics...has dealt them.
YummyMummyNurse was working a shift today,back from maternity leave.
She is smart and clever and well educated in the strange English way that is based on lots and lots of book learning and tutorials and empowerment seminars and human-rights-driven protocols and "group problem solving dialogues" , but has little to do with ever actually seeing or working with any actual people with real and complex health issues.
Her office is unfortunately next to mine.
Can you help me with this child I'm seeing ? she asked.
Well...her dad says she has 'MF1' disease...and I haven't heard of it before...have you?
...she asked,in that tone of voice that suggests that she doesn't really expect me to know more than her...since I trained in the Jungle...
"Ummh...nope...can't say that I have..."
Well...her dad brought her in because her face is all swollen...and I think it is but I'm not sure...
"Okay....well...lets go and look at the child and talk to the dad "
Now there was a rule of thumb in paediatrics when I was training,(in the days before accessible DNA testing), that suggested the following:-
'Normal Looking Parents' will probably have 'Normal Looking Children'
'Funny Looking Parents' will probably have 'Funny Looking Children'
But that if you ever saw 'Normal Looking Parents' who have 'Funny Looking Children',then you should have a high index of suspicion for some sort of congenital health/medical problem that may hither too have been missed...or which the parents know about but might not tell you about during the course of a brief ER type consultation, due to embarrassment or disinterest.
We went into my colleagues room.
The father was sitting holding his four year old daughter on his lap...she was 'well presented' as were her 2 brothers...but she undoubtedly,unfortunately,looked a little odd and all sorts of alarm bells went off in my head.
My heart sank.
"Hello gorgeous..." I smiled at her..."So...my name is Lucien...whats going on then dad?"
Well...we're here on holiday...and I think her face is swollen...and she has this illness called MF1 and I'm just worried about her...
"Okay....lets have a look at you then Miss...."
She quite happily let me pick her up and examine her.
"Okay then...there we go..." I gave her back to her dad.
"Are you sure the illness she has is called 'MF1' and not 'NF1"...?"
I dont know mate....I think its "M"....but I might be wrong...
"Jah....I think she has a syndrome called 'NF1'...or neurofibromatosis type 1"
Okay then mate...you probably know better than me.
Its just so sad.
He clearly loves her...she clearly loves him...he was clearly worried enough about her to bring her in to see someone...but he doesn't even know what her illness is called.
Fortunately the on-call paediatrician knew all about it...and since we were unable to distinguish between her usual/disease mediated physiognomy and the swelling that was worrying her father...agreed to see her.
They had no car.
They were going to catch a bus to the hospital as he didn't have enough money to pay for a taxi and she didn't warrant an ambulance.
We paid for the taxi.
Fortunately I had some emergency chocolate in the boot of my car.
It didn't stop me worrying about the child...and of reminding me of all the children with rare illnesses I have seen...
...fortunately I have even more emergency chocolate in my bedside cabinet.