Thursday, December 5, 2013

Do doctors discriminate against our children?

A bloated C. at 16 months,
showing effects of
steroid-based ACTH drug

I hope I would manage to summon the same courage and determination to fight the medical establishment as Autumn Chenkus ("Disabled baby denied heart transplant") if the need arose. 
But I doubt I would. My resources are so depleted. Over the years the hubby and I have been forced too often to take on the doctors. So pluck is in short supply.

While our tales of medical arrogance, condescension and discrimination pale beside what Chenkus confronted, here is one from sixteen years ago that still pains us.

As I've shared here in previous posts,  C. began seizing a week and a half after the MMR vaccine. It was days before the pediatric neurologist caring for her then responded to my messages detailing our nightmare. He happens to have been the head of pediatric neurology at a major hospital in our city. But common courtesy wasn't a prerequisite for that position.
Clearly in need of a replacement, we chose one that friends had highly recommended. He proceeded to deal with the rapidly deteriorating situation by trying one drug after another. I remember phoning him with a report every few days and being told to switch to the next one in his bag of tricks. We'd had no experience with epilepsy and were ignorant of the fact that those meds can take up to 2 weeks to kick in. 

Then, in the midst of this, C. was hospitalized with a chest infection which catapulted her into status epilecticus. This really threw the good doctor for a loop.

But hubby and I remained steadfastly clueless and submissive.
For weeks, C. languished, seizing in her hospital,bed, unresponsive to any treatments while this pompous fellow rebuffed our pleas to consult other specialists whom we had located. 

Then he told us that he was going away on vacation. Well, with all that failure he'd just chalked up, he was probably overdue for one. The trouble was he refused our request for a phone number at which we could reach him.  And he didn't even appoint a substitute doctor! He was abandoning our desperately ill C. to the care of nurses and GP's. "Just tell the staff if you need to speak to me" was his farewell to us.

At long last we came to our senses. We decided to switch to another of the hospital's senior pediatric neurologists. At her insistence, our first meeting was a clandestine affair- she chose a remote, isolated wing of the hospital where we'd be undetected. Even there, she was reluctant to accept the case lest she be deemed a "patient thief". She offered to act as a consultant to her incompetent colleague. 

By then we had acquired some gumption and insisted she take over C's case entirely and she finally acquiesced. ACTH steroid treatment was begun immediately and C. was out of status and released from the hospital within days. 

But - as we later learned - those weeks in status epilecticus had done irreparable damage to C.

A few years later, when that wonderful doctor realized that C. was profoundly impaired, she passed her on to a junior newcomer to her department. I guess there is just no fun in treating the hopeless cases. She had already demonstrated how little she understood them and their parents on an earlier visit. When I had told her that I was working hard on C.'s walking skills, she asked "What for? Do you think she'll ever be able to walk over to a toy and start playing with it?"

As I said, she was - and remains - one of the best neurologists in these parts. The trouble is, the bar for "good" is set so low. 

The story of Autumn Chenkus' son shows that discrimination by doctors against children with disabilities is alive and well even today, even in state-of-the-heart hospitals.

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