Doctors know best, that is why they are doctors. To a Ph.D. degree this is true. They are amazing people that save lives. It is important to heed their advice. It is also important to ask questions and search for answers.
We were thrown into a life-or-death crisis when Ian was born. We were too much in shock to formulate questions, let alone understand half of what these doctors were saying. Gigantic medical words and long-winded sentences about his future.
But the short sentences and small words I understood. “less than 5% survival” “catastrophic brain damage” “hospice”.
Those words of acid would make any heart despair.
We went home on hospice and stared at our child. We kept staring at him, waiting for him to die. I guess you could say we got impatience because we starting thinking “Ian is not dying and we can no longer be idle with his future.”
When you have death trespassing at your doorstep for your child you get an urge to start protecting your loved ones. So we started asking questions.
I did not even know Ian had the diagnosis of hydrocephalus until I read his medical records days after we got home. Then I googled hydrocephalus. Oh?! You can fix hydrocephalus with a shunt. It’s a very common procedure, most neurosurgeons will do this. Where else can we go to get this surgery?
Then I started researching every other big word I didn’t understand in those hundreds of pages of medical records. “Intracranial infarction/hemorrhage” Ian had a brain bleed that destroyed his brain tissue.
This sounds like an obviously statement: I did not understand until I took the time to understand.
And it saved our son’s life.
If we had listened to, not just Ian’s first but also his second neurosurgeon, he would have died. I am certain of it. This taught me that Ian needs me to fight for him just as much as Ian has fought to live. I owe it to him to provide every possible chance of survival.
That is why a questioning mind is important. Doctors are very special people, but they do not know all the outcomes of every patient they see; and we should respectfully not hold them to that standard. Everyone has different opinions about diseases, prognosis, cures, alternative treatments. At least just ask questions and do some research, it could save a life.