September 03, 2010

Mission impossible

It is April 1998. Segev is at home. His first month of life was in hospital, there was no diagnosis, I had refused the drugs which will sedate Segev.  Unable to work for almost two months, some parents, unbeknownst to me, took up a collection to help pay for my daughters kindergarten. The hospital refused to order an MRI and finally we decided to try to go it alone, at home. 

Segev would actually start to develop hand and eye coordination but still had to be fed through a naso-gastric tube. He had some scary large seizures throughout the day but managed to sleep about four to five hours in the evening without them. Waking again at twelve thirty at night to start a new day.

He hadn't had his first episode of central apnea yet, he could sit in a baby carry-seat, lift his head a little and turn it.  And rarely he could actually reach for a mobile dangling in front of him. 
One evening he was out of sorts, already we could distinguish some patterns with him, he was six weeks old. There was low grade fever during the night. The next day everything was gone. No more hand movement. No more seeing. No more gurgling noises. No more sucking. All in one magical moment, taken away like some dark angel had decided to cut him low...

I am back at work, driving to see patients about an hour and a half out from home. My cellphone rings and it is our pediatrician. He tells me that they took Segev's EEG to the chief neurologist for a consult and the conclusion is that Segev has Hypsarrhythmia, a fatal type of epilepsy I am told, while still driving. He tells me that there is only one known treatment that can have any effect at all and that is to give Segev massive doses of Steroids and ACTH. 
How massive I ask. About ten times what you would normally give an adult, he responds. I see. I don't know if it was because of a long pause on my part, perhaps running several scenarios through my head but in any case he spoke rather tersely, "you realize", he said, "that every hour you wait brings your son closer to death?"  

Wouldn't it have been a funny story if then I'd run into a tree or something, from shock? But no, no accident. I responded with this; "Do you realize Doctor that you are putting the weight of the world on my shoulders all in one moment? And without any certainty whatsoever I must right at this moment decide on a treatment that it in itself could kill him?"   
"It's up to you" he said. Yes I know it's up to me, I wish to God it weren't. I felt I was panicking, I wanted to give in and tell him, yes yes you are the doctor, but something stopped me. Instead I did just the opposite, saying "I cannot make an instantaneous decision about such a matter without knowing more about it." 

I didn't drive home, instead I drove to my friends house, where there was an internet connection. I got there around 5.30 pm and finished my research at one thirty in the morning. I explained to Segev's mother that the treatment was only successful in 3% of cases and that all other children died, some because of the treatment. Three percent, to those at all familiar with medical research protocol and statistic analysis, is insignificant. My son had a 97% chance of dying, either from the illness if the diagnosis was correct or from the treatment if it was not. To the parent of one of those three percent the treatment is of course a miracle and a Godsend. To me it wasn't and I did not feel I could consent to such a procedure.

That night we did not sleep and I thought about how could  I solve this, how could I save my son after all? 

The treatment sounded to me like plain luck but I realized I am no expert; intuition and study will only allow you to reach so far. Searching for an answer I recalled that I had been given the name of an old timer pediatric neurologist by someone, that he had heard about years before, regarding some difficult cases. I wrote everything down back then and after a little while found his name but didn't know whether this "old timer" was still alive and if so whether he still received patients and even where he worked.
That morning around eight, Friday morning,  I began calling hospitals. The first hospital I called: "Pediatric neurology department please. Hello I was wondering if you've heard of a Professor Garrat?" The response was immediate, "yes, yes of course. I happen to have seen him go into his office a little while ago."  Stunned silence on my end. "He works there?" Well obviously Eric, you idiot, didn't you hear what she said? I thought perhaps I had imagined her saying it after a night without sleep, a night where the certainty of my son's death was at least 97 percent, the worst night of my life.
She continued, "Yes of course, he is head of the department. You're lucky if you want to speak to him because he never comes in on a Friday, it's his day off." Stunned silence.

I speak to the doctor and explain. He tells me that he only came to settle some paper work since he is going on vacation and at eleven O'clock he must leave for the airport but, if I can make it until then he will see me due to the severity of the case.
It is eight thirty in the morning. The hospital is between one and one half hours drive away depending on the traffic. Plenty of time. "Of course I'll need to see the EEG." he reminds me. "The EEG was done at the local hospital" I explain, "they don't release a copy except for the attending physician". I spoke aloud but it seemed to me as though the conversation went on in my head. "I'll get the EEG and get to you in time, Professor." I hear myself promising. 
The EEG department is a half hour drive away. I do the calculation; eight thirty now, back home at nine thirty, pick up Segev and his mother and arrive at hospital around quarter to eleven. No problem, we can make it.
I call the hospital and ask for the EEG department, already thinking of how I'm going to swindle a copy out of them."That department does not operate on Fridays" the hospital switchboard tells me. I say nothing. "Hold on a second, I'll try to transfer you anyway" she says.  I have a problem picking up my stomach off of the floor. I can feel the frustration brewing, anger or despair soon to follow. Someone answers the phone. I recognize the voice, it's the EEG technician, I can just see his massive head of wavy silver hair. I tell him the story. I tell him how grave the situation looks and the limited time frame I have. "You're in luck, I just happened to come in on my day off" he says. "You know I cannot give you a copy of the EEG, right?" he continued. Yes, I say. "Be here in half an hour and it will be ready for you." 

I speed to the hospital, through the winding hills of Haifa city streets and on the way back contemplate the following scene: I am being dragged along the floor as i hold on to the professor's pant leg, waving the EEG with my free hand. A security guard begins clubbing me as the good Professor makes his getaway to the airport never to be seen again. But the matter is most grave (interesting word, grave) and I return home to pick up Segev and his mother. I am certain that the neurologist must see Segev to correlate the findings of the EEG. I am traveling 140 kilometers per hour but I am an excellent driver. We arrive at the parking area at 10:45. We jog to the department and are, still jogging, pointed automatically to the Professor's office.
I enter the office without one word and place the EEG rather roughly on his desk. He peers at the first page. I sit down, nearly out of breath. The second page. The third page and the fourth. Thirty seconds have gone by. "Who is the idiot who said your son has Hypsarrythmia" he says. "Ridiculous". I am only too happy to concur yet still feel incredulous as well as so, so very relieved.

Mission Accomplished.

1 comment:

  1. I'm glad you took the initiative to see the nuerologist before proceeding with the high risk treatment. I see you as an incredible father.