“…hmm, that can’t be right,” he said, as he stared intently at the LED display.

I watched as the doctor passed the wand slowly across my son’s chest. Again. And again… and again… I have seen this procedure many times before and have come to expect the multiple passes and frustration…today was no exception.

“My readout device is malfunctioning…I rebooted it, but…hmm,” he said, this time with a cell phone in his hand.

Our seizure control device was implanted in June of 2007. Less than 3 years ago. Actually, I can’t even remember the exact date. Trauma can do that. But I remember the feeling of dread. And I remember that my doctor wouldn’t look at me that day as he shuffled the pages of our EEG printout. And I remember the words “I’m so sorry…” once again filling the room and just hanging there as the gravity of the situation came over me.

That was one year after our major brain surgery. But, as I have come to realize, seizures are truly the gift that keeps on giving. So right then, in an emergency surgery, all alone, in a hospital thousands of miles from our home, this device was implanted to control an unexpected recurrence of seizure activity in the T4 site… the exact opposite area of our resection a year earlier in T3. When faced with extremely limited options, I guess you take what is offered.

And, like many things in medicine, whether the solution works well or not, you are expected to be grateful and just give thanks that you are not dead. 

And, in honesty, we were grateful that we were not dead. It just seemed like with this device there had been a compromise made without much chance for dialogue. And as can be expected with epilepsy, we continued to have minor seizure breakthroughs. Not life threatening anymore…just the kind of reminder that never let’s you truly forget the haunting reality of severe seizure disorders. But now, we had the security of our implant, a technological security blanket of sorts. And to some degree it is a miracle. You have a seizure, you wave the device over your chest, and that’s it. Nothing to worry about. Except for that troubling image from the office.

I guess because I am a designer, I could never get past the image of my doctor passing his readout device over my son’s chest again and again. “…let’s try it again,” he’d say. “Roll on your side, remove that heavy shirt…hmm, ok, I think it’s connecting… hmmm, roll him over again…” But what bothered me the most, was that unlike my doctors’ readout device, my device had no feedback mechanism at all. There was no way to tell if the implant received my signal or not. And I never saw any evidence that it did. But, the company probably thought that it didn’t need one. A person without any cognitive impairments can tell you that the device is working because they can feel it. But many people who have seizures have other disabilities, as well. And, when you have a seizure you are often times unconscious. And… what about the many, who like my son… can’t talk at all? 

I wrote a letter to the company detailing my concerns… because after all this was a seizure control device.

That was two years ago. I am still waiting for a reply. But last week, after less than three years of working life, the readout said “Low Battery.” And interestingly, when contacted, the company suggested that perhaps the child’s mother had used the external activation device too often. Mother’s do that, they said. And naturally, that would deplete the power source… The doctor momentarily covered the phone with his hand, looked at me and mouthed the words, “Did you?” 

“No,” I replied emphatically, “I told you it’s a piece of…” 

But before I could finish, he turned back to the phone and said, “No, she did not.”

Later we found out that using the higher, more effective frequency settings…the ones that actually control seizures… dramatically reduce the device’s battery life. In hindsight, that would have been good to know.

And the documentation of this phenomena is in the doctors’ device manual. Buried in a subheading about specification and power supply and split between two pages and discussed in vague “power’s of” reduction terminology…Engineer talk. Not doctor talk. And definitely not plain talk. 

We all know that marketing is marketing. And advertising is meant to sell stuff. But the reality is that a medical implant is dramatically different than laundry detergent or toothpaste or a sports car. And if the alkaline batteries in your flashlight don’t last twice as long, we just accept it and move on. But changing the batteries in your flashlight doesn’t require a second surgery. And yes. It is a minor surgery, but then again, surgery is only minor if you are not the one getting it… 

My doctor said that maybe after we change the battery, he will re-evaluate the settings… But, given what I know about the higher settings and the effectiveness of the seizure control, I would make the same decision I made before. But, next time, my doctor and I will make the decision with eyes wide open and with complete disclosure. Like intelligent people make decisions. The way we should have been allowed to make the decision in the first place. Empowered with knowledge and treated with respect.

Personally, I think it’s time to raise the bar… and time to remember why quality matters… and why integrity matters. Especially in healthcare.

I haven’t told my son yet about the surgery. Maybe he knows? I’m not sure. But in about eight weeks, he and I all alone, thousands of miles from home, waiting in pre-op for the IV and the prep and the sedation…will wonder why no one cared enough to tell us the truth. 

I called the clinic today, “…yes, I know it’s just a minor surgery, but please can you give us the earliest surgery time?… yeah, I know…but he gets so tired and so hungry and so miserable if he has to wait all day… please?…he’s just a little boy and he doesn’t even understand why…”