Nothing tops the confusion, anger and fear I felt last June when a doctor “strongly advised” us to terminate our pregnancy with Lila. Seriously, can you imagine a world without LILA?!
Three days after Lila’s MRI, another doctor insulted my sensibilities and my role as a mother TO THE CORE! I finally got the call from the neurologists’s office regarding the questions I had for the doctor about Lila’s scans. Once again, the doctor himself was not the person on the other end of the phone line. Instead, it was a woman in the clinic’s call center who I don’t believe is a nurse and probably has no medical background. She just makes calls, takes notes — the go-between the doctor and the patient. To the best of my knowledge, this is the conversation we had:
LADY: I talked to Dr. [Wiki-Neuro-Jackhole] and he said that, yes, what Lila has — the periventricular leukomalacia — is what is causing her motor difficulties. (I’m thinking, “NO SHIT!? I’ve known this FOREVER!)
ME: (Stunned) Ok. I’m aware of this, but I want to know exactly which parts of her ventricles have the injury.
LADY: Dr. [A-hole] suggested you look up PVL on Wikipedia to get a broad understanding of PVL and if you have further questions, he’d be happy to see you in his office.
ME: (Steam coming out of my ears) Fine. When can I get in to see him?
LADY: His next available is in two weeks.
That a doctor told me to Wikipedia my doctor’s diagnosis and couldn’t speak to me directly about the results of her MRI is BEYOND me. I simply do not understand and never will. What the doctor doesn’t know is that I have looked at the Wikipedia site and every other godforsaken website about PVL and CP. I wanted basic information about a specific question about my daughter’s brain. To me, it seemed pretty cut and dry. The lady on the phone giving me the neuro’s message was nice as could be and I didn’t want to waste any more of her time so I made the appointment for the simple fact of getting a chance to tell this doctor where to go and what to take with him. It seemed that in having a person translate information and questions about a topic she was unfamiliar with, the information between myself and the doctor was lost in translation.
Fast forward two weeks. I’ve had time to cool down. Lila’s wonderful pediatrician, Dr. Thomas Stealey, called the radiology department on my behalf and spoke to the radiologist directly about Lila’s scans. The damage to her ventricles is moderate. There’s damage on both sides so they call it bilateral. It’s worse on the left side of her brain, which causes the weakness to the right side of her body. Dr. Stealey took the time to make those calls and fill me in. Thank God for him.
The day of the neurology appointment arrived and I smiled as the neuro came into the room and proceeded to talk to me as if I had NO CLUE what Lila’s diagnosis was. He drew a picture of the brain just as Dr. Hoekstra did for me the day we found out about the PVL when Lila was just a week old. I listened and let him go through his spiel.
As the appointment wrapped up I told the doctor there was something I wanted to talk to him about. “Why couldn’t I get you on the phone following Lila’s MRI?”
Doc squirmed in his chair. “Ah. I don’t know. I guess I don’t recall what happened.”
I told him exactly what happened, the calls made, the questions asked and his heinous response. “Besides having to wait two weeks to get the report on my daughter’s MRI, you had someone tell me to look up her diagnosis on WIKIPEDIA. It was insulting, insensitive and unprofessional,” I told him while remaining very calm and matter-of-fact.
“I’m sorry you feel that way,” he said. “We have hundreds of phone calls coming in every day and I wouldn’t be able to see patients if I took those calls. I guess I wasn’t aware you felt so compelled to speak directly to me and for that, I apologize. We usually have a very seamless system, but every once in awhile something like this happens. I get one complaint a year, so I guess this is that complaint?”
The jerk went on to say he couldn’t have discussed the MRI in the full detail that we did in today’s appointment, with which I replied: “I wasn’t asking for a half-hour of your time on the phone. I wanted a few minutes to get a very basic question answered and I was very happy to wait until our February appointment to talk about the rest.” Not to sound like a know-it-all, but I already knew everything he told me in the appointment anyway, because he treated me as if I were a parent learning of a diagnosis for the first time. To be fair, he did apologize and told me to call with any other questions and let the nurse know he said to call me.
I won’t be doing that. I will find another neurologist who is equally qualified and more gentle with his bedside manner. They’re a dime a dozen in this town and we have too long of a road ahead of us to not be comfortable with our doctors.
Ok, jumping off my soapbox now. Here’s a picture of Lila’s brain. The two white areas on the left and right are her ventricles. Although it’s hard to see, the ventricles are surrounded by areas of “brightness.” This is the dead brain tissue, a result of a lack of oxygen to her brain.