When Mama Bear Meets Medical Bureaucracy

Having a child with medical needs is not for the faint of heart. It often feels like a second full-time job, except the pay is lousy and the customer service department is nonexistent.

Recently, following a seizure, my son’s neurologist recommended he have an EEG. We got the test scheduled and completed. Then came the waiting game. After four weeks of chasing results, multiple phone calls, and enough portal messages to make me sound like a broken record, I finally received the report. Victory? Not exactly.

You see, once you get results, you would expect a doctor to review them with you. Especially when your child cannot explain what he is experiencing. But despite several attempts to connect, I was met with radio silence.

At this point I decided to call Johns Hopkins Neurology. They told me all we need is a referral faxed from his doctor. So now I need to reach out to Noah’s pediatrician, get the referral, and wait until it is in Johns Hopkins’ system to make an appointment. This is just an appointment. Meanwhile it has been two months since Noah had a seizure and I still have nothing.

By Saturday I was so fed up that I drafted yet another email and even reached out to the hospital’s Patient Advocate. I knew they likely would not be working over the weekend, but I had to do it before heading to my other “real” job. Monday rolled around, still no response. Today I called the doctor’s office and spoke with the nurse who had been responding to my MyChart messages. She assured me that the doctor had indeed received my messages. He just… had not responded. SERIOUSLY.

This is where Mama Bear comes out. Poor customer service is one thing when it is a package delivery. It is an entirely different thing when it is your child’s health. Unfortunately, Upper Chesapeake offers no email contacts on their website, so I am left digging for ways to be heard.

Thankfully, my son’s pediatrician is the real MVP here. She has already sent a referral to Johns Hopkins Neurology, so at least the wheels are turning. But now we wait again. How long until we get in? Who knows.

This is what it is like for families who have children with medical needs. We spend hours making phone calls, sending messages, following up, and advocating for care that should be simple. It is exhausting, frustrating, and sometimes infuriating.

So if you see a mom who looks like she is ready to fight a bear with her bare hands, chances are she is not mad at you. She is just trying to get a callback from a neurologist.

Have you been through a similar medical maze with your child or loved one? I would love to hear your suggestions, ideas, or stories in the comments.