It began back in January with a simple rash—or so we thought.
My daughter had a rash all over her body, so I took her to the pediatrician. “Maybe it is a virus, or maybe it is just dermatitis. Don’t worry about it,” the doctor said. I was told to apply lotion and give it time.
A month later, we were at the dermatologist. We went back two weeks later, and then four weeks later, and then again another two times. With each visit, we got another cream, another possible diagnosis. No change in the rash.
So we returned to our pediatrician's office, which employs more than half-a-dozen physicians.
Each of the five times we went back, a different physician offered a different diagnosis. I'd repeat the same story and answer the exact same line of questioning (both to a nurse and a doctor at every visit). At doctor after doctor, my daughter’s height and weight were taken, to the point that she’d announce, “47 inches and 47 pounds” before she even got on the scale. She knew the drill by heart, as did I.
The ones not in the know were the physicians.
Each specialist we saw asked which creams she had tried, which antibiotics she had taken and which labs had been run. After my daughter’s second blood draw, I realized that from one doctor to another, no one knew which tests had already been performed. So I started carrying a folder with lab results and a bag of medicine bottles so I had the answers in hand.
As a mother, I knew something serious was wrong. My daughter had headaches, stomachaches, she couldn’t sleep and was barely eating. Plus, she had one dilated pupil. And her skin was so itchy that she scratched until she bled, meaning several rounds of antibiotics had to be taken to avoid infection.
We met with an ophthalmologist, an allergist, a rheumatologist and then another dermatologist. I was given ridiculous answers such as: “It’s most likely that the headaches are just behavioral.”
I was also given scary possible scenarios such as: “There could be a mass behind her eye.”
And beyond my new role as the walking data collector, I had to fight to get my child in for an appointment.
Apparently, specialists for children are few and far between, even around the major metropolitan area in which I live. I was told I’d have to wait more than two months to get an appointment with a pediatric ophthalmologist and around the same amount of time for a pediatric allergist.
But how can you tell a mother that her child could have a brain mass and then expect her to wait to see a physician for more than eight weeks?
I called in favors. I called friends with specialists and doctors and asked them to get me in. I was willing to pay out of pocket. Insurance was an afterthought at this point. I was willing to travel to any office, any time of day or take any cancellation. And I considered myself lucky to get scheduled with a nurse practitioner at the rheumatologist’s office because the doctor could not get us in until the fall.
Almost six months after this all began, I reluctantly took my daughter to yet another dermatologist. I’d been on his waiting list awhile. I was told he was older, unfriendly and very off-putting to children. But at this point, I had nothing to lose: The next step was the neurologist.
Bedside manner aside, this gruff physician finally gave us the answer we'd been searching for. He found a rare bacteria on my daughter’s skin and told us how to treat it. Two weeks later, her rash, along with all of her other symptoms, were gone. It was a relief.
But the experience left me feeling frustrated, exhausted, lost and desperate for a different way. I wondered how anyone, sick or healthy, could be expected to navigate a system so divided in communication.
As a reporter, I’m well aware of the challenges in the U.S. healthcare system. I’ve followed the debates on pricing transparency, drug rebates, value-based care, electronic health record connectivity, physician burnout and access to care. But I learned how frightening it is to be a patient—or the parent of a patient—and have so many physicians give you so many varying opinions and diagnoses.
I also learned that no one in the healthcare system was going to advocate for my daughter, so it was going to have to be me.
And I learned that healthcare providers and systems do not communicate with one another. There is no sharing of opinions, lab results, data or doctor-patient relationships.
I am left with a stack of medical bills and a pit in my stomach that this country has a long way to go to create a clear, navigable system for Americans. We need a system that uses all of the amazing technology and ingenuity that is available in 2019 while staying affordable and, most importantly, puts the patient’s well-being first.