I Worked for a Hospital That Misdiagnosed My Son’s Chronic Condition
We spent months complaining about his spine to doctors. I trusted my colleagues beyond question. It was a terrible mistake.
“How is this even possible?” I whispered in disbelief. I was at my desk at work, staring at an image of my 15-month-old son’s MRI results. My husband called immediately after receiving a jarring phone call from our son’s pediatrician.
The black and white image was haunting. In the place of a normal, straight spine was something else entirely. Our son’s spine resembled the shape of an “S.” It morphed and curved like a roller-coaster through his torso, turning every which way from the top of his hips to the bottom of his neck.
“Why does it look like this?” I asked him through tears.
“He has severe infantile scoliosis,” my husband replied. “He has one curve that is almost thirty degrees, and another that is almost sixty.”
The numbers entered my brain but tottered around haphazardly. They didn’t make sense. How could this already be so bad?
Moving to a new city
When my husband and I moved across the country in 2016, I almost immediately landed a highly coveted job at one of the state’s top employers, a large healthcare center. People who lived their whole lives in the state would come to me for advice on the application process. “I’ve been applying for years to get a job there and haven’t been able to get anywhere,” friends would tell me time and time again.
The hospital worked hard to create a sense of unity and community among its employees. It was like we were all part of an elite club and constantly told we were the best at what we did. Doctors from across the world would come to see our specialized programs. Researchers would coordinate with our staff on studies that were aiming to cure humankind’s worst diseases. We were upheld as the gold standard, the best of the best, and the medical center that all others were trying to emulate.
I thoroughly loved my job. I believed in the hospital’s mission to make the world a better place, with less suffering and disease. Without a shred of dissension, I also believed that the advice and opinions from our doctors should be trusted. Our entire family trusted the hospital with all of our medical care, from routine visits to the entirety of my pregnancy, labor, and delivery.
Where the problems began
My son was born with torticollis, a condition involving neck muscles that cause the head to tilt. While considered rare with newborns, it normally corrects itself without treatment over the first few weeks of life. We had no idea at the time that torticollis is one of the leading symptoms of spinal deformities in babies.
My husband complained to doctors and nurses, physical therapists and medical assistants, and any other healthcare worker who saw our son since he was six months old.
“I think there is something wrong with his spine,” he would tell them.
They would all trace their fingers from the bottom of our son’s spine to about the middle of his back, where inexplicably the bumps of his vertebrae disappeared.
“It looks like it is covered with a large muscle,” some would reply, pointing to his right shoulder.
“I can feel his entire spine just fine,” said others.
We kept getting the same answers from every pediatrician, pediatric fellow, and pediatric resident that we saw. None of them thought it was a concern.
“I think we should just stop asking about it,” I told my husband. “A dozen different people have given us the same answer. If there were an issue, they would’ve realized it by now.”
Between birth and two years old, a child is seen every three months for a routine well-child visit. Their vitals are taken, including height and weight, and parents are shown a nifty little chart on the computer at every visit that maps out trends and percentages for growth.
It was at 6-months-old, around the same time we began to notice the changes in our son’s back, that the chart for his height suddenly leveled off. What once looked like a straight diagonal line through the top fifty percent turned horizontal. His height was virtually stagnant. In fact, it was starting to head in the complete opposite direction, towards lack of growth.
We were told that children grow at different rates. That because I am barely five-feet tall and my husband is six-foot-five, it would be difficult to estimate where our son would end up in terms of height. That perhaps the nurse didn’t get an exact measurement since babies can be so squirmy on the measuring table. There were even a couple of times they re-measured him, only to find that their calculations hadn’t been off. Still, no one thought it was anything to worry about.
As a 12-month-old, our son was referred to a physical therapist and through the medical center to help improve his still-persistent torticollis. My husband asked about our son’s spine yet again, and for the last time, they assured us that everything appeared perfectly normal.
Finally getting a diagnosis
It was finally at our son’s 15-month-old visit when we saw an attending physician who seemed to know instantly that something was wrong. He noted how our son’s entire torso seemed curved to the left, while the torticollis in his neck, which had continued to worsen despite intervention, curved to the right. He ordered an MRI to be done that very same day.
The attending conferred with our regular pediatrician outside the exam room, who then came in and apologized to us. Even at this point, after every clue was given to me that something was seriously amiss, I didn’t quite understand what was about to happen. I foolishly held on to hope that the MRI would show there was nothing wrong.
But there I sat at my desk a few days later, looking at the images of a severely twisted spine, and I was dumbfounded. The diagnosis's initial shock turned into confusion, which then became anger, and then fully devolved into grief with the more I learned.
The condition was fatal if not properly treated. Organs could be affected, including the heart and lungs, and would likely have to be treated with multiple surgeries. Causes ranged from genetic, to neuromuscular, to idiopathic (no definitive cause).
I wanted answers. No matter what they were. For me, information and knowledge have always been power. I wanted us to figure out every possible origin of his condition, review every available treatment, and to have him be seen by only the country’s top-rated pediatric orthopedic surgeons.
It wasn’t until three pediatric orthopedic consultations later that we would finally get the full picture of his prognosis. His spine was not only curved, it was rotated inward. He was missing ribs. Two of his neck vertebrae were fused together (we now lovingly call this part of his body “Mega-Spine”).
Feelings of betrayal
I cannot attempt to describe the depth of my grief over what felt like an unforgivable miscalculation on my part, blindly trusting the opinions of doctors over my own parenting instincts.
The hospital that I had upheld in my mind as the best in the state, whose employees I had considered friends and coworkers, I had taken their medical opinions without question. Trusting their judgment above all others, we never sought a second opinion from a different medical center. Why would we?
I felt betrayed by those I believed I could trust the most. The full weight of my disillusionment felt heavy for weeks after, as the gravity and extent of what had occurred and all that had been missed began to piece itself together.
No one had taken a moment to step back and look at his entire medical profile. The ever-present torticollis, the leveled-out growth on his chart, or our dozens of complaints about his back. It suddenly all made sense, and it infuriated me.
Seeking as many opinions as we could find, we still went forward with an orthopedic consultation with a surgeon at the same hospital. He, like the other surgeons we saw at different hospitals, recommended immediate Mehta cast surgery. It is an advanced procedure that uses body casting to help straighten the spine over time.
But my husband and I both agreed; we couldn’t trust them to care for our son anymore. While what they were recommending was probably correct, we had completely lost faith. Our wounds were too deep, our hearts aching for our son’s pain too great, and we couldn’t in good conscience continue to trust them with our most valuable asset: our son’s life.
We decided to get him treatment at a children’s hospital in Seattle that ranks in the world’s top ten pediatric orthopedics programs. I put a notice into my job, we found a house to rent, and we moved our entire lives to give him the best treatment possible.
Leaving my dream job
It was a somber but rather easy decision for me to leave my job so quickly. Just a couple of years earlier, sitting at my job orientation in awe of where I found myself, I never would’ve imagined leaving as I did. Actually, I had imagined myself retiring from there decades later, sorrowful that it was ending yet feeling completely fulfilled by my career.
Instead, after clearing out my desk and turning in my badge, the elevator doors closed in front of me one final time, and I felt relieved to be leaving. Every small piece of me was demoralized. My heart hurt as I stepped into the lobby, breathing in the smell of the cafe’s freshly roasted coffee beans, a reminder of the bitterness I felt towards everything I was leaving behind.
Time has certainly helped to heal this wound. I look back on my experience as both the employee and patient of a hospital and think less of how it hurt me and more of what it taught me. Maya Angelou places my sentiments perfectly: “We are only as blind as we want to be.”
So why am I sharing this experience?
I have been taught a tough but important lesson: never stop questioning and never assume you will always get the right answers.
Although I have an extraordinary amount of confidence in my son’s current medical team, they will always be hearing my questions. And that’s exactly the way it should be.
Follow our son’s scoliosis journey from diagnosis to cast surgeries to his first brace: YouTube.com/TheRileyFamily
To learn more about childhood scoliosis and how you can help families in need, please visit: The Children’s Scoliosis Foundation
