When my son was 5 weeks old, he began to turn away from my breast even when hungry. He’d suck, then cry sharply and twist away. I called the office of my pediatrician, but she had no free appointments, so I saw another doctor in the practice instead. He examined my son, told me he had “gas pains,” and then asked me, “Are you feeling anxious about being a good mom?”
The next day, my son seemed better. Had I been overly anxious? Then my son projectile-vomited across the bedroom. I strapped him into his car seat and headed back to the doctor. The doctor I’d seen the day before asked his nurse to take me aside for a “mom heart-to-heart.” Being a new mom is anxiety-inducing, the nurse said, adding, “What are you doing for you?” I burst into tears. They must have thought I was a postpartum hormonal time bomb.
The next morning when my son tried to breast-feed, he stopped and screamed in a way that resonated within my cells. That sensation was something I’d felt only once before in my life.
Three decades earlier, at the age of 12, I’d stood at the side of my father’s hospital bed after he’d undergone a bowel resection, a “routine” gastrointestinal surgery. Every grown-up had told me that my dad would be fine despite postoperative complications. But as I looked into my father’s eyes that afternoon, I saw a depth of pain-laced love and the anticipation of loss. My earth tipped on its axis. I suddenly knew that despite what everyone was telling me, my father would not be fine.
That night, at the age of 42, my father died.
Racing to save my child
I arrived at the pediatrician’s office on the third morning of my son’s unexplained distress. As I began to explain why I was there, the doctor — the same one — interrupted me, gave me a handout on colic and a pat on the back, and ushered me out.
Just at that moment, my son’s original doctor — the one I’d joined the practice to see — stepped out of another room and saw me. “Haven’t I seen you here every day?” she asked, in a very kind voice. I nodded, swallowing back tears. “Let’s see your baby.”
She extended her arms and laid my son on the exam table, gently palpating his abdomen. “Tell me about when you first felt something wasn’t right. What else have you been noticing?”
She took a bottle of breast milk from my hands and offered it to my son. He sucked, turned beet red and twisted away with a sob. “Does he do this on the breast, too?”
I nodded.
Then she uttered the words that would save my son’s life. “I listen to my moms,” she said. “Given what I’m observing, I’d like to get an abdominal sonogram. His abdomen seems distended and hard,” she said.
A few hours later, the hospital’s sonogram report suggested pyloric stenosis, a condition caused by a tight muscle that prevents food from exiting the stomach and entering the intestines. When that muscle becomes rigid, it resembles an olive.
“I’ve called a pediatric surgeon at Johns Hopkins,” the pediatrician said. “He’ll meet you at the ER. Pack what you’ll need for the next week.” She put her hand on my arm. “I know this is difficult. But I promise you, we will help your baby. We will get through this.” She handed me a slip of paper. “Here’s my cell. Call when you’ve arrived.”
As I held my son against me, feeling his tired exhales warm and moist against my neck, I clung to the paper like a talisman.
Later that afternoon, the Hopkins surgeon examined my son, rubbing his thumb over his belly, looking for the swollen muscle. “Pyloric stenosis, my eye!” he nearly roared. “There’s no olive here!”
The new tests he wanted to run seemed invasive, and our pediatrician called to reassure my husband and me. “Please, trust us with your baby,” she said. “This is a cautious but necessary path.”
That evening, we stood outside a glass-walled room while our infant son underwent a procedure in which an ingested chalky substance made of barium can show abnormalities of the gastrointestinal tract on a live X-ray feed. Suddenly, the radiologist screamed. She picked up the phone and called the surgeon. “You have to see this! His intestines are wrapped north of his stomach! They’re about to twist off!” The surgeon arrived and operated on our son, unfurling his intestines, removing 21 adhesions and carefully placing his bowels back inside his abdomen.
Our baby’s recovery was tenuous. Some days, we ended up back at the hospital. Our surgeon called for nightly reports on bowel sounds. Once, we met our pediatrician at her office at 11 p.m.; another time, she examined our son on a bench during her son’s sporting event to ensure that his postoperative discomfort was not related to the surgery. Each time we saw each other that year — and even a few times during the two decades that followed — we hugged, blinking back tears. As my son began to live a normal boy’s life, we sighed with relief. He was, we agreed, “the one who almost got away.”
Why were we so fortunate?
Today, my son is 6-foot-2, about to graduate from college. When he was a newborn, his three-inch scar extended across his belly. Today that scar appears small. In the past two decades, his case has been taught in medical schools as an example of a potentially fatal diagnosis error in newborns, and it has been used in lawsuits by parents whose pediatricians hadn’t listened and whose children had needlessly died.
Why were we so fortunate? I didn’t know it at first, but despite almost losing our child, something good, and rare, had happened. We had won what I’ve since come to call the Doctor Lottery.
When you win the Doctor Lottery, there is no cash prize but a far greater payoff: the possibility of extraordinary healing, even a miracle. Our son survived because our physician took the time to listen, show compassion, partner with us, advocate and provide just the right care to save a life.
My family and I haven’t always won the Doctor Lottery. My father’s surgeon, for instance, had pushed him to have the bowel resection to “cure” him of diverticulitis, a disease in which the colon’s lining becomes inflamed. He stitched up my father’s intestines with a suture known to dissolve in patients who have been on steroids and hadn’t read my father’s chart to see that his internist had recently put him on cortisone. Nor did he look at the list of medications my father had carefully written down on his patient-intake forms. When the sutures dissolved, my father, who had a bleeding disorder, went into shock. His abdomen was distended and hard.
My mother asked the nurse to page the surgeon. “My husband is in so much pain!” she said. The surgeon, who was playing golf, told the nurse to tell my mother, “Pain after surgery is normal.” By the time my father developed a fever and peritonitis, it was too late. He died of a heart attack. “Normal courses of antibiotics proved unsuccessful,” my father’s death report reads.
My turn in the lottery
These experiences informed my own health journey when, in 2001, I became a revolving-door hospital patient facing two long periods of paralysis from Guillain-Barré syndrome, or GBS, a neurological autoimmune disease that can cause total paralysis. The day my Hopkins neurologist delivered the diagnosis, I passed through a portal into a terrifying and unknown universe.
As my husband filled out admission papers, my neurologist sat beside my wheelchair, explaining the treatment I would undergo. He would start infusions of other people’s healthy immune cells to try to reverse my paralysis. After he finished talking, we sat together in silence. Nurses rapped at the door. His patient waiting room filled. But he never left my side. I asked him why he stayed with me when he had so much to do. “I will not leave you sitting here alone,” he said. “Not with the news I’ve just given you.”
Over the next few months, I mostly recovered. But although GBS rarely strikes twice, four years later I developed it again. This time, I fell into a state of paralysis faster, and the damage to my nerves was more extensive. During my hospitalization, several of my doctor’s fellow neurologists warned me to “hope for the best but prepare for the worst.” They said that I might never get out of a wheelchair. But my neurologist shook his head and reassured me that some people did recover. He thought I could, too. “Don’t listen to them,” he told me. “I’m your doctor; I know you.”
His words stayed with me until eventually, I was able to navigate steps with a cane, then walk out my front door and down the driveway.
Still, like many GBS patients, I navigated through continuing flulike fatigue. I’d also developed symptoms of what would later be diagnosed as gastroparesis, a condition in which the stomach can’t empty itself normally. When I saw a local doctor for symptoms of what I assumed was an intestinal problem, he seemed to think me a hysteric and handed me a prescription drug for heartburn and esophageal problems. I will never forget the look of disdain on his face the second time I saw him when I hadn’t improved: “A few days ago you came in saying you were nauseated, and today you say you have diarrhea!” he said. “Make up your mind!”
I tried several other doctors over the next three years as my medical problems continued, until finally I found Anastasia Rowland-Seymour, then an internist at Johns Hopkins, who carefully listened to me tell my whole medical story — without ever looking at her computer. I told her that I knew I was lucky to be doing so well — walking, driving. But I also had bone-deep fatigue, numbness and headaches, and I often found myself so tired I had to lie down on the floor after climbing the stairs.
“That has to have taken quite a toll on you,” she said, wondering whether I thought that the decades of stress I’d faced might have played a role in the immune dysfunction she believed I now faced. She asked me whether my childhood had been stressful. I was astonished. “I’ve never thought about it that way,” I said and told her about my father’s sudden and young death, which had profoundly altered the childhood of my siblings and me.
From that day, I felt I’d found a partner on a path to healing, one who helped me incrementally incorporate mind-body approaches to well-being with conventional medical care. Rowland-Seymour told me she believed that my childhood stressors probably had altered the way my immune system responded, playing a role in GBS and gastroparesis, and also causing my immune system to attack my bone marrow, leading to profound fatigue.
Over the next year, my health dramatically improved.
Needless suffering
My family’s experience has taught me how important to healing the doctor-patient partnership is. Every patient wants — and deserves — to win the Doctor Lottery. It shouldn’t be simply a matter of chance.
Here’s what I learned:
●In my healing encounters, I felt that I was being heard, understood and respected by my doctor.
A 2015 study found that patients overwhelmingly felt that what mattered most was having a physician who listened, acknowledged their condition, was honest and treated them as an equal. A 2006 study found that the single greatest predictor of whether patients with HIV adhered to treatment was whether they felt “known as a person” by their physician.
●The extraordinary doctors who tended my family made it clear they would stand shoulder to shoulder with us — rather than simply to give directives and move on. Not one of them stared at their computer screen while in the exam room; they talked to us face to face, like a friend. That rapport helped us deal with uncertainty in the face of terror, and preserve a hope for recovery.
This doesn’t mean offering a patient false hope, Rowland-Seymour says, but rather “a sense that we are going to figure out how to manage this, and get you better, and we are going to do it as a team.”
●Past trauma needs to part of any medical discussion. Studies have shown its long-term impact on health, yet most physicians are trained to "walk around trauma as the elephant in the room," Rowland-Seymour says. But you can't achieve true healing unless you deal with that elephant, she says.
Being tended to by doctors who are sensitive to patient needs and experiences can make the difference between a healing experience and one that is traumatic or worse.
I only wish it weren’t too late for my father to win the Doctor Lottery. His unnecessary death has inspired me to insist on having doctors who listen and treat me with respect. It is bittersweet that my dad’s unintentional legacy would help me reclaim my health and save the life of the grandson who, sadly, he never got to meet.
Jackson Nakazawa is a science journalist and the author of "Childhood Disrupted," "The Last Best Cure" and "The Autoimmune Epidemic." This article was excerpted from Health Affairs and can be read in full at healthaffairs.org.
