A week before I rushed our four-month-old baby to the hospital, where he received a life-altering diagnosis, I brought him to the pediatrician, who told me, “Stop worrying.” That was impossible. There was no off switch. More attuned to my child than any test or clinical exam could be that day, I knew something was wrong. At that time I had no experience as a mom of a medically complex child, and yet I intuited something that the pediatrician’s exam fully missed. In the six years since that day, I’ve learned to trust this intuition. It has become a remarkably sensitive instrument, alerting me to discomfort, dehydration, fever, and even seizure risk.
For years I wondered how clinicians understood this kind of parental knowing. During a recent Courageous Parents Network webinar, three experienced pediatric clinicians offered their answer. Their reflections revealed that true partnership isn’t about who has the medical knowledge. It’s about recognizing that parents hold a kind of expertise no one else can.
When Dr. Khaliah Johnson reflected on her own training, she shared a lesson she learned from one of her mentors, pediatrician Dr. Leah Harris: “The parent is always right.” As a young physician, she understood it as a clinical pearl. Years later, after caring for families and becoming a parent herself, she understands it much more deeply.
“There is this knowing that parents have as it relates to their child,” she said. “No one else in the universe can possibly have this instinct.”
She searched for the right word—instinct, intuition, knowing—but perhaps none of them fully capture what parents develop through years of living alongside their child. It is the accumulation of countless observations, sleepless nights, tiny changes, hard decisions, and moments that never make it into a medical record.
Parents often know when something is different long before they know how to explain it. An important part of becoming the medical mom I am today has been learning to trust this motherly way of knowing. I am grateful for the nurses and physicians who have validated those instincts rather than dismissed them—who have listened carefully, partnered in observation, and treated my perspective as meaningful clinical information. Those are the clinicians who have offered exceptional care and, ultimately, better outcomes.
Dr. Jay Berry shared a story that illustrates this beautifully. Early in his career, a mother brought her son with cerebral palsy to the emergency department. She calmly explained that his right foot had started shaking and that this meant he would have a major seizure within about twenty minutes.
As a resident, Dr. Berry remembers thinking that he’d never read anything about a shaky right foot leading to seizure activity in a textbook. But the seasoned emergency department staff encouraged the young Dr. Berry to take the mother’s concerns seriously. And so, they started an IV and were ready when twenty minutes later, exactly as she predicted, her son had the seizure.
Experiences like that changed him as a physician.
It was powerful to hear the clinicians reflect on what they wish they had understood earlier in their careers. Dr. Berry looked back “appalled” at how naïve he had been about the realities families carry every day: the caregiving, the difficult decisions, the work of holding marriages, siblings, jobs, and ordinary life together while caring for a child with medical complexity. Dr. Johnson reflected on how little she understood about the barriers families face just entering the healthcare system, where they are asked to learn an entirely new language while simultaneously becoming expert caregivers. Dr. Treat said she hadn’t appreciated the emotional energy it takes simply to walk into a clinic appointment—the vulnerability of wondering what news might come, whether you’ll have to convince someone to listen, or whether you’ll leave feeling understood.
None of these realizations came from a textbook. They came from listening to their patients’ parents. Perhaps that’s what “the parent is always right” clinical pearl really asks of clinicians—not that they surrender their medical expertise, but that they make room for another kind of expertise alongside it. Scientific evidence matters. Years of training matter. And so does the wisdom that comes from loving one particular child every single day. When clinicians make room for both, children receive the benefit of every kind of expertise available to them.