The Lessons I Learned from My First Case in Medical School

"Never say never."

I often get asked what was the saddest case that I can remember as a doctor.

As a pediatrician (now retired 10 years after more than 38 years in clinical practice), I certainly saw my share of sad situations. One that sticks out in my mind was at the very beginning of my clinical years (year three of medical school). It made a lasting impression about how a child’s illness and subsequent death affects the family.

My very first patient was a six-month-old with spinal muscular atrophy. Imagine ALS (Lou Gehrig’s Disease) but in a 6-month-old, firstborn child who had been developing normally until he started to show signs of slow neurological deterioration.

An alert six-month-old child

I was that kind of medical student who was sometimes more interested in the social and psychological aspects than in the actual disease. After all, I had been a psychology major in college and at one point even toyed with the idea of becoming a child psychiatrist.

The baby’s final two months were excruciating because he continued to develop normally. He was showing the normal signs of alertness and engaging personality while at the same time, gradually losing all his motor abilities starting in the lower extremities. As he finally began to lose the involuntary functions of breathing and swallowing, his parents witnessed his inevitable slow death.

I kept in touch with the parents who decided to get pregnant as quickly as possible. Not even a year later, their second child was born and the pediatric neurologist who had cared for their first baby declared that their newborn baby was perfect. He stated that statistically their second child could not have the same disorder. But within four months, the newborn baby began to display the same symptoms as their first baby.

I couldn’t imagine how nervous the parents must have been because they were still grieving. When their concerns became more obvious, they again consulted the neurologist. Not wanting to be proven wrong, he told the mother that she was just being “neurotic.” He tried to reassure the parents that it “just couldn’t happen again.”

Unfortunately, it did happen a second time. By six months the second baby displayed the same downhill course, but this time, the baby died by the time he was 10 months old. Soon after his death, the parents split up and I lost touch with them.

I learned two very important lessons from this particular case.

The first was “Never say never.” Unfortunately, certain genetic diseases do repeat themselves within a family. Statistics may tell you that a given disease may be 1 in 4, but sometimes, the roll of the genetic dice comes up the same a second time.

The second lesson I learned was to trust parents’ instincts. Most parents know their children better than any doctor possibly could. Mothers especially have a gut feeling when something is wrong and their concerns should never be dismissed as neurotic. Fathers, wanting to be reassuring will sometimes deny the most obvious findings.

As autism is now occurring more frequently, I have often seen how mothers will recognize their child’s developmental delays sooner than the fathers. It is up to the pediatrician to understand these differences.

Good communication between parents and their doctor is essential. Some doctors are just naturally better at this part of medicine than others. I believe that this “handholding” function is the most important feature of being a successful pediatrician.