The next contraction came, and through the searing pain and exhaustion, my wife screamed and pushed, completely absorbed in that private world of childbirth. But from her pain and monumental effort came a result—my son’s head popped out. The excitement was tempered by the sounds of his heart monitor, which began bleating out the low drone of his heart rate crashing again. It dropped much lower than before, down to forty beats a minute. My wife stopped pushing, the contraction gone. Her face relaxed, and then her pelvis. The baby retreated to where he had come from, and the slow heart rate that should have started to recover by now didn’t. And it was dropping lower and lower, now thirty, now twenty, with no signs of recovery. Then the pinging heartbeat dropped to its lowest and slowest pitch yet, a sickening sign of a life slipping away.
“Don’t stop! Don’t stop!” the doctor pleaded, grabbing my wife’s hand in hers. “You need to get this baby out. Push! Push! Push!” I joined into the entreaties and started screaming, “Push! Push!” Confused, and shielded from the reality of her newborn’s devastatingly low heart rate, my wife started pushing again. Once and nothing; then twice and nothing.
“One more big push!” I yelled. It was my turn now to squeeze her arm, and I squeezed it hard. Finally, with a huge effort and a high-pitched scream, my wife pushed with all of her might, and the little guy came squirting out in rush of liquid and slime. He was beautiful, but he wasn’t moving at all. His head and body were completely flaccid, his eyes shut, and his skin a sickening pale blue.
It was clear now what had caused his heart rate to dip low: around his neck the umbilical cord was wrapped tight in a single, well-defined knot. It all made perfect sense. As he got farther down the birth canal, the umbilical cord, constrained by its tether to the placenta, had wrapped itself tighter and tighter, like a perfectly constructed noose.
The nurse quickly cut the cord, and she and the and doctor brushed past me and put the baby on the newborn bed, a bright warming light shining down.
“Somebody page pediatrics. Stat!” the doctor yelled. “His APGAR is four.”
She then turned the warming lamp up to high and shook our child’s chest. He did nothing, remaining flaccid and blue. The doctor grabbed the oxygen mask and strapped it onto his face, but still nothing happened. Ten seconds passed, then twenty, then thirty, without the faintest hint of a limb stirring.
A nurse hurriedly got an intubation tray ready to insert a tube into my son’s mouth and hook him up to a ventilator. If he couldn’t breathe, the ventilator would have to do it for him. I took a look at the instruments the staff was about to employ. The intubation blade, about six inches long and shiny silver, would be used to pull open his mouth to get a good look at the airway opening. The tracheal tube was a simple piece of plastic with a balloon on the end, ready to be thrust down to deliver the breaths of life. There was no question about him needing the tube. We were just waiting for the pediatricians now.
Another nurse came over with a breathing bag to deliver rescue breaths until they got the tube in. Before strapping on the mask, she gave my son one final shake, and through a miracle, she connected with what was likely the single neuron in his brain that was still firing. He shook his head, took a huge breath, instantly turned a bright red, and let out a huge scream, affirming his secure place in the world.
* * *
On the spectrum of childbirth complications, my son’s issue was serious, but an umbilical cord around the neck is not uncommon. In the 1950s and ’60s, the problem facing pediatricians in the United States was significantly worse, with ten thousand newborns a year dying of a mysterious lung disease, not to mention the other thousands worldwide. Most who succumbed didn’t live past a week. In the United States, another fifteen thousand who were affected by this strange inflammatory condition were left with suboptimal lungs when they recovered.
Typically, these little ones were born early, sometimes by a few weeks, sometimes by a few months, and never got a chance in life. Their deliveries were generally uncomplicated, but within a few minutes of birth their breathing would become labored and noisy. High-pitched grunting would come out of their lungs with exhalation, and their nostrils would flare out and in as they struggled to get enough air into their lungs. Their chest walls would pump up and down, their breath rapid and shallow. Their skin, initially a healthy pink from their mother’s oxygen supply, would turn a grayish blue, the tips of their fingers forbiddingly dark. Other complications followed—bleeding into the brain, kidneys shutting down, and seizures.
From the delivery room, the babies were attended by pediatricians who desperately tried to keep them alive. But there wasn’t much the staff could do, since not much was known about how to treat them at the time, and no medicines existed to cure whatever was happening. And so these babies, often very small but with normal hearts and brains and kidneys and livers, had their lungs collapse for no apparent reason. Many died.
The most famous of these breathing-challenged babies was Patrick Kennedy. Born five and a half weeks early on August 7, 1963, on Cape Cod, he began having breathing difficulties immediately after birth. Transferred to an intensive care unit (ICU) in Boston, he continued to decline, his organs failing. His body finally gave out and he passed away two days later. If there was nothing very remarkable about the baby’s illness, there was something unique about his parents. His father was John F. Kennedy, thirty-fifth president of the United States, and his mother was Jacqueline Bouvier Kennedy, the First Lady.
The nation mourned with them that August, but that was all anybody could do, because nobody had a clue as to what was causing these tragedies.
Mary Ellen Avery, who eventually helped solve the mystery of neonatal respiratory distress syndrome, came from a simple background—her mother was a school principal, and her father, despite being blind, started a successful cotton products business during the Depression in the 1930s. The lesson he taught his children was obvious: problems were meant to be solved.
Mary Ellen started kindergarten early, and then skipped sixth grade. By seventh grade, she was telling everybody she wanted to be a doctor. This desire was no doubt due to the influence of the seventh grader’s neighbor and mentor, Emily Bacon, a professor of pediatrics at the Woman’s Medical College of Pennsylvania, in Philadelphia. Dr. Bacon would take Mary Ellen with her to the hospital some mornings and show her newborns in the nursery. There, one day, Mary Ellen saw an infant grunting and wheezing and turning blue, her first exposure to premature respiratory distress syndrome. If this disease could be cured, she thought, the additional years of life added would quite simply be a lifetime.39
Mary Ellen attended Wheaton College in rural Norton, Massachusetts, where she continued her upward trajectory, graduating summa cum laude in chemistry in 1948. Determined to get the best medical education possible, she applied only to Harvard and Johns Hopkins. She didn’t know then that Harvard didn’t accept women, and she never heard from them. But Johns Hopkins University School of Medicine had been founded in 1893 with money from several wealthy female benefactors, who had insisted that educating female physicians be an equal part of the institution’s mission. They accepted eighty-six men and four women in Mary Ellen’s year.40
Despite the challenges and resistance from some chauvinist professors, Mary Ellen graduated and stayed on afterward for an internship and residency in pediatrics. A month into the internship, in a screening test, she was diagnosed with tuberculosis and was packed off to a sanatorium in upstate New York, where she was instructed to lie down for most of the day while the antibiotics did their job. Once cured, she returned to finish her training at Hopkins in 1954. The hours were long—shifts of thirty-six hours were the norm then—but it was an exciting time to be in medicine. A year earlier, in 1953, James Watson and Francis Crick had written a paper on the structure of DNA, our genetic material. Also around this time, cardiac catheterization started, and accurate diagnosis of heart disease became a reality. The number of available antibiotics expanded to five, then ten, then twenty. Huge medical breakthroughs seemed to be coming once a month.
At the end of her three years of clinical training, Mary Ellen was still deeply bothered by babies dying of lung failure, and held to the dictum of the Italian Renaissance scientist