He is born 22 weeks and six days into his mother’s pregnancy, his skin as thin as tissue paper, his eyelids and fingers still fused together. His body is so fragile that a slight misplacement of a breathing tube into his mouth could shear his tongue from its base. Any misalignment of his neck might kink tiny blood vessels, disrupting blood flow to his brain with devastating effects.
Under warming lights and using equipment tailored for small bodies, the neonatal team delicately attach monitors, insert lines through the baby’s belly button and mouth, and prepare to run the machines and medications that will coax his lungs open and his heart to beat.
He will survive.
A decade ago, babies born at 23 weeks gestation in Canada would have been almost certain to receive palliative care, with no attempt made to resuscitate. But over the past few years, there has been a surge in survival rates for increasingly younger and smaller newborns. The Canadian Neonatal Network (CNN) reported that 80 percent of infants born at 23 weeks in 2017 received cardiopulmonary resuscitation at birth, up from 60 percent in 2012. Of those who survived the trip from the delivery room to the neonatal intensive care unit (NICU), half were able to eventually go home. In 2010, no baby in the CNN database born before 23 weeks even survived to the NICU. By 2017, the survival rate was 60 percent. “It’s a self-fulfilling mechanism,” says Prakeshkumar Shah, director of the CNN and interim chief of pediatrics at Mount Sinai. “The more you attempt to intervene for survival, the better survival numbers you see.”
Advances in medical science such as improvements in equipment, nutrition and infection prevention are partly responsible for these changes in survival rates. In May, doctors in San Diego revealed that a baby born at 23 weeks gestation and weighing just 245 grams (about 8.6 ounces) had gone home after five months in hospital. This marked the lightest birth weight in a surviving infant ever recorded, generating global media attention. As doctors improve their understanding of the unique needs of “micro preemies,” the number of babies being born—and surviving—at what were once considered unviable gestational ages is increasing.
But beyond advances in medical science lies a culture shift that is equally influential in the increasing survival of younger, smaller babies. The shift is occurring both in the way medicine perceives babies born so early and the hurdles they face, and also in how physicians engage families in the decision to resuscitate these infants. Doctors use the term “periviable” to describe babies born at the boundary between having or not having a chance at survival outside the womb with active medical care. Currently, that encompasses babies born between 22–25 weeks gestation. Generally, the younger the baby, the lower the likelihood of survival, and the higher the likelihood of ensuing disability if the baby does survive. Resuscitation at this stage used to be pre-empted by physician concerns that the harm of intensive care outweighed the benefit. Today, a shift toward parental choice, informed by extensive counselling about the risks and benefits of resuscitation, is a major contributor to the downward drift in the age of periviability.
A new normal in resuscitating premature infants
The shift toward earlier resuscitation began with a trickle of information from Japan a decade ago. At that time, Canadian neonatal medicine was almost always defaulting to comfort care for these younger newborns, daunted by dismal outcomes from the 1980s for babies born before 24 weeks gestation or weighing less than 500 grams.
“The major leader in this quest is Japan,” says Shah. “Any baby who is born alive in Japan, they will resuscitate them.” The result is a deep data set showing 60 percent survival rates for infants born at 23 weeks between 2003 and 2005.
Shah says the Japanese influence began to be felt at Canadian hospitals with the most specialized NICU units, such as Sunnybrook and Mount Sinai in Toronto. “About five to six years ago, Mount Sinai started to see more of a cohort of 23-weekers,” says Shah. “As for 22 weeks, maybe the last one to two years.”
“The challenge in caring for these 22–23 week babies is that they are very small,” says Shah. “Their skin doesn’t hold water. It takes a lot of skill to put the breathing tube in, or to get IV access to provide nutrition.” Many factors beyond gestational age have a profound impact on a baby’s chances of survival, from the weight of the baby, to the health of the pregnancy, to the quality of the medical equipment available in those first critical minutes. And despite a care team’s best efforts, approximately half of the babies born at 23 weeks who survive birth do not survive to be discharged home.
Neonatal units continue to make changes, from dedicated care teams, to more refined handling practices. “We know babies do better if they are born at tertiary care facilities, and if the mother gets steroids for the baby’s lungs and magnesium to protect their brains,” says Shah. “The more we do, the more we can do. We are always learning from the babies we take care of.”
Premature infants and the stigma of disability
Emerging awareness of international data triggered soul-searching in the Canadian medical community about how to engage parents in making decisions about resuscitation. That led, in turn, to questioning whether there was a double standard at play: a bias against resuscitating micro preemies, while simultaneously expending enormous resources to save older children who face similar—or worse—survival rates.
Heather Radford is a mother of a happy four-year-old boy who was born by Cesarean section at 22 weeks and six days. She describes how the doctors emphasized every bad thing that could possibly happen should she choose to resuscitate. “It was all a blur of scary words and numbers, but I couldn’t live with myself if we didn’t try,” she says. “He does have a diagnosis of mild cerebral palsy, and he is legally blind, but he walks and runs and jumps and plays. No one ever said to us, ‘Just because he’s blind doesn’t mean he won’t have joy.’”
Neonatal physicians credit the research of Annie Janvier, a neonatologist and clinical ethicist at Montreal’s Sainte-Justine hospital, for challenging the bias against trying to save extremely preterm infants. Janvier’s work found that health care providers take vastly different approaches to resuscitating a 24-week preterm infant than a two-month-old with, for example, bacterial meningitis, despite the fact that both might have the same odds of survival and ensuing disability. With the two-month-old, the default process is to resuscitate without hesitation. With the very premature infant, there is more hesitation and a more deliberate informed consent process with the parents.
“It is indeed a question of philosophy,” notes Janvier in an email. “We do not have the same approach when kids are older.”
“People think we are draining resources into this futile project, yet we’re OK pouring resources into a child with brain cancer who has a much lower chance of survival,” says Eugene Ng, medical director of the NICU at Sunnybrook. “Maybe there’s a discriminatory component to how we think about these babies.”
In her work, Janvier suggests that this bias reflects the stigma surrounding disability, and a reluctance in the medical community to create morbidity and disability by intervening with babies at an extremely young age.
But some medical professionals worry that the increasingly quoted survival statistics and the drive toward resuscitating lower and lower birth ages run the risk of conveying false hope to parents of micro preemies. Even babies who experience care in the most state-of-the-art 21st-century NICU still face steep health challenges, including severe infection and brain bleeds. Longer-term, 22–23 week infants face a 50–75 percent chance of having a neurodevelopmental disability, ranging from motor and cognitive impairments to vision impairment and deafness.
A new perspective on working with families of periviable babies
Previously, if the challenge of resuscitation, hurdles in the NICU, and the likelihood of ensuing disability were considered too high, physicians did not typically offer resuscitation to parents facing preterm birth. Rather, babies were offered comfort care and parents were offered a chance to hold them until they died (if they were born with a heartbeat).
Over and above medical advance, the last few years have seen a greater emphasis in medicine on engaging with parents about their individual threshold for short- and long-term risks of resuscitating a periviable infant, and on allowing parents to decide for themselves what constitutes quality of life.
“Parents are not expecting us to save everyone, and I don’t think they are expecting us to give them children who don’t have challenges,” says neonatologist Paige Church. She is the director of the Neonatal Follow-Up Clinic at Sunnybrook. She says parents “don’t want these decisions to be made for them. They’re educated. They’re talking to each other.”
As the medical community develops a more textured understanding of outcomes for babies born as early as 22 or 23 weeks, doctors are stepping away from an algorithmic approach grounded in statistics and adopting more artful, individualized counselling styles.
“I remember being handed a piece of paper with a chart and numbers—that’s what I used to base all my counselling on,” says Eugene Ng. Years of conversations with parents have shifted the way he approaches them; today he emphasizes their individual values, and spends less time quoting statistics and more time understanding parents’ perspectives and needs. “What you say to people makes an incredible impact for the rest of their lives,” he says. Doctors can’t “just dump statistics” on parents and wait for their decision.
A major challenge is that preterm labour is often unexplained and unpredictable. “Sometimes patients present in spontaneous labour, in shock and pain with very little time to reflect and to make a choice,” says Wendy Whittle, obstetrician and maternal fetal medicine specialist at Mount Sinai. “No matter what, it is up to the physician to be as unbiased as possible in an area where we as a profession are undecided, and divided.”
“Parents need to know what comfort care entails,” she adds. “And they need to know that comfort care does not mean doing nothing.”
Church describes how she approaches families facing preterm labour who have been referred to her for counselling: “Tell me about your family unit; tell me about your religious background; tell me about your values, tell me what matters to you,” she asks them. Essentially, she says, health care providers need to ask, “What do you wish for your child?” “And most people say joy, love, independence, an opportunity for an education. And then we have to provide them an education around those goals.”
Her counselling sessions often take place over many hours where she offers the family a fine-grained look at what life might be like for a child growing up with challenges highly associated with extreme prematurity. These discussions include the support resources available, and describe details down to the type of tape used on the floor to help a child with visual impairment navigate hallways at school.
She emphasizes the importance of establishing trust with each family, and reflects on the work still to be done to improve the counselling skills of medical trainees, and more generally, to address medical and societal biases toward very premature babies and their families.
“We think of a good outcome in terms of survival without a disability. And that everything else is a bad outcome,” says Church. Whereas when a family feels ill prepared for the journey beyond the choice to resuscitate or not, “that,” she says, “is the failure.”
A truly good outcome, in Church’s opinion, is when the family is informed and prepared for the road that lies ahead. Even when they choose what she herself might not.
Emily Delpero is a senior resident physician in obstetrics and gynecology currently learning and working in downtown Toronto. She is also a freelance writer and is pursuing a Certificate in Health Impact, offered jointly through the Munk School of Global Affairs and Public Policy and the Dalla Lana School of Public Health.