Jack Maypole, MD
Jack Maypole, MD
Comprehensive Care Program, Boston Medical Center

Meta Thoughts on Children’s Health

Recently, I entered an exam room at the clinic where I work to see “Toby,” a nearly three-year-old pistol of a boy who’d been born four months premature. There was much to assess, including Toby’s poky weight gain, his motor delay, and his family’s upcoming move to a homeless shelter. As a clinician, I had reviewed his chart and had my agenda. Mom had her questions. Even an occupational therapist joining in had a few issues to review. To our collective delight, Toby set expectations high as I walked in: “This better be good!” he chirped.

And he is right, of course. We owe it to our children and families to use the fleeting time together as best we can to share some moments and get caught up and out in front of problems and concerns. Like parents, teachers, and the many others who care for children, we primary care doctors find the task of addressing all aspects of a child’s health in just 30 minutes daunting and, often, overwhelming.

As our tools become more sophisticated and our understanding of child health and development more expansive, the world grows more complicated around us, and our agenda more crowded. More than ever, medical technology has allowed children to survive into adulthood with chronic and complex medical conditions. This is a mixed blessing that can improve and save lives, yet calls upon us to evolve our systems of care (healthcare, education, social policy) to meet the demand. As parents, providers, educators, sons, sisters, neighbors, and caregivers, we must figure out how the world is changing and adapt our approaches accordingly.

For these reasons, the viewpoints and content in this article series are particularly compelling. Individually, these writings examine Big Questions about neurodevelopment, parenting, child health, and how we might optimize the healthcare system (such as it is). Included are the voices and stories of pediatric researchers, clinicians, specialists, and lawyers who work at the leading edge of where theories meet the messiness of real life. As you will see, some of our contributors provide perspectives from both sides of the fence, professional and personal, with the insight of individuals who work in the healthcare system but sometimes experience the same challenges as anyone else navigating it.

Science and research have advanced care for our children in countless ways. In this article series, Mandeep Rana, M.D., describes why the first years of life are so critical in a child’s brain development. In turn, Dr. Arathi Reddy discusses how parents and caregivers can make the most of these first years—and why it’s critical to recognize and treat cognitive or developmental problems as early as possible. As psychologist Martha Vibbert notes, certain children—notably premature infants, children with special needs, and children born into poverty—may face higher obstacles to healthy development and need better, more accessible and robust support systems.

Rethinking Healthcare
Given the major advancements in our knowledge of children’s health, we may need to blow up our existing paradigms and give new thought to the roots of our systemic problems in healthcare. “Poverty is a disease,” Perri Klass, M.D., states recently in the highly regarded Well Blog of The New York Times, “thwarting growth and development, robbing children of the healthy, happy futures they might otherwise expect.” Megan Sandel, M.D., agrees. And in her new article, “Housing: A New Vital Sign,” presented in this series, she argues compellingly that the social determinants of health in children—stress, homelessness, exposure to violence, and adversity—may be as great an indicator of a child’s health status as traditional ‘vital signs’ like a patient’s pulse or blood pressure.

The United States healthcare system is hopelessly complicated, and the participants in a child’s circle of care hail from realms that historically do not communicate well. In some cases, educators, therapists, and clinicians are pressed for time and unable to chat by email or phone. More often, these providers encounter difficulty collaborating and communicating due to privacy laws or a lack of a precedent or culture of working together. The result? As nurse practitioner Shari King points out, speaking from the frontlines of caring for children on the autism spectrum, the parents must fill the gap. Families fare better when they become the experts of their child’s care, King shares. They are the curators of continuity and the memory of what worked, what got done—and what didn’t.

In Mary Ellen Stolecki’s piece, we see how caring for a child with a complex or chronic illness is often an all-consuming, overwhelming business. The job is never easy, but there are lessons to learn and villages to build that can help parents feel supported, not isolated, in the journey.

Enter Child Advocates
In their respective articles, attorneys Ellen Lawton and Samantha Morton—both pioneers in the movement to integrate child advocacy into medical care—give personal and systemic perspectives to ensure that underrepresented patients and families have access to appropriate services. And, as Robert Sege, M.D., Ph.D., tells us, parents and children who foster connections to their extended family, and who cultivate networks of peer-to-peer support, may benefit long term and be more resilient.

Ultimately, these articles string together for us pearls of wisdom on how best to apply our shoulders to daunting problems. With luck, determination, and persistence, we hope lessons learned here result in better care for kids and families, healthier children, better learners, and one day, happier adults. As Toby would tell us, we’d better do a good job.

He’s right, of course.