CPN | Jack's Legacy: Shared Struggles

Jack's Legacy: Shared Struggles

 SHARED STRUGGLES

My son, Jack, was born on a cold November morning in 1998. Jack made his entrance into this world 7 weeks early. After a mostly uneventful stay, Jack left the NICU six weeks after he was born accompanied by an oxygen tank and pulse oximeter. He joined his two older sisters at home and our family of five settled in, expecting Jack’s need for supplemental oxygen to be short-lived. He just needs more time to grow, they told us

A month after he was discharged from the NICU, Jack had an apneic event at home (and  yes, rescue breaths really do rescue), and he spent the next three months bouncing in and out of the PICU for respiratory distress. Following several surgeries, multiple failed attempts at extubation, and an inconclusive muscle biopsy, Jack was discharged from the PICU with a trach, g-tube and connected to a ventilator to assist with his breathing. Prior to discharge, I was told I needed to choose a pulmonologist to follow Jack on his ventilator. Not being enamored with any of the pulmonologist I encountered during Jack’s PICU stay and finding out that a highly recommended pulmonologist at another hospital was not taking new patients, I was at a loss for who was going to manage Jack’s ventilator. Providentially, one of the PICU intensivists, Dr. Barry Markovitz, offered to take on the unconventional role of managing Jack’s care, along with a critical care fellow he recruited to help.

 After several years, when it was clear that Jack would need long-term ventilatory support, his care was taken over by a pediatric pulmonologist who specialized in the management of ventilator dependent children. However, despite this break in the doctor-patient relationship, Barry and I stayed in touch over the course of Jack’s life – me, always seeking out Barry’s advice and reason in connection with Jack’s care, and Barry always willing to listen and help in any way he could.

Jack was ultimately diagnosed with a rare congenital muscular dystrophy known as  Dystroglycanopathy CMD. Jack’s form of CMD affected his muscles, eyes and brain. Despite being born with a disease that stole so much from him, Jack radiated love every day of his life.  My beautiful son, who could not purposefully move his body; who could not sustain his breathing without the assistance of a machine; who never enjoyed the experience of eating food; and who never spoke the words his mind so clearly held, woke up every morning with a smile on his face and eyes that sparkled with the anticipation of a new day. Jack lived a love-filled life for 15 years. On January 5, 2014, Jack died from complications of his disease.

After Jack died, I was lost. For fifteen years, my life was centered around Jack and his intense needs. What was I supposed to do now? Just as he had those many years before in the PICU when I needed someone to manage Jack’s vent, Barry showed up. Eight months after Jack died, Barry suggested we write a book together (although, if you ask Barry whose idea the book was, he will insist it was my idea, but I am certain it was his!) Nevertheless, together we envisioned a “both sides of the story” in the care of medically complex children kind of book. There were books written by parents and books written by doctors, but this would be the first book we knew of that would bring the stories of parents and doctors together. We knew that the people we needed to make it happen – the parents of medically complex children and the pediatricians caring for these children – were exceptionally busy people. Asking parents deep in the trenches of caring for their child and physicians overwhelmed with patient and academic responsibilities to take the time to write a story for the book was, admittedly, an intimidating endeavor. We reached out to our respective networks of parents and colleagues not knowing what to expect, but hoping for the best. The response we received was overwhelmingly kind and supportive, and on April 28, 2021, Shared Struggles: Stories from Parents and Pediatricians Caring for Children with Serious Illnesses was published.

Shared Struggles is a compilation of 46 stories written by parents and physicians that are grouped under four sections: Compassion, Trust, Communication and Hope. The parent stories tell of interactions with physicians that had a significant impact on them and their child and offer context and insight that promote empathy and reflection. The physician stories tell of interactions with patients and families that served as learning moments in their career and promote the humanization of medicine. Following each story is a parent commentary written by me and a physician commentary written by Barry. The commentaries provide an independent perspective on the events and messages conveyed by the story contributor and are intended to encourage reflection, inquiry, and discussion.

Shared Struggles was written over the course of six years, but its roots were planted over twenty years ago in a pediatric intensive care unit when a special connection was made between a little boy named Jack, his mom, and a doctor who agreed to follow a kid on a vent even though it was outside the box. While we never imagined where that connection would take us, it seems only fitting that it would lead to the unconventional bringing together of parents and doctors to share their personal stories and experiences in this first of its kind book.

While working on Shared Struggles, I was in awe of the selflessness of the parents and physicians (many of whom did not even know me) who took time out of their busy lives to write a story for the book. I was deeply touched by their willingness to share such personal, and sometimes heartbreaking, stories, and by their enthusiasm for the need for a book like Shared Struggles. The prevailing messages that came through in this book are that parents are relentless advocates for their children and will do whatever it takes to make sure their child receives the best and most compassionate care possible, and that the physicians who care for our children truly do care about our children and they are impacted and often profoundly changed through their experiences in caring for our children.

As I hold the book in my hands and read the words on the back cover that say I am “the parent of a child born with a chronic complex condition who has more than 15 years of experience interacting with pediatric subspecialists and other healthcare professionals who cared for her son”, it sounds so foreign to me after so many years of being away from “the life.” In editing the stories and writing the commentaries, there were many times I questioned my authority to have any say in the stories and experiences shared. Yet, when I gave myself some grace, the words flowed. Because I do understand the experiences shared, and I also understand that this book is more than just an opportunity to bring parents and physicians together, it is an extension of why I was given Jack and why I was given the connections he brought to me and why I was given the lessons I learned as his mom. Shared Struggles is not my book, it is a collective effort, and will always be “our” book. But it is also Jack’s legacy and a reckoning for me of the “why” of all the hard that came with being Jack’s mom. The opportunity for this book came because Jack lived AND because Jack died. The price was high (too high), but to be given the opportunity to find the good in the hard is a gift I will always be grateful for.

Listen here to the podcast conversation between CPN’s Blyth Lord and co-editors Ann and Dr. Barry Markovitz

Shared Struggles can be ordered on Amazon: https://www.amazon.com/dp/3030680193?psc=1&ref=ppx_yo2_dt_b_product_details) or from the publisher’s website: https://www.springer.com/us/book/9783030680190

*All proceeds from the sale of Shared Struggles will be donated to various non-profit organizations that support children with medically complex children and their families.

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The Foreword to Shared Struggles written by pediatric palliative care physician, Dr. Christopher Adrian:

My mentor in palliative care fellowship once told me that most of what we do as palliative care providers can be summed up as helping the hospital learn and understand what’s going on in the patient’s room. By “the hospital” he meant the whole panoply of medical and psychosocial care providers assigned to the patient, orbiting near and far from the bedside, anybody who might open up one of our consult notes to read the documentation of conversations in which we asked parents to tell us about their hopes and worries, about the sources of their strength and support, and most importantly, about who their child is, not as a patient, but as a person, because a parent’s portrait of a child is a portrait of a parent’s values and a family’s values. By “the room” he meant not just the space enclosed by the four brightly colored walls, but the emotional and spiritual milieu in which the patient and family lived, loved, and hoped—the ordinary physical space being a metonymy for an extraordinary metaphysical space that housed not just the bodies of a patient and their family, but also their stories and their spirits.

This book is an exquisite collection of just that kind of story. To read it is to learn just how much goes on inside “the room,” just how rich and terrifying and beautiful any one family’s experience of the hospital can be, how totally different every family is in their unique phenotype of daily struggle and triumph, how very much the same they are in the example of profound loving they make to us all.

But this book collects the story of what’s going on in another room, one that intersects and overlaps with the physical and metaphysical spaces of the patient’s room. The doctor’s room is a workroom on the unit, but also the empty storeroom into which they might retreat to collect their thoughts and feelings, or the car in which they make their commute, and like the patient’s room, the doctor’s room expands to encompass their home, their own family, their friends. It is the head-space and the heart-space in which they attend to the patients and families under their care.

To collect and juxtapose these stories is already to make something beautiful for the world at large and useful for the community of care for children with serious illnesses and their families. But “Shared Struggles” takes the risk of committing itself to reconciling these stories, by means of parent and physician commentary which engage with the content from positions of equal and complimentary expertise. That risk elevates the beauty and use of the book such that it becomes something entirely astonishing and necessary and completely one-of-a-kind: a textbook of connection between physician and patient and family, one that illustrates in real time the process of reconciliation between the lived experience of each party, a reconciliation that is the fundamental act of pediatric medicine.

As pediatric medical providers, we talk about the art of medicine as something we practice upon patients, not often recognizing that patients and families, and parents especially, practice their own art of medicine, not on their children or themselves, but upon us. They are called to manage us, in the course of their child’s illness, just as much as we are called to manage their children, as they partner with us in loving care, seeking always to find a way to accept the help we offer while protecting their child from any harm we might do. You cannot tell someone how to practice such an art any more than you can tell them how to be compassionate, or empathetic, or kind. But that doesn’t mean instruction is impossible. Such attributes, and such art, can be fostered and encouraged into sturdy practice. You can’t simply tell someone how to make a genuine connection with their patient, how to shape their professional boundaries, not as lines in the sand, but as contours along the heart. You can’t just tell someone how to balance advocacy for their child with trust for a provider, how to put faith in the love of a stranger for their child and never lose faith with oneself. But you can certainly show them how to do it, as this collection shows us, with unparalleled richness and sincerity, over and over again.

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