The Boy Who Could Run But Not Walk: Understanding Neuroplasticity in the Child's Brain

In this groundbreaking book, Dr. Karen Pape tells the story of how some children with early brain damage astounded everyone around them. The brain injury they suffered at or near birth had led to motor problems such as the awkward gait we associate with cerebral palsy. Yet they were able to run, kick a soccer ball, tap dance, and play tennis. This was not supposed to happen. It ran counter to the prevailing belief that the brain is hardwired and fixed. When Dr. Pape first shared her remarkable findings, she ran into fierce opposition from mainstream medicine. Yet this courageous neonatologist didn’t back down.

In her clinical practice, Pape helped many young brain-damaged children to significantly improve their movement. It led her to ask why some of them could run but not walk with the same ease. Her answer was astounding: By the time they learned to run, their brains had healed. The awkward walking gait was actually a bad habit acquired while the brain was still damaged.

This is the power and the beauty of neuroplasticity, the brain’s amazing ability to change and heal. It has revolutionized the treatment of adults who suffer stroke. Now, for the first time, this remarkable book shows that children with a brain injury at or near birth can get better, too. These stories of children’s recovery and improvements are a revelation—surprising, inspiring, and illuminating. They offer real hope for some of the world’s most vulnerable children and a better understanding of how the baby brain grows and recovers.

advance praise for

The Boy Who Could Run But Not Walk

"This book is chock-full of cases of children with cerebral palsy who vastly exceed their physicians’ expectations, as well as practical advice for parents and caregivers on how this can be done. Karen Pape, MD, is a pioneer, rightly demanding that colleagues integrate the new science of brain plasticity as it applies to these children, and this is her cri de coeur, recording not only the new breakthroughs, but effectively explaining why, tragically, so many families are still denied these important interventions."

—Norman Doidge, MD, author of The Brain’s Way of Healing

and The Brain That Changes Itself

Full of wisdom, deep scientific and medical understanding, wonderful practical advice, and justified hope.

—Michael Merzenich, PhD Professor Emeritus, UCSF, author of Soft-Wired,

and winner of the 2016 Kavli Prize for Neuroscience

An affirmation of the life-changing benefits of neuroplastic healing and some powerful lessons for life.

—Jay Greenspan, MD, MBA, Neonatologist, Pediatrician-in-Chief,

A.I. DuPont Hospital for Children

The breakthrough book of a generation for brain change and a real blueprint of hope.

—Cynthia Frisina, Founder, Reaching for the Stars, Atlanta, GA

Accessible insights into breakthroughs in the understanding of neurological deficits in children, and exciting additions to the repertoire of available treatment methods.

—Warwick J. Peacock, MD, Director of the Surgical Science Laboratory at UCLA,

Professor Emeritus Neurosurgery, UCSF

Never before has a book been written that so effectively marries science and story to help parents understand how they can improve their child’s potential.

—Professor Iona Novak, PhD, Head of Research, Research Institute,

Cerebral Palsy Alliance, The University of Sydney, Australia

Dr. Pape’s recognition of this potential of the brain as it can be reflected in improved movement after brain damage, when the important authorities in medicine and neuroscience research strongly held the opposite belief, is a signal achievement and testament to her intellectual courage.

—Professor Edward Taub, PhD, Director, CI Therapy Research Group

and Taub Training Clinic, Birmingham, AL

As an adult with cerebral palsy, I kept yelling, YES! YES!" as I read The Boy Who Could Run But Not Walk. Finally, a book written by a doctor who ‘gets it’ when it comes to cerebral palsy treatment."

—John W. Quinn, author of Someone Like Me: An Unlikely Story of

Challenge and Triumph Over Cerebral Palsy

An amazing book that proves habit hides recovery. It can be done; it doesn’t matter what the disability. A good therapist, parent, or a sports coach can train a patient like an athlete—to achieve an optimal level of performance.

—Karen Orlando, BSc, PT, Diploma Sport Physiotherapy, and member

of the Canadian Olympic and Paralympic medical teams

A brilliantly insightful, contemporary, must-read on the practical applications of basic neuroscience discoveries.

—Elizabeth Theriault, PhD, Vice President Research and Informatics,

Ontario Brain Institute

This book has changed my expectations of what a child with brain injury can accomplish, and the results are truly astonishing.

—Pia Stampe, PT, DPT, Step by Step Pediatric Therapy Center, Rochester, NY

A wonderful journey through Pape’s career and scientific philosophy of neuroplasticity. Revelatory. Her greatest revelation may be that ‘habits hide recovery’—poor motor strategies adopted by an injured nervous system may preclude further improvements possible in a more mature or recovered nervous system.

—Keith Tansey, MD, PhD, Professor, Departments of Neurosurgery

and Neurobiology, University of Mississippi Medical Center, and

President-Elect, American Spinal Injury Association

"Refreshing and energizing! The Boy Who Could Run But Not Walk leads us on a journey not only of hope, but of action."

—Suzanne Davis Bombria, PT, C/NDT, Coordinator-Instructor, CT

Read this book. Dr. Karen Pape offers us the benefit of her remarkable and at times frustrating journey as a neonatologist who would not allow her own unorthodox understanding of the nervous system to be swallowed by conventional medical practices.

—Harris A. Gelbard, MD, PhD, Director, Center for Neural Development

and Disease, University of Rochester Medical Center, and

Wendy B. Gelbard, MD, Associate Vice President Student

Affairs, Rochester Institute of Technology

Finally, hope can be passed on to the masses of parents and individuals needing to train smarter and pursue great therapies with success. This book will change lives.

—Ross Lilley, Executive Director/Founder, AccesSportAmerica, Boston, MA

A solid education in brain injury recovery for the layperson, reminding parents to re-think what they have been told about their child’s prognosis.

—Deb Discenza, Founder, CEO, Publisher, Preemie World, LLC

"The potential for improvement, and even cure, for children with CP and other forms of brain injury appears to be grossly under exploited. The Boy Who Could Run But Not Walk offers genuine hope for all parents of at risk and diagnosed children with cerebral palsy."

—Drew Smith, PhD, Director, Motion Analysis Research Center,

Samuel Merritt University, Oakland, CA

Dr. Karen Pape challenges the ‘can't do’ attitudes surrounding traditional treatment. As parents, we can do no less.

—Ron Dolenti and Hope Caldwell, parents of twin boys with cerebral palsy

"Thank you, Dr. Karen Pape, for filling a void for parents who face the vast and intimidating landscape of therapies for children with cerebral palsy. The Boy Who Could Run But Not Walk will be my go-to guide for many years to come."

—Shoshana Hahn-Goldberg, PhD, mother of child with cerebral palsy

"When my son was 10, the medical field and therapists were unsure and lacking any hope for him to achieve new function or improve. He works out every day, played a whole season of sled hockey, and is more comfortable with his body than he has ever been! An absolute must-read for parents, physicians, and therapists!"

—Ruth Grant-Bailey, BSN, RN, mother to Mason Bailey, age 16

Like Norman Doidge and Oliver Sacks, Karen Pape challenges medical orthodoxy and breaks new ground. Her work should be required reading for medical students, practicing physicians, physiotherapists, and anyone who works with, coaches, cares for, and loves someone with cerebral palsy.

—Norah Myers, writer and editor

In my late-30s, I was told that I’d never walk unaided again. Dr. Karen Pape had the audacity to believe otherwise. My wish is that this book will encourage doctors not to settle for the status quo, but to look beyond the disabilities they see.

—Catherine Bell, President, PRIME Impressions, and polio survivor

Dr. Karen Pape changes the paradigm ‘No hope of a cure’ to ‘Cure for some and improvement for all,’ giving children with brain damage a reason to fight.

—Lorenzo Beltrame, professional tennis player and coach, awarded

Coach of the Year and Doc Counsilman Science Awards

by the United States Olympic Committee

Copyright © Karen Pape, 2016

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted, in any form or by any means, without prior written consent of the publisher.

Library and Archives Canada Cataloguing in Publication data available upon request.

ISBN 978-1-988025-05-6 (hardcover)

ISBN 978-1-988025-06-3 (ebook)

Printed in Canada

TO ORDER:

In Canada:

Georgetown Publications

34 Armstrong Avenue, Georgetown, ON L7G 4R9

In the U.S.A.:

Midpoint Book Sales & Distribution

27 West 20th Street, Suite 1102, New York, NY 10011

Cover design: Margie Miller

Cover illustration: Eladora, Shutterstock/123RF

Interior design and page layout: Kyle Gell Design

For more information, visit www.barlowbooks.com

For my teachers and mentors, who taught me to ask questions, and for the thousands of patients and their families, who were my greatest resource throughout my career.

With love to Sarah and Aaron, the best children anyone could ever hope to have.

contents

author’s note

introductionStarting a Revolution

oneThe Boy Who Could Run But Not Walk

twoThe Heretical Teachers

threeEvidence of Baby Brain Neuroplasticity

fourBaby Brain Neuroplasticity Ignored

fiveHow Doctors Think

sixUse It or Lose It

sevenPersonalized Neurorehabilitation

eightDance to the Music, Walk with Your Eyes

nineThe Girl Who Forgot Her Hand

tenA New Theory of Spasticity in Children

elevenWhat to Do in the First Four Years

twelveWhat to Do in the Middle Years

thirteenHow Teens Can Make New Habits

fourteenIt Is Never Too Late to Change

fifteenAim for a Cure

acknowledgments

glossary

endnotes

resources

index

about the author

author’s note

The information in this book is based on my years of clinical practice and research, and represents my best interpretation of the natural history of early acquired brain or nerve injuries. It is a comprehensive interpretation of my current knowledge, but I do not claim it to be complete. The information on medical conditions, therapy practices, and procedures is provided to the reader with the sole aim of developing your personal skills as an informed consumer. If you feel that any of my suggestions may apply to your child or yourself, please first discuss any action with your health-care team. Neither the author nor the publisher shall be liable or responsible for any loss or damage thought to arise from any information or suggestions in this book.

The clinical stories in this book are true. In some cases, names have been changed and stories have been merged to protect patient confidentiality. All direct quotes from patients or parents are included with their express permission to use both names and their story.

Products or procedures or surgeries mentioned in this book are for information only and should not be taken as a guarantee or endorsement.

At the date of publication, both the author and publisher have made every effort to ensure that information and internet addresses are accurate. Neither the author nor the publisher can be held responsible for changes to the contents or addresses of any external sites after publication.

introduction

Starting a Revolution

In the late 1990s, a three-year-old girl had half her brain surgically removed. She had Rasmussen’s syndrome, an inflammation of the brain that causes seizures that get progressively worse. Her seizures were not responding to medication and the damage was affecting her language skills and motor control. She was losing the ability to speak and the right side of her body was tightening up. Her condition was bad and getting worse.

By taking out the affected half of her brain, the surgeons expected to stop the seizures. They assumed she would remain disabled. They thought she might or might not be able to speak, but they were pretty sure she would achieve a degree of mobility. She would likely require a brace on one ankle (on the side opposite the half of her brain that was removed) to help her walk. But she would be alive and managing, and that, in the circumstances, was something.

What they did not anticipate is what actually happened.

The little girl recovered completely.

Not only were her seizures eradicated, but by the time she was seven she was running about like any other child. Her arm and hand were a bit stiff, but not enough to be noticeable. And, to top it off, even though the speech centres in her left brain had been removed, she was bilingual, fluent in Turkish and Dutch. All the functions that she should have lost, according to orthodox theory, had been restored.

She was just fine.¹

There are other isolated cases in the medical literature that are no less remarkable.

Over thirty-five years ago, a physician in Sheffield, England, noticed that one of his students had a larger than usual head. It wasn’t grotesque, but it was something a doctor would notice and this doctor was curious. He referred the young man to John Lorber, a professor of pediatrics at Sheffield University. Lorber ran a brain scan on the young man and what he saw was astounding. The average thickness of an adult human brain is approximately four and a half centimetres on each side between the outer cortical surface and the fluid-filled ventricles in the centre. In this young man with an enlarged head, the ventricles were huge and the brain tissue, the part that allows us to think and move, had been compressed to a tiny one-millimetre sliver of brain tissue.²

The young man’s problem was caused by hydrocephalus, a condition in which excess fluid builds up in the head. In this case, the blockage causing the fluid build-up was incomplete, so the pressure in the young man’s head increased slowly over time from a young age. In children, the skull bones separate and grow larger in response to the build-up of fluid, producing the large-looking head first noticed by his doctor. The brain tissue was able to compensate by stretching and thinning out. He probably still had a normal amount of brain tissue, but its shape and distribution had changed.

One might think that stretching and thinning a brain would affect the mental functioning of the young man. But no. He was thought to have an IQ of 126, had achieved first-class honours in mathematics, and was by all accounts leading an entirely conventional everyday life.

These two outstanding examples show that even if a person loses half a brain, and even when the brain is compressed to a one-millimetre sliver, it can still function, and function pretty well. One patient had a higher than normal IQ; the other spoke two very different languages. The young brain can change. This is neuroplasticity.

These cases were not, to say the least, what doctors expected. Until recently, the prevailing theory has been that the brain cannot change. If some part of it is injured, the part of the body it controls will also be damaged forever. Yet doctors will quietly admit that they do see cases that contradict the traditional theory about the brain. These cases might not be as dramatic as the girl who learned to speak Turkish and Dutch with only half a brain, but they show that even after a brain injury, a child can sometimes do things that no one expects. So how does the medical establishment deal with the cases that don’t fit the official story?

Largely, they are ignored. If physicians do pay attention to them, these extraordinary stories are dismissed as outliers. They don’t count.

It turns out that most physicians and scientists have difficulty with cases that don’t fit in with mainstream thinking. Even when the anomalies are brought to their attention by an unimpeachable source, they tend to shrug philosophically and confess that, you know, sometimes things happen that we can’t explain. Or they might think they don’t have the full story: data might be missing, the experimental model could be faulty, or the facts could have been misinterpreted. More often, they simply ignore the outliers and carry on working within the system as it stands, assuring anyone who asks that it has served them just fine, thank you very much, and they’re not about to change it. This happens all the time.

Why?

Thomas Kuhn, an American physicist and philosopher of science, explains why outliers, in all fields of scientific endeavour, are often ignored. In The Structure of Scientific Revolutions, first published in 1962,³ he explains that normal science, that is, the day-to-day work of scientific research done by most scientists, most of the time, rests on the acceptance of a broad understanding of the way things work. Outliers are ignored until researchers stumble upon so many inconvenient observations that they can’t ignore them anymore. For as long as they possibly can, they carry on with science as it’s come to be understood.

Picture a scattergram with a straight line drawn through it. The line represents the explanatory theory; the dots represent data. When the theory is new, almost all the dots are clustered close to the line: the theory is doing a satisfactory job of explaining the data. The distance between the line and the dots indicates the standard deviation from the mean: it’s expected. Physicists exploring water turbulence, meteorologists attempting to predict the weather, and so on, all know that there is variation. Not all data fit the theory perfectly. But as long as most of the data support the theory, the outliers can be discounted.

That is, until so many data points veer away from the mean that they can’t be ignored and the accepted theory becomes insupportable.

Kuhn’s insights apply to what I was taught about brain injury in humans in medical school and later in pediatric training. For a very long time, doctors and neuroscientists thought that human brain damage was permanent and irreversible. The occasional outliers like the little girl with half a brain were dismissed as fortunate exceptions to the rule that human brains had limited ability to change and heal. In the latter part of the twentieth century, the medical world discovered and gradually accepted a revolutionary new idea: our brains can regrow new cells, repair injuries, rewire new connections, and reallocate brain resources to restore lost function. This was neuroplasticity, and it sparked a true scientific revolution. It has shaken up many areas of medicine, especially adult neurology. As a result of improvements in diagnosis, early treatment, and later rehabilitation for adults with stroke, up to 30 percent of people with a first-time, mild stroke now may have a complete recovery, and their outlook is improving all the time.

Yet a baby with a similar stroke, with a brain injury in the same area of the brain as the adult, is expected to have the abnormal movement patterns that we associate with cerebral palsy (CP) for life. The official position of the National Institutes of Health in the United States that provides the most up-to-date information on neurologic diseases still maintains that cerebral palsy is a permanent disorder of movement and a condition with no cure.⁴

It makes no sense: an adult with a mild stroke may recover completely, but a baby with a similar mild stroke will not recover and instead have a permanent disorder of movement and posture called cerebral palsy. Changing the name of a condition from stroke to cerebral palsy does not change the reality that a young, growing brain should have a better chance of full recovery than an old, deteriorating brain.

I have spent my career as a neonatologist and clinical neuroscientist trying to understand this apparent contradiction. After training in pediatrics, I specialized in neonatology, caring for premature babies born early and full-term infants with complications arising from problems at or near the time of birth. During their stay in the Neonatal Intensive Care Unit (NICU), some of these babies developed various types of brain injury, documented on brain scans. I encountered a small number of outliers, babies with clear-cut damage to their brains who unexpectedly recovered completely. Those babies who recovered were and still are considered anomalies by most of my colleagues, but I saw so many of them that I became convinced the anomalies were actually the story, just as Kuhn had suggested.

These outliers prove, beyond any reasonable doubt, that baby brains can change and heal, even more than adult brains can. It explains why the boy with cerebral palsy whom I once treated can run but not walk properly. When he learned to walk, his brain was still damaged, so he developed an awkward walking gait. Yet by the time he learned to run, the parts of his brain that controlled both walking and running had healed and matured. So he could run like the other boys could. He could run, but his walking was still hampered, not by brain damage but by bad habits, just like the bad habits that plague the 22-handicap golfer.

It is time to reassess how neuroplasticity is expressed in the baby and young child. That is what this book is about: the anomalies that do not fit the prevailing theory that baby brain injuries are permanent and irreversible. Improving the outcome for these children will have a huge impact on childhood disability. Most people do not know that cerebral palsy is the most common motor disorder of childhood. There are close to a million cases of CP in the United States, with 17 million or more worldwide. This number translates into approximately one new diagnosis of CP made every hour in the United States.

This book is the story of how my colleagues and I gradually put together a new explanation of how early brain injury leads to the motor impairments that are collectively called cerebral palsy. Working with young children with documented brain injuries at or shortly after birth, I kept noticing the outliers, the children who functioned more or less normally despite having badly altered brains. Yet a question that took years to answer was why the motor problems of children diagnosed later with CP were so persistent. How could we fix long-established bad habits?

Throughout my career, I have been fortunate to have been taught by gifted teachers, mentors, and also parents of children with cerebral palsy who insisted their child was doing better than their doctors (including me) thought was possible. We found that we needed a different approach to both diagnosis and therapy for children with CP and other forms of early brain damage.

Many of the proven breakthrough treatments and adjustments to the existing system for treating children and adults with cerebral palsy draw on what we have learned from adult neurologic research and exercise science. We have found that this new approach has positive implications, not only for children and adults with the wide range of problems that are included within a cerebral palsy diagnosis, but also for patients with spinal cord injury, brachial plexus injury, and even post-polio syndrome. We know now that even severely affected children can expect some improvement. For those whose disability is mild, there is real hope of a full recovery. I have seen it happen. In these pages, you will too.

one

The Boy Who Could Run But Not Walk

Ifirst saw Daniel as a premature infant when I was a neonatology fellow at the Hospital for Sick Children (HSC, or Sick Kids) in Toronto. Daniel was born at twenty-six weeks. In the first week of his life, he developed a major bleed into the right side of his brain, damaging the areas that would normally control the left side of his body.

A twenty-six-week infant is tiny. Daniel at birth weighed 750 grams, about a pound and a half. When I started in neonatology in the 1970s, he would have had, at best, about a fifty-fifty chance of surviving. Daniel survived, but the common wisdom at the time was that the damage to his brain was permanent and would lead to disability. The expectation was that he would have difficulty with both gross and fine motor skills. We knew he had a brain lesion so he was started in therapy fairly early. To my surprise, the disabilities that developed in Daniel as he grew from infancy to childhood, as measured on a standardized scale of function, were not too bad. As I expected, he limped on the left side, landing on the front half of his foot, not his heel. His left arm hung at his side and did not swing normally when he walked. His right side was unaffected and his speech and cognition were normal. I diagnosed him with a left-sided hemiplegia, a type of cerebral palsy that affects the motor functions just on one side of the body. Hemiplegia is found in roughly 40 percent of all children with cerebral palsy, and, like Daniel, 99 percent of these children are able to walk.¹

The Neonatal Follow-Up Clinic, where I worked, tracked patients for only the first three to four years. Daniel had been discharged for several years when his mother phoned me with news. She told me he was now playing soccer, not just in a league that accepted children of diverse ability, but in a league for competitive, able-bodied children.

The hell he is, I thought.

What I said was, Oh?

I didn’t believe her. Daniel being able to play competitive soccer was outside my understanding of hemiplegia. I assumed, as many doctors would have, that an overly optimistic mother was seeing a degree of recovery that just wasn’t there. Still, I arranged for her to come in with Daniel so I could see for myself. When they came, I had him walk up and