Updated: April 15, 2019
By: Sadie Dobrozsi, MD MS, pediatric medical oncologist and John Cox, MD, pediatric emergency medicine, Owen’s parents
We last shared Owen’s story a year ago and today, we want to update you on Owen and his family
Owen will turn 3 this July. His greatest loves are playing his guitar and doing whatever his older brother is doing. Owen was born with myelomenigocele at the L5-S1 level. In his short life, he has had 5 neurosurgeries, 5 emergency department visits, 71 outpatient clinic visits, has had 150 hours of physical therapy, 75 hours of speech therapy, had 48 imaging studies, underwent 9 procedures, has been straight-catheterized more than 2,400 times, and has spent 38 nights in the hospital including 3 intensive care unit stays. Most notably, he also learned to walk independently and is currently working on learning to walk upstairs.
In addition, to his older brother, Owen has a new adopted baby sister.
Our son Owen is 21 months old. He loves the ABCs, string cheese, and his older brother. Owen was born with myelomenigocele at the L5-S1 level. In his short life, he has had 5 neurosurgeries, 4 emergency department visits, 35 lab draws, 41 imaging studies, 100 hours of physical therapy, 24 hours of speech therapy, 42 outpatient clinic visits, and has spent 38 nights in the hospital. He has physicians in seven different specialties. Managing his medical care is a daunting task, one familiar to all parents of children with complex medical needs. We have clinic telephone numbers on speed dial, know pharmacy hours by heart, and have learned to balance conflicting medical advice with our own parental intuition.
This should be easy for us. As Owen’s parents, we know him best. We also are both pediatricians. We live 10 blocks from the hospital. We work in the same building, side by side, with all the physicians and medical teams who manage his care. We understand the inner workings of the medical system. We speak their language. We have insight into the logistic hurdles most have no control over and can effortlessly bypass them for our son. When we hand our son over to anesthesiologists and surgeons we are handing him to trusted colleagues and friends.
And yet, this is not easy. It is downright hard. We struggle with the countless ways we must continually advocate for our son due to systematic failures while trying to manage the day to day details of our lives. Access to health care is complicated and too much medical care is dictated by what health insurance will or will not cover. Prospective research to develop evidence-based practice to direct his care is limited, and funding for research remains in jeopardy. The protections he needs from the Americans with Disabilities Act and the Department of Education to ensure that he is given every opportunity to develop independence, grow, and thrive along with his peers should be expanded but instead are at risk of being removed.
Our position of privilege as pediatricians makes us painfully aware that our personal struggles are not unique and that we have an easier time navigating this world for our son than most. We watch the patients we care for face worse with fewer supports and higher hurdles. It is easy to feel frustrated and powerless to affect change for Owen and others.
And then we watch Owen. We watch him recite the steps of his catheterization routine and joyfully yell, “Pee Out!”, as the task is complete. We hold his small hands as he stumbles over and over again trying to put one foot in front of the other, tongue stuck out in determination. We hear his sweet laugh and appreciate his quiet but unequaled determination to slowly chip away at the task in front of him.
Owen doesn’t yet have his own agency through which to influence national priorities to support children and families with complex illnesses. We are attending Teal on the Hill to raise his voice and carry his quiet, undeterred resolve forward. Our elected officials in Congress cannot prioritize or fight for the lives they cannot see and so we will shine our light on Owen, those who have come before him and those whose stories have not yet begun to bring visibility and urgency to the legislative issues impacting their lives.
Sadie Dobrozsi, MD MS
John Cox, MD
Pediatric Emergency Medicine
Inspired? Join Owen and his parents at Teal on the Hill, May 6-8, 2019