My journey began nine years ago when our third child, Wade, was born with Pfeiffer Syndrome. As I wrote about in a previous blog, little Wade had a rough start, spending the first three months of his life in the Neonatal Intensive Care Unit (NICU), followed by many surgeries and hospitalizations. It was a difficult moment for our family as we were thrown into a crazy world of hospitals, doctors, surgeries, and specialists. It was like we had stepped onto another planet with its own language and ways of doing things, completely different than anything we had ever known.
Being in a hospital can be isolating. As a patient or a parent, sometimes—most of the time—you're the last to know the plan, even though you are the one living it. Many times I sat in Wade’s hospital room questioning my own ability to care and speak for my son because no one asked what I thought.
Fed up with struggling to be heard, I decided to go to nursing school. I was determined to get a degree—I wanted some letters behind my name so that someone would listen to me, and so that I could be part of my own son's team. I did not yet fully understand that I am his team.
In My Shoes
In 2014, I proudly began my position as a nurse in the NICU at Texas Children's Hospital, caring for babies just as my son had been cared for in that NICU seven years earlier.
One day I came across a blog post by our CEO called, “In Their Shoes” in which he argued that in order to provide outstanding care to patients and families, clinicians must consider what it is like to walk in their shoes. I was elated because he was acknowledging what I had needed all those years before—someone to recognize my role on the healthcare team and engage me in my son’s care. I emailed him to introduce myself and tell my story, and was invited to meet with him the next week. During our meeting, I showed him pictures of my family, sharing our story and my perspective on improving connections with patients and families under the hospital’s care. I was subsequently asked to share my thoughts with various clinical and non-clinical executive and leadership groups in the hospital. I quickly realized that many of the executives that I spoke to didn't understand what I had gone through as a parent: they were unprepared to walk in my shoes.
Shoulder to Shoulder
I started inviting our executive team to join me in the NICU for “shadow visits.” I wanted them to walk in the shoes of the patients and their families, to be immersed in the NICU’s sights and sounds, to be thrown off balance as I had been, not knowing what was going on or even which direction to walk. In 9 months, 43 executives and leaders shadowed me at the bedside. Each of them spent 3 to 4 hours standing shoulder to shoulder with me as I received morning reports, did my first assessments, stabilized my patients, and attended rounds. As often as I could, I would have them put on the stethoscope and listen to the little heartbeats so they would experience a direct connection with the babies in the NICU. As I walked them through the unit, I pointed out things that had confused me as a parent. Because what I had had as a parent was a human experience, and in order for them to really get it, I needed them to have one, too.
Boardroom to Bedside
I also had the opportunity to shadow our CEO. I learned that the care I experienced as Wade’s mother began as a corporate vision for what patient and family care should look like. When hospital leaders have meaningful connections to the daily experiences of patients, families, and clinicians, I believe that their corporate vision will incorporate a culture of patient- and family-centered care. The shadow visits I initiated provided a unique opportunity for the hospital leadership to occupy the same space as the people that the hospital is designed to serve, allowing them to walk for a moment—if only briefly—in their shoes.
Today, those first shadow visits have evolved into the Executive Rounding Program at Texas Children’s Hospital. The program offers executives and leaders opportunities to bridge the space between the boardroom and the patient’s bedside. By connecting them with the actual healthcare experiences of patients, families, and clinical staff, the hope is to foster a culture in which every patient and family member feels empowered to participate as an integral part of their medical team. Because, for healthcare to be effective, everyone—hospital leaders, clinicians, and the patients and families themselves—needs a seat at the table.