Lessons Learned by a Frightened Dad

“Heart transplant? Who’s talking about a heart transplant? What is going on with our kid? What is going on with her?”
Benjamin Anderson was stunned. His 30-day-old daughter, Naomi, had developed supraventricular tachycardia (SVT), a rare condition in one so young.
In the hours since they were admitted to the small Ashland County Health Center emergency department, no one had told him or his wife Kayla much of anything about what was happening.
Ashland did not have the resources to deal with this case, so they flew Naomi from Ashland to a hospital in Wichita.
And now a nurse there was telling these new parents that their daughter may need a heart transplant. They should get her to Denver Children’s Hospital.
“How did it to come to this?” he thought. “And we were not involved? What is going on?”
At the time of his daughter’s illness, Anderson was CEO of Ashland County Health Center, the only health provider in a Kansas town of 900 people.
But in this situation, he was just a scared and confused dad, ignored in the corner, while the room filled with specialists and nurses and students.
On September 13, 2019, Anderson spoke of his personal experiences at the VAHHS Annual Meeting. He used stories to illustrate the thinking that led him to dramatically revitalize Ashland Community’s Health Care services, recruiting and retaining several medical providers to serve a multi-county area between Kansas and Oklahoma.
As Anderson said, “The thing that happens in healthcare is that health literacy goes out the window when it’s your kid. I mean, I’m a hospital CEO. I know how this stuff works, right? But I’m voiceless when it’s my kid, and I’m a new father, and I’m watching my daughter seemingly suffering, and I can’t figure out what’s going on, and no one’s really sharing this stuff with me.”
As luck would have it, close family friend Dr. Naomi Hill (for whom their daughter is named) was visiting the Wichita hospital. She provided the support and guidance that the Andersons needed.
Dr. Hill told them, “Every parent has the right to be involved in the plan of care of their child. That is non-negotiable. They need to communicate what’s going on with you.”
So the Andersons decided to transport Naomi to Denver Children’s Hospital, where she recovered with no heart transplant needed.
Benjamin stayed at Denver with Naomi for six days. During that time, the staff consulted him on every single decision regarding his daughter’s care. For six days, the pediatric cardiologist explained the plan of care and then asked, “Do you have any questions? Is this OK with you?”
In Ashland at that time, there were barely any such systems in place. In Wichita, the system left the parents out of the equation. But at Denver, the young father was included at every step.
The lesson he learned from his experience, as a father with a sick child, is clear.
“Every patient or family member deserves to participate in a collaborative process that allows patients and their providers to make health decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences,” he explained.
As he left the Denver hospital with his daughter, Benjamin wondered, “So what if it didn’t have to happen this way? What if improved coordination through care partnerships would have prevented much of her suffering? What if I, as CEO of the [organization that provided the] first third of her care experience, could have prevented much of her suffering? What if I had set that stuff in place?”
He turned to that task when he returned to his rural health center.
Anderson currently serves as CEO at Kearny County Hospital, a comprehensive rural health complex in southwest Kansas, where he has also turned the lessons he learned as the father of a patient into action.
He grew up in an urban community on the west coast and endured poverty during some of his childhood years. These formative experiences have played a significant role in his commitment to equity and justice, with particular attention toward underserved and marginalized people.
Since arriving at Kearny, Anderson has received national acclaim for his work in physician recruitment, health promotion, women’s health initiatives and rural healthcare delivery innovation. He was named to the 2014 Modern Healthcare Up-and-Comer list.
Kearny County Hospital serves a very diverse population in a very remote and conservative area of the United States. The world’s largest beef packing plant is fifteen miles east in Holcomb, Kansas. People from thirty different countries work there, and they deliver their babies in this hospital.
Anderson’s mentor, Sister Mary Jean Ryan, a Catholic nun who is part of SSM Health, a Catholic, not-for-profit United States health care systemin St Louis, is a relentless advocate for quality.
Anderson has learned from Sister that, “Systems heal people. And systems harm or kill people, more than a good doctor or a bad doctor, the right or wrong diagnosis, the right or wrong prescription. Systems, full of well-intended people, actually harm people. If we know that there are things that we can do to improve systems, then we must do them. “
He and his staff have accomplished extensive change and expansion by asking questions of community members.
What outcome needs improvement?
Which stakeholders are involved?
Where are the opportunities to share?
Why isn’t it already happening?
How do we measure success?
When do we expect to see progress?
From the answers, they create a strategy and then implement the plan. And repeat. Now what outcome needs improvement?
Kearny County is mostly white and Hispanic, with more diversity in the surrounding counties.
From their questioning of the community, the staff found that in every category, the white population was more aware of resources available than the Hispanic population—and that the Hispanic people wanted more access to care.
The staff realized if a service isn’t available in a language people can understand, or at a time that they can access it with shift-work, or in a way that is culturally acceptable for them to receive it, it doesn’t exist at all.
Anderson noted, “We don’t get a pass because we are rural. We don’t get to exempt ourselves from the quality discussion because we are rural. We must voluntarily hold ourselves accountable to outcomes, not separating rural from others.”

Anderson said he believes that “at the end of the day, this work is about people. These outcomes are tied to people and loved ones.”