Photo Credit: Cincinnati Children's Hospital Medical Center

Introduction

As the co-author of “Equitable Care for Children with a Tracheostomy: Addressing Challenges and Seeking Systemic Solutions” and “100 Things I Wish Someone Would Have Told Me: Everyday Challenges Parents Face While Caring for Their Children with a Tracheostomy,” I set out to explore two deeply interconnected aspects of pediatric tracheostomy care: the systemic barriers that families face and the daily realities of caregivers managing complex medical needs.

What I found, however, was far more profound than I expected. Writing these papers wasn’t just an academic exercise—it was a journey into the lives of caregivers, clinicians, and advocates. Their stories revealed a tapestry of resilience, frustration, ingenuity, and hope. These voices not only taught me about the cracks in our healthcare system but also gave me a renewed sense of urgency to push for solutions.

Here’s what I learned:

1. The Invisible Weight of Systemic Inequity

One of the first revelations was how deeply inequities in healthcare access affect families of children with medical complexity (CMC). These inequities don’t just create frustration—they can mean the difference between stability and crisis, safety and danger.

Take Medicaid, for example. While it is a lifeline for many families, its limitations can be devastating. One caregiver shared how she was only allowed one tracheostomy tube per month for her child, forcing her to sanitize and reuse devices intended for single use. Others spoke of receiving insufficient quantities of basic supplies like trach ties, which had to be washed repeatedly despite not being designed for that purpose. These actions weren’t choices—they were acts of survival.

Transportation also emerged as a critical barrier. Families in rural areas described missing follow-up appointments due to the distance or lack of access to reliable transport. One father shared that his family had to rely on emergency helicopter transport to reach the nearest hospital during crises because driving simply wasn’t fast enough.

These stories reinforced a hard truth: social determinants of health—things like income, location, and access to reliable transportation—don’t just impact care; they define it.

2. Caregiving: A Job with No Training Manual

In “100 Things I Wish Someone Would Have Told Me,” caregivers vividly described to me how their lives changed the moment they brought their child home. Many felt ill-prepared for the immense responsibility thrust upon them. One mother, shaking with fear, described her first solo tracheostomy tube change: “It was terrifying to know I had to do this myself at home, without a team of doctors around me.”

The gaps in discharge training became a recurring theme. Caregivers felt their hospital training didn’t reflect real-life situations. Emergencies like mucus plugs, accidental decannulations, or power outages were barely addressed, leaving families to figure it out on their own.

Caregivers also spoke about the mental toll of constant vigilance. As one parent put it, “Every day was a guessing game.” They struggled with balancing daily care tasks, managing equipment, and addressing their child’s evolving medical needs—all while trying to maintain some semblance of normalcy for other family members.

What struck me most was the profound sense of isolation many caregivers felt. Peer support was a lifeline for some, but it was often self-organized and difficult to access. Social media groups became critical for emotional connection and resource sharing, yet they were also a double-edged sword, exposing parents to a constant stream of worst-case scenarios.

3. System Failures Aren’t Just Frustrating—They’re Dangerous

The systemic issues caregivers described go far beyond inconvenience—they pose real risks to children’s safety. Durable medical equipment (DME) companies were a major source of frustration. Parents recounted denials of critical supplies, like specialized tracheostomy tubes or innovative equipment that could improve their child’s quality of life. One caregiver turned to eBay to purchase used medical supplies when her insurance wouldn’t cover them.

The shortage of skilled home health nurses compounded these challenges. Caregivers spoke of poorly trained nurses who struggled to handle emergencies, leaving parents feeling they couldn’t step away for even a moment. One grandmother described an incident where a nurse failed to recognize a life-threatening mucus plug, resulting in a frantic call to 911.

These stories underscored the fragile ecosystem families navigate—one where a single breakdown in the system can have life-or-death consequences.

4. Resilience and Innovation: The Bright Spots Amid the Challenges

Amid these struggles, I was inspired by the resilience and ingenuity of caregivers, clinicians, and advocates. Parents, in particular, showed remarkable creativity in finding solutions to systemic gaps. They exchanged supplies in Facebook groups, built their own informal peer support networks, and shared tips on how to adapt equipment to better meet their child’s needs.

Clinicians, too, are working to bridge gaps. Programs like Trach Me Home at Children’s National Hospital, developed by Hannah Greenlick-Michals, MSHS/RS, BSN,RN,CPN, offer immersive training and transitional housing for families. Trach Me Home is a great example for how hospitals can better prepare caregivers for the realities of home care. Local initiatives like mobile clinics and subsidized transportation services are helping families in rural areas stay connected to care.

Policy reform remains a critical need, but these grassroots efforts demonstrate the power of innovation and community in the face of systemic challenges.

5. A Call to Action: We Must Do Better

Writing these papers left me with a renewed sense of responsibility—not just to document these issues, but to advocate for change. The stories I heard make it clear that we must address the systemic barriers that burden families:

• Modernizing Medicaid: Reimbursement policies must align with current medical technologies to ensure families have access to the equipment they need.

• Investing in Training: Discharge education for caregivers and training for home health nurses must be comprehensive and tailored to real-life scenarios.

• Expanding Peer Support: Hospitals should formalize peer support networks, connecting caregivers to others who have navigated similar journeys.

Above all, we must listen to families. Their experiences illuminate the path forward, offering invaluable insights into what’s working—and what desperately needs to change.

Conclusion

Over the course of this research, I learned that methods to identify tracheostomy complications in patients that require full-time artificial ventilation rely on built-in ventilator sensors to detect most breathing complications, but for individuals who can spontaneously breathe on their own through tracheostomy tubes, there are no medical technologies available that can effectively sense a decannulation or obstruction event. The outcome from this research is a new patent-pending product I am co-developing with engineers called Trach Sense: A life-saving wearable and connected tracheostomy CO2 monitor. I hope these papers contribute to the broader movement to create equitable, compassionate care for children with medical complexity and their families. Change won’t happen overnight, but together, we can build a system where no caregiver feels alone and every child receives the care they deserve.