When we began our journey with Harley, we had no idea how much of our lives would become centered around doctors, therapies, and the search for answers. By the time Harley turned three, he had already undergone three medical procedures. Simultaneously, early intervention therapies ramped up, and we found ourselves thrust into the overwhelming and often confusing world of medical care.

The Early Days: Seeking Answers

As Harley’s developmental delays became apparent, we dove headfirst into the medical field, consulting a myriad of specialists and experts. At one point, Harley’s care team consisted of 11 different doctors. These included:

Pediatrician
Developmental Pediatrician
Pulmonologist
Cardiologist
Geneticist
Psychologist
Ophthalmologist
Neurologist
Orthopedic Specialist (Shriners Hospital)
Gastroenterologist
Urologist

In addition to managing this extensive team, we also coordinated with physical, occupational, and speech therapists, who worked with Harley weekly. Our schedule became a rotation of appointments, typically every three months for follow-ups, consultations, and evaluations. Life became a whirlwind of medical charts, therapy progress reports, and constant hope for solutions to improve Harley’s quality of life while my wife both worked full-time at our corporate jobs.

The Spectrum of Care: The Good and the Not-So-Good

Over the years, we encountered a wide range of medical professionals. Some were compassionate and insightful, providing critical recommendations and support that have had lasting impacts. Others, unfortunately, left us frustrated and questioning whether our time was well spent.

The Exceptional Doctors

Developmental Pediatrician: This doctor and his team were a beacon of hope. They truly listened to our concerns, took the time to understand Harley, and provided thorough evaluations. It was through this developmental pediatrician that we learned Harley is also on the autism spectrum. While this additional diagnosis was initially hard to process, it opened doors to numerous resources, programs, and insurance coverage that wouldn’t have been accessible otherwise. This doctor’s guidance remains invaluable to us.
Neurologist and Ophthalmologist: Both were instrumental in helping us understand Harley’s unique needs. Their expertise and dedication stood out, offering insights that improved Harley’s therapies and day-to-day life.

The Challenging Experiences

Initial Pediatrician: Our first pediatrician failed us in a significant way. Despite Harley’s missed milestones, this doctor never mentioned Early Intervention. It was only through a neighbor’s suggestion that we learned about the program, which turned out to be a game-changer for Harley’s development. This oversight delayed crucial support during a critical window of time.
Geneticist: Delivering Harley’s diagnosis of Pitt Hopkins Syndrome was understandably a difficult moment. However, the geneticist’s approach was devastating. The very next day, she advised us not to have high expectations, stating that Harley would never walk. Her bluntness was both crushing and motivating. That moment fueled our determination to explore every possible option for Harley’s future

The Weight of a Team

Coordinating care with such a large team of specialists wasn’t just about managing schedules; it was about balancing emotional and physical exhaustion with the need to stay focused on Harley’s progress. While some appointments brought new hope, others left us feeling disheartened. Yet, through it all, we remained committed to finding the right path for our son.

Lessons Learned and Key Takeaways

Advocacy is Essential: As parents, we learned that no one would advocate for Harley’s needs better than we could. Asking questions, seeking second opinions, and pushing for referrals became second nature.
Early Intervention Matters: Despite the initial oversight from our pediatrician, Early Intervention became a lifeline for Harley. For families navigating similar journeys, I can’t stress enough the importance of starting therapies as soon as possible.
Not All Doctors Are Created Equal: Some doctors will go above and beyond to help, while others may fall short. Finding the right team is crucial, and it’s okay to move on from professionals who don’t align with your child’s needs.
A Diagnosis is Not a Definition: The geneticist’s grim prognosis could have been paralyzing, but we chose to see it as a challenge rather than a limitation. Harley’s journey has taught us that the human spirit—and a parent’s love—is far more powerful than any diagnosis.
Build a Support Network: Whether it’s family, friends, or other parents in similar situations, having a support system makes the journey less isolating.

Looking Ahead

Reflecting on these experiences, we’ve grown stronger as a family and more determined to give Harley every opportunity to thrive. We’ve also gained a wealth of knowledge and resources that we hope to share with other families through 4titude.

Excitingly, we’re launching the 4titude podcast soon. One of our guests will be the developmental pediatrician who had such a profound impact on our lives. Sharing these stories and lessons is part of our mission to build a community where no parent feels alone in their journey.

Final Thoughts

Navigating the medical world for a child with unique needs is challenging, but it’s also a journey filled with resilience, growth, and hope. For families walking a similar path, remember that you’re not alone. The road may be difficult, but with the right team and unwavering determination, the possibilities are endless.

About Kirby
As the founder of got4titude, Kirby is dedicated to empowering fathers and families raising children with disabilities. Through personalized life coaching, curated resources, and a supportive community, his mission is to create a space where dads feel seen, supported, and equipped to thrive.

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Navigating the World of Medical Advice: Harley’s Team of Doctors and Early Interventions