For my son, care coordination wasn’t just a service, it was lifesaving
By: Miranda Burger
Editor’s Note: Miranda Burger, Program Manager at Olympic Community of Health, shares her experience as a new mother in rural Clallam County, navigating complex health care for her son. Miranda shares insights and reflections on the importance of a compassionate approach to care coordination, the examples of care that made a world of difference, and the ways she experienced unnecessary barriers. Care coordination is an important aspect to solving tough health issues in the Olympic region. By elevating community voices like Miranda’s, we can better understand the challenges and strengths of care systems.
I didn’t really understand care coordination until I needed it. That’s strange to admit since one of my previous job titles was “care coordinator.” I knew what care coordination was; I understood how care coordination could be valuable. But my understanding was always academic, a bit removed. Care coordination was something for other people who appeared to be incapable of navigating “the system”; it didn’t apply to me. And then my son was born.
My son was born in December of 2020. Hours after his birth he was discovered with low blood oxygen, received emergency lifesaving care, and was airlifted to a Seattle hospital where he was diagnosed with a critical congenital heart defect. My son required open-heart surgery within the first 6 months of his life. He underwent several tests, procedures, and interventions, spending 3 of his first 6 months in the hospital, mostly in the intensive care unit. In his first months at home, he needed multiple medications, at-home medical monitoring equipment, and intensive outpatient care. My son faced numerous life-threatening complications and we came very, very close to losing him.
My son’s diagnosis was unexpected, and my husband and I were completely unprepared for life with a newborn with very serious, complex medical needs. I was accustomed to successfully navigating and advocating for myself within systems. I understand health care (well, mostly). I have a high health literacy. My work in health transformation gave me insider tips to navigate the healthcare system. I am incredibly privileged, and I still found myself drowning.
During those early months, my husband and I met at least 5 different people who identified themselves as “care coordinator”.
It became impossible to track who was responsible for coordinating what. I was exhausted repeating myself over and over. There was no coordination amongst the people who were trying to coordinate my son’s care.
The best illustration of this crazy making is an early experience trying to fill one of my son’s medications: I went to my regular pharmacy to pick up my son’s medication for the first time where I was told the pharmacy does not accept the managed care plan my son was assigned to. My son needed his medication and I paid out of pocket, which I acknowledge is a privilege. I proactively found a pharmacy that accepted my son’s insurance before any refills were needed. I called ahead to prevent any hiccups and was assured they could fill the medication. When I tried to pick up the medication, the pharmacy told me the prior authorization wasn’t transferred and to call my son’s insurance. The insurance coordinator then told me to call the cardiologist. Finally, the prior authorization was sent. Then, the pharmacy told me their vendor doesn’t supply this particular medication. Again, I called the insurance care coordinator who suggested I drive to Seattle to fill the medication, over two hours from my home. I was beyond frustrated and began to panic that my son would run out of medication. At a loss, I called the cardiologist nurse who followed my son closely and within 15 minutes she arranged for the medication to be shipped directly to my house.
In an ideal world there would be one person, from my community, coordinating my son’s care. They would know the programs and services available where I live and would give me a warm handoff to those services. In an ideal world, this person knows my family and remembers details about my son’s history, so I don’t have to repeat myself. They understand that I’m bringing the traumatic experiences of my son’s medical journey with me and when I call anxious about refilling his medication it’s not just about his medication. This person meets my family where we are, both physically and emotionally.
There are bright spots in my family’s experience. I mentioned I called the cardiologist nurse – an exceptional caregiver who took time to visit us in my son’s room throughout our hospital stays, sometimes just to say, “hi”, called us at home, and never failed to return a call or follow up on a question. There is my son’s pediatrician who came to the emergency room to act as a medium between me and the unfamiliar ER staff and held my son while I cried in a moment of complete overwhelm. He named the deep disappointment my husband and I felt in the early days at home and made us feel “seen” for the first time since my son’s diagnosis. There is the woman who handled my son’s Medicaid application from start to finish ensuring everything went smoothly and the ICU nurse who prioritized bath time the day before my son’s surgery to offer my family a sense of normalcy. These bright spots are people who took time to get to know my family, to meet us where we were, and who built trust.
My family’s experience has been filled with, at times, conflicting emotions. Duality is difficult to hold. We are incredibly grateful for the excellent medical care my son continues to receive and we are frustrated by the many bureaucratic barriers. We deeply grieve our experience as new parents and feel so lucky our son is still with us and against all odds, thriving at home. Our experiences have offered me a greater understanding of my own privilege in systems, and I have been humbled many times along this journey. Most of all, we are thankful for the many wonderful people who have seen, heard, and cared for my entire family. For my son, care coordination wasn’t just a service, it was lifesaving.
Watch the video below to learn more about Miranda’s experience and the ways OCH partners across the region are creatively implementing care coordination.