Pediatric Palliative Care Stories: Levi

Levi

My son, Levi, was born with severe brain damage. After three weeks in the neonatal intensive care unit, the doctor encouraged us to care for Levi at home with the support of a palliative care team. My husband and I were excited to leave the hospital, but frightened to care for our first child who also had medical complexities.

When we got home, our nurse and social worker were waiting. They stayed for a long time, helping us navigate those first fragile moments and building our confidence. Daily the nurse returned to help with questions and fears. He taught me to observe, care for, and communicate with Levi. He also helped me understand that I am my son’s expert and advocate.

Our team used thoughtful questions to help us identify our values and make decisions about care for Levi, both daily and in an emergency. We worked through must-do and must-avoid lists. Our team also helped us understand the connection between the body, mind, and spirit.

When he was six months old, Levi caught pneumonia. Our team helped us with the details of how to care for him in a way that supported our care plan. Thanks to our team, we avoided hospitalization during a difficult two months.

Levi received home-based palliative care for four years as we gradually became more confident in caring for him. We spoke to a chaplain about our faith and the hard realities of parenting Levi. We engaged a respite volunteer who learned how to care for Levi. We welcomed music therapy as a way to increase his comfort and joy, and to address issues like anxiety, pain, and sibling play.

What does palliative care mean to us? A team of people who know Levi – his history, care plan, challenges, and what may lie ahead. It means people who know me – my personality, preferences, and fears. It means a team we can call upon anytime. It means customized care with creative approaches that consider our values, culture, structure, and faith.

Palliative care also means fewer hospitalizations, which are expensive, exhausting, and risky. Levi has only been hospitalized three times in his five and a half years. Less hospitalization is one of many ways our team supports emotional and financial “savings” in our lives.

Levi was not expected to live beyond a few days let alone long enough to form a relationship with his younger brother. I can honestly say, without the partnership of Levi’s team, he would not be alive today and enjoying such a high quality of life. We believe palliative care should be the standard of care for all families.

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