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A Family's Perspective - Pediatric Palliative Care Stories

The National Institute of Nursing Research extends its sincere gratitude to all of the families who volunteered their personal stories for this collection and the overall Palliative Care: Conversations MatterTM campaign. It is our hope that sharing these experiences will help others understand and seek palliative care for their children and families.



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. Read more...



When I learned that my son, Avery, had a “life-limiting” illness, I felt that I had again failed as a mother. Why? I had previously lost three babies before they even had a chance on this earth, and I was now hearing that the life growing inside me was “more than likely never going to make it.” If he did, the prognosis was very grim. Avery was diagnosed with two very rare brain conditions, schizencephaly and Walker-Warburg syndrome. Read more...



My son, Jake, is a beautiful 19-year-old, who suffers from mitochondrial disease and Dravet syndrome. These life-limiting, progressive diseases have no cure. Jake is developmentally delayed, has significant medical needs, and has hundreds of seizures per year. He lives at home with his family, and despite obvious challenges, Jake is generally a happy and loving child who enjoys a good quality of life. Read more...



“What do you want for Molly's life?” As I sat in the children’s hospital, that question stopped me in my tracks. It led me to consider all of the hopes and dreams of my then seven-year-old daughter, to cherish each moment, and to think about making the most of her life. Just a year and a half earlier we learned she had severe pulmonary hypertension. Read more...

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