As 2015 begins to dissolve into distant memories, we are afforded opportunities of reﬂection for the people and experiences we hold closest to our hearts.
Paediatric Hospice and Palliative Care is not a service one would expect to be on a gratitude list. Initially, the care we offer to families is received with anxiety, thoughts of extinguished hopes, and a myriad of tangled emotions. Our team members acknowledge that we are the last people that parents wish to meet. However, there are families that become advocates for paediatric hospice after experiencing the value it adds to life.
I am honoured to share Logan’s story with you, and how this year, in spite of fresh grief, Paediatric Hospice is on his family’s list of blessings this year.
Logan was born with hydranencephaly, a diagnosis that his parents, Katherine and Kyle, were aware of before his birth. They diligently studied up on Logan’s prenatal condition, discovering that hydranencephaly is considered incompatible with life. Naturally, with such a diagnosis, there were physician led discussions surrounding discontinuation of the pregnancy. For Logan’s parents there was never a moment of hesitation. Katherine and Kyle were committed to the pregnancy of their ﬁrst born, relying on their faith as they awaited on the arrival of their cherished son.
Logan entered our world at a robust weight of 8 pounds 5 ounces. His diagnosis was conﬁrmed shortly after birth as his tightly knit family gathered to ensure they were present for every moment of his life. Logan astonished his physicians and family with spontaneous smiles, engaging with loved ones, and vigorously crying when hungry. Logan’s determination to live became evident to everyone. Katherine and Kyle were delighted to bring their boy home. Logan and his family joined our home paediatric hospice program upon discharge from the hospital. His sparkling blue eyes and desire to absorb every ounce of life endeared him to every soul he encountered.
Of course, the challenges associated with hydranencephaly requires multiple medications daily, close and frequent clinical oversight, and special accommodations to his home. For any infant, it would have been easy to be overwhelmed and cranky with all that was required to keep Logan at home and comfortable. However, it was as if Logan was mindful of his brief time on earth. He was intent on experiencing his life joyfully and gratefully. Logan’s mother, Katherine, and I met for coffee a few weeks ago. She is only 22 years old, but her eyes portray the type of wisdom that one acquires over a lifetime. She openly shares Logan’s story with others, she is a paediatric hospice advocate, and wishes to share the reasons paediatric hospice is a gift her family will be forever grateful for.
Logan enjoyed 10 months of life surrounded by family within his loving home, under the gentle watchful eyes of the family’s senior dog, Hank. Katherine and Kyle claim that one of the most treasured gifts hospice provided was time. Katherine clariﬁes, “Of course, hospice did not add time to Logan’s life. Hospice was able to expand the time we were given. We were not draining moments of his life shufﬂing him back and forth to physician ofﬁces. His medical team came to our home. Our family time was honoured. Hospice protected our most valuable resource, time with our boy.”
Katherine and Kyle were eager to learn how to best care for their son at home. With the guidance of our hospice team, they seamlessly developed into conﬁdent caregivers. Katherine voices gratitude that Logan’s symptoms were effectively managed, allowing him to remain where he was happiest – at home. Katherine conﬁdently states, “I was amazed at the peace that surrounded us throughout Logan’s life. Hospice was an ongoing presence and only a phone call away should a need arise. To our family, hospice provided the gift of reassurance.“ Katherine humbly speaks of a gift that a mother never wishes to receive, ”The hospice presence and medical care provided to Logan as he was passing, allowed us the gift of being fully present for Logan as his life gently came to an end. Hospice honoured Logan during his life, his death, and with bereavement support that continues to be a resource for our family.”
Katherine and Kyle remain grateful Logan spent his last days in his room where he loved and lived his life, surrounded by his favourite blankets, toys, people, and dog. Katherine, lovingly creating a familiar environment, was able to read Logan’s favourite bible story books to him, snuggling him close, as he quietly passed away in her arms. Logan’s passing was family centered, life honouring, and hospice supported.
This year, we remain grateful for Logan and his family. Logan taught us that a full life has nothing to do with the number of years we live. Logan’s life was full of joy, full of hugs, full of purposeful memories, and full of faithful family members. Yes, Logan’s life was much too short. Logan’s life contained challenges that emerge with a life limiting illness. However, Logan’s life demonstrated the beauty of what a full life entails.
About the author
Lanise Shortell works with The Children’s Program of Hospice Atlanta in Atlanta, Georgia. Her passion for paediatric hospice and palliative care began 38 years ago. Her brother, Miles, suffered a traumatic brain injury due to a motor vehicle accident. In those days, limited options were available for families. She finds great comfort in watching family centred hospice and palliative care become more accessible to children around the globe.