Photo: Nathan and his parents.
New video highlights a family receiving palliative care in Buffalo, New York
The National Hospice and Palliative Care Organization is pleased to release a new video called My Support, My Hospice: Nathan’s Story. The video features Nathan Pitillo and his parents Greg and Becky. 21-month-old Nathan is receiving care from Hospice and Palliative Care Buffalo and is supported through the program’s Essential Care for Children. The video showcases the vital necessity for pediatric hospice and palliative care services and the need to support this unique patient demographic.
Nathan was born with microcephaly, a congenital condition associated with abnormal brain development. He was also diagnosed with lissencephaly, a rare brain disorder. He began receiving hospice services through Hospice and Palliative Care Buffalo immediately following his birth. While under their care, Nathan’s condition stabilized, and he was moved to palliative care. He and his family continue to receive nursing and social work visits and utilize the program’s expressive therapy services including music and massage therapy.
Nathan’s parents are incredibly grateful to Hospice and Palliative Care Buffalo and believe that through the program’s support, they were able to bring Nathan home and care for him.
“I think that a pediatric hospice program is incredibly important because without it, I honestly don’t think that we would’ve been able to take Nathan home at two weeks of age and be comfortable enough and confident enough in ourselves to take care of him properly,” says Becky Pitillo. “I think it empowers you as a parent, you know the diagnosis, but having somebody there to walk you through everything gives you the strength to work through it and give him the best life that he can have.”
“Hospice and Palliative Care Buffalo provides pediatric care that is tailored to the unique needs of its pediatric patients,” says NHPCO President and CEO Edo Banach. “Pediatric patients are unique and may require a specialized type of care different from the care provided to the adult patient population. Hospice and Palliative Care Buffalo’s supportive care extends to the parents and siblings of the patient, who are often struggling emotionally and coping with a child who is seriously ill.”
NHPCO is committed to improving access to hospice and palliative care for children who are seriously ill. NHPCO’s Pediatric Advisory Council includes members who are experts in pediatric hospice and palliative care. They provide strategic guidance to the organization about this specialized delivery of care and produce several resources including the Pediatric E-Journal, pediatric hospice and palliative care educational offerings, and the Pediatric Standards of Care for Hospice Programs. Learn more about NHPCO’s pediatric resources.