From Abandonment to Assurance
Uday (name changed) was born into a poor family with hopes and dreams like any other first child. However, those dreams were soon challenged when he was diagnosed with Cerebral Palsy, a severe neurological condition. In their search for answers, the parents attributed the condition to consanguinity.
In a deeply distressing turn of events, when he was just a month old, his mother left home leaving Uday in the care of his father and grandparents. Unable to cope with the child’s complex needs, the father too stepped away, leaving him in the care of his elderly grandmother—a widow who had already endured significant loss. Despite her circumstances, she embraced the child with immense love and dedication, raising him as her own.
Uday had severe developmental delays—he could neither see, hear, speak, nor hold his neck upright. Feeding and basic care required constant effort and vigilance. It was around this time that he was identified by our team at Niloufer Children’s Hospital and enrolled in the pediatric palliative home care program. The team regularly supported him with seizure control, pain management due to contractures, and prevention of aspiration, given his difficulty in swallowing. During episodes of severe symptoms, he was admitted to Mandara Hospice for acute care.
Tragedy struck again when his grandmother was diagnosed with cancer and, despite her fight, passed away. Uday was then left in the care of extended relatives, with minimal involvement from his father. During a routine home visit, our team observed alarming neglect—missed medications, inadequate feeding, and poor overall care—which led to worsening of his condition, including refractory seizures. Our team persuaded the father to bring the child to the hospice and leave him to our care.
Recognizing the urgency, the father brought Uday back to the hospice and left him under the care of the pediatric palliative team. After careful consideration, and under the guidance of Dr. Gayatri Palat, the team decided that Uday required long-term institutional care for his safety and well-being. Efforts were made to admit him into Shishuvihar, a government-run orphanage. Initially, admission was denied due to the child’s complex medical needs.
Thanks to the networking efforts of PRPCS with senior state government officials, we could secure the admission at Shishuvihar. On 16th March 2026, Uday was admitted to Shishuvihar, where he now has access to consistent care, nutrition, shelter, and medical support. He will continue to be followed up by the pediatric palliative home care team, ensuring continuity of care.
This journey reflects the true essence of pediatric palliative care—compassion, persistence, and unwavering commitment. Thanks to the collaborative efforts of the teams at Niloufer Hospital’s Home Care Services, and Mandara Hospice, Uday now has a safe and dignified place to live.
This is the perfect text book example of holistic palliative care approach encompassing and addressing total suffering of a child.
– Team, Pain Relief and Palliative Care Society
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