Against All Odds: A Child’s Journey to Safe and Dignified Care

Against All Odds: A Child’s Journey to Safe and Dignified Care

– The Team PRPCS, Hyderabad

Uday (name changed) was born into a financially challenged family, bringing with him hopes and dreams, as the birth of any first child so often does.

However, these hopes were soon tested when he was diagnosed with Cerebral Palsy, a severe neurological condition. In their search for answers, his parents attributed the condition to consanguinity.

In a deeply distressing turn of events, Uday’s mother left home when he was just one month old, leaving him in the care of his father and grandparents. Unable to cope with the child’s complex needs, the father too withdrew, and Uday was left 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 profound developmental delays—he could neither see, hear, speak, nor hold his neck. Feeding and basic care required constant effort and vigilance. During this time, he was identified by our team at Niloufer Children’s Hospital in Hyderabad, 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 related to his swallowing difficulties. During episodes of severe symptoms, he was admitted to Mandara Hospice, Kukatpally, Hyderabad 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 signs of neglect—missed medications, inadequate feeding, and poor overall care—leading to a worsening of his condition, including refractory seizures.

Our team persuaded the father to bring Uday to the hospice and entrust him to our care. Recognizing the urgency, the father brought him back to the hospice and left him under the care of the pediatric palliative team. After careful consideration, and under the guidance of Gayatri Palat, it was decided that Uday required long-term institutional care to ensure his safety and well-being. Efforts were made to admit him to Shishuvihar, a government-run orphanage; however, admission was initially declined due to his complex medical needs.

Through sustained advocacy and networking efforts by PRPCS with senior state government officials, admission was eventually secured. On 16 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 an unwavering commitment to the child’s well-being. Thanks to the collaborative efforts of the teams at Niloufer, the home care services, and Mandara Hospice, Uday now has a safe and dignified place to live.

This case stands as a powerful example of a holistic palliative care approach, addressing the total suffering of a child with sensitivity and sustained care.