St Jude Centres for child amputees keep hope alive in multiple ways
When Prince Prasad's mother in Nawada, Bihar, heard that his left leg would have to be cut off above the knee to prevent bone cancer from spreading, her answer was an emphatic, 'no'.
It was the seven-year-old's determination that finally convinced her.
"I had decided that I want to live". This is Prince's matter-of-fact response when asked how he dealt with such a life changing decision.
A look outside Prince's window gives you a sense of where this confidence comes from. It comes in large measure thanks to the atmosphere created by the St Jude India ChildCare Centres (SJICC) in Wadala in Mumbai. Prince and his family have been staying here for eight months after they shifted base for his treatment.
The first SJICC was founded in Mumbai in 2006 by Nihal and Shyama Kaviratne. Since then it has expanded to many major cities across India. The children who stay here are from economically backward families living in far off towns and villages. Most of them come to the Tata Memorial Hospital in Mumbai for treatment, with no means of accommodation or transport worked out.
The SJICC offers them all this and more, like nutritional support, counselling and education, to name just a few.
They have no idea what the disease is about, what to expect, the costs and the duration, and this is compounded by an amputation. It takes a lot for them to accept it. This is especially the case with a girl child. The main question they have is, 'who will marry her'. One has to give them a lot of support and show them positive examples. - Usha Banerji, CEO, St Jude India ChildCare Centres
Body image is a major concern for all families, even more so for girls. Banerji talks about an instance when a family from Delhi refused to let their daughter undergo an amputation. They were worried that being disabled would mar her marriage prospects. "We connected them to another family with a similar experience to make them understand that amputation would save her life."
To ensure that the child, as well as the family, is well prepared for the changes that follow the procedure, SJICC works closely with doctors. There are several counselling sessions held before and after the surgery, so they are aware of what lies ahead.
"At the occupational therapy centre, the children are taught how to balance and walk with the prosthesis", says Vandana Mehra, Counsellor, SJICC. "Then they go to a center in Haji Ali, where they are taught further on how to walk using the prosthesis."
Nonetheless, it is not an easy transition. "The first prosthesis is not a comfortable one", says Banerji. "There is a lot of pain and it takes some getting used to. To make it easier, we put them in touch with other children who have undergone amputations". It is at times like these that the children fall back into the cushion of support and security at the centre.
That sense of security and the strong connections endure, even years after they leave and move on with their lives.
Nazia Syed, now 23, was the first child to step into the Mumbai SJICC centre in 2006. She had bone cancer and her parents had come from West Bengal for treatment.
Her leg had to be amputated above the knee and after four chemotherapy treatments, she recovered fully.
The warmth, care and hospitality play an important role in recovery. Whenever we came back to Mumbai for follow-ups, St. Jude welcomed us with open arms. I am well now and free to pursue my studies. - Nazia Syed, Cancer survivor
SJICC also helped Nazia out with a sophisticated artificial limb, which has enabled her to lead an independent life. Today, she is studying medical physiology in New Delhi.
She may have physically moved on, but the legacy of St Jude is for life. As Banerji puts it, "Once a St Jude's child, always a St Jude's child. For us they are our children."