Remember little Radha, the elf with brittle bone disease, the one who even appeared on national TV and who twirls like a dervish? The one we love so much and fear for? Well thanks to a kind supporter and friend Radha was examined yesterday by a top orthopedic surgeon and a paediatric surgeon in one of the swankiest hospital of our city.
In the early evening Radha set out with her teacher Shamika and Tiphanie an occupational therapist from France. The little child was frightened and awestruck as she entered the portals of what would have looked to her like a fairy land. She held on to her teacher and did not utter a word. Soon they were in the examining room and the doctors got to work. The child was petrified but did not move or fuss. The examination was soon over and the doctors gave their verdict: Radha would need rodding surgery, a complex series of operations that would straighten her curved bones and perhaps reduce the frequency of her fractures and maybe get her to walk. The decision proclaimed the doctors would be the mother's. We knew it would have to be ours.
Rodding surgery in any osteogenis imperfecta case is not a cure but simply stabilizes the bones and may improve the quality of life of the patient. A perusal of any article on OI shows that what the child needs is to be handled with care. I wonder how that is possible when you live in a hole in a slum! What goes by the name of home is a hornet's nest where even the most basic task is fraught with dangers. It is no wonder that Radha has in her short life had more than 50 fractures! Were she to undergo a series of complex surgeries there is no way she could live in this home. She would need safer moorings.
Do we or don't we. We are faced with an existential question. In her present situation little Radha's leads as normal a life as possible: she eats, sleeps, plays with her siblings, even looks after the younger ones. She comes to pwhy where she learns, dances, plays and even fights with her classmates. She is handled with as much care as possible. Sometimes a false movement or a forgotten object results in a snapped bone, a trip to the government hospital and the ensuing cast, but Radha is a pro at that by now. In the present situation her bones are deteriorating. In the past month she has lost the use of one of her arms as her bones are slowly bending. In the present situation she may lose the use of the other and then become unable to feed herself or even write. Would the operation solve that. Not quite as the doctors are only talking of her leg bones. How many surgeries would one need to rectify all her problems.
Rodding surgery is complex and lengthy. Her post op care would above all need a clean and hygienic environment where she can heal her bones as the risk of infection is huge. Surgery would mean long absence from all that is familiar to little Radha: her home, her family, her school, her friends. It would entail pain and loneliness for yet unknown results. But one thing is sure: she would never be cured.
Do we or don't we. Even with surgery Radha will never have a normal life, the kind a girl from a family like hers can aspire for: a marriage and a family of her own. She may be able to get some education, and learn some skill but in a society like ours where does it get her. She would always need to be handled with care and thus need someone to do so.
Doctors give their opinions without assessing the whole situation. They simply see the ailment and the best medical treatment available. But we have to have the courage and grit to view the situation as a whole and see how best to act. At this moment I am unable to decide what to do. I hope the God of lesser beings will once again guide my steps.
Labels: God of lesser beings