A story of survival of the youngest of three kids from a family, which lost two elder children within a span of one year to Wilson’s disease, a condition, detected only when their second child was dying………………..
While meeting Aarti a tall young college going girl, living in Mumbai, I came to know that her two elder siblings died due to jaundice. Elder siblings i.e. her sister and a brother both succumbed to jaundice when they reached the age of seven and eight respectively. Condition remained undiagnosed till their second child became critical that the family approached the specialists through close friends. In very critical condition, child was admitted to B.J. Wadia hospital and could not survive for more than one day, but a critical diagnosis of the condition was ascertained by that time, which was Wilson’s disease. Death of their two elder children within a span of one year, completely changed the life of family, who were living a normal life with apparently three healthy children.
The second child was initially diagnosed as a case of viral hepatitis and was admitted at the Kasturba hospital of Infectious diseases for about a month. His condition deteriorated, family took discharge from hospital and later on admitted him to KEM hospital, from where he was shifted to IPCU, B.J. Wadia hospital, where he died of hepatic coma.
Doctors played an important role by guiding and counseling, the grieving family to undergo further screening tests. Immediately following this, Aarti the only surviving child, at the age of three and a half years was diagnosed with Wilson’s disease, after Liver biopsy and other investigations. Coming from the family of modest means, it took most of the resources of family to support the treatment of this child. Continuous motivation, emotional as well as occasional financial support from the doctors helped the family to take care of the child.
Aarti’s mother, “I was determined to make sure that my third child survives. Even when she got slight unwell, I used to visit Dr. Aabha Nagral’s clinic, give her medicines in the clinic itself, wait till she showed improvement , and then only I would bring her back home.” Tears fill her eyes when she recalls how her children died in absence of proper diagnosis, and then she thanks her doctors who stood by the family to make sure that her daughter gets proper treatment and care. Aarti's mother Maya had undergone tubal ligation as a means of family planning after Aarti was born. After the death of 2 kids, she wanted to have another child, but wiser sense prevailed and the family was convinced to look after the only living child (Aarti) well rather than bear more children.
Today Aarti is as normal in physical growth as other kids of her age; in fact she is on the taller side, much more in height than her mother. She actively engages in conversation about her college and daily life and her health. She feels physically weak sometimes, although her disease condition is controlled.
This journey was made possible, for the family by timely support and proper guidance. Both the parents are keen to see their daughter have a perfectly normal future life.
