Jasmine (name changed), a nine year girl, as any other child of her age was busy watching cartoon show on TV. Her physical growth appeared normal, good in studies.
“She scored 90% in her exams this time”, says her mother affectionately.
The journey was very tough, where parents were constantly living under the fear of destiny of their child, questions arising time and again on the child’s survival. Even a doctor telling them that nothing could be done and leave it all to the God. Jasmine’s mother recalls various instances where she saw her child in pain because of disease as well as procedures, but kept her will power strong, full family supporting each other in decision making, taking crucial decisions on treatment after consulting experts. Jasmine’s mother was always there whenever she was allowed to be with her child, holding her hand during the procedures.
Jasmine was born on September 2003, younger of the two siblings, in a family residing at central Mumbai. Her mother said that the problem became obvious at one and half years of age, when Jasmine could not stand properly, hers legs and head shook and she could only speak few words. Pediatricians were consulted and it was taken as a case of delayed growth, which would eventually be normal later on. By June 2005 her abdomen showed distension and treated for gas for a week. Condition persisted and USG showed ascites (collection of fluid in abdomen) for which treatment was given. She was admitted to Nair hospital where tapping of the fluid and further investigations were undertaken, and as diagnosis was not clear, she was put on anti tuberculosis medicines. Distension became worse after few days and she was admitted to Hinduja Hospital, where again, further investigations and tapping was done. Biopsy showed nodular regenerative hyperplasia. MRI showed absent flow in all hepatic veins except for the middle vein. Diagnosed as nodular regenerative hyperplasia with portal hypertension with massive ascites with oesophageal varices, her treatment was continued at Lilavati Hospital under renowed doctors and surgeons but no results
After a full year, i.e., in May 2006, Dr. Ashish Bawadekar, a renowed specialist at KEM hospital (Pune) for the first time suspected that the child may be a case of Budd Chiari Syndrome, which is a rare disorder almost one in one lakh people. Parents continued the previous treatment as they wanted to be very sure before going ahead with treatment at different hospital.
“The time in my child’s life changed and bad phase was over, as soon as she was under the care of doctors from Jaslok hospital” says her mother.
In August-2006 finally a diagnosis of Budd Chiari syndrome was confirmed, doppler showed middle and left hepatic veins obliteration with collateral right hepatic vein patent. Very next day, a stent was placed in the patent vessel. Surgery was a success. Post dilatation of vessel, the ascites did not occur again, and growth of the child increased.
All doubts regarding her child’s mental abilities and lack of physical growth started vanishing when after one month of surgery Jasmine’s growth gained pace and after few months her growth was normal as like other kids of her age.
Jasmine is under treatment, and followed up regularly, by her doctors. Predictions about future are not clear, still there are questions about the prognosis on long term. Family is living the present together caring for the child and having faith in life.
Jasmine's father, "My daughter's life commenced from the day she was operated at Jaslok. With the help of funds from various renowed Trusts, as well as, blessings of God & wellwishers, made it possible to take this treatment as all my savings were exhausted."
Compassion and care shown by Dr. Shaji, Dr. Aabha and Dr. Fazal is valued most Jasmine's family.
"The moment we met them and saw Dr. Fazal doing tapping with gentleness, we put our full trust in the team of doctors", Jasmine's mother mentions.