After countless hospital visits, treatments and consultations for their ailing son, Karachi residents Feroz and Shabnum Soobashah thought their prayers were answered when they came across Dr Arvinder Soin’s profile on the internet.
Little did they know that they would be stuck in a “vicious commercial cycle where patients are treated like customers by doctors who only play with the family’s emotions and bleed them dry,” as Feroz put it.
Their son Muhammad Umar, who had been suffering from a liver disease since birth, breathed his last on November 28, 2015, in India.
He died, at the age of 21, following a liver transplant that was supposed to give him a chance at a new life. He was operated on by Dr Soin of Medanta – The Medicity Hospital in Gurgaon India. Now, with a great void left in their lives, the grieving parents hope to create awareness to help people in similar situations.
“I spent 21 years caring for Umar. Today, I feel empty without him. My house is empty, his room is empty and my heart is empty. This emptiness has coaxed me to create awareness for those patients who are suffering from liver disease and considering a transplant in India,” Umar’s father Feroz Soobashah said.
Umar was born in Karachi at the Aga Khan University Hospital, where the doctors failed to understand what was wrong with the newborn. They advised his parents to take him to London, where the 9-month-old boy was diagnosed with a liver disease by Professor Morvet of Kings College Hospital. His condition was controlled by medicines “throughout his short but meaningful life”.
“Umar struggled with his academics but never gave up. We always encouraged him to look at the end result, no matter how tough the journey was. Umar reached Grade 12 through hard work and dedication. Children his age were already well into their programmes at colleges and universities,” his family said.
When he reached the age of 21, doctors advised it was finally time for Umar to undergo a liver transplant. The bilirubin could not be controlled by medicines anymore, they said.
When asked why they opted for Dr Soin, his father said, “We came across his profile on the internet. He claimed to have done over 1,000 transplants but their success was not mentioned. We chose India for its affordability but the experience was nothing less than a torturous journey.”
Feroz and Shabnum claim that Dr Soin conducted the surgery within 15 days of their arriving without any screenings or tests. Once the operation was done, the surgeon came to visit Umar only twice a month.
“It seemed to me that they just wanted to put my son on the operation table as soon as possible,” Feroz said.
According to Umar’s parents, post-surgery liver transplant patients need to have fluid drained from their bodies. Umar received only one drainage pipe which was not operating properly but the staff failed to notice this for two whole days. When they put another one, it came off by accident. Doctors claimed that the ultrasound did not show any fluid in the stomach but two and a half days later when the infectious fluid had spread, they inserted a third pipe. But by then, it was already too late.
Dr Soin was contacted via email; however, he is yet to reply.
Even the amenities at the hospital were far from satisfactory. As the ICU was short of beds, Umar had to share a room with other patients when he should have been quarantined to prevent the risk of contracting infections, his parents said.
As for the cost of the surgery, they were never informed of the additional costs and a breakup of the package was not given upon repeated requests. “Three other Pakistani families who were with us in Gurgaon for medical attention described the same experience.”
Later, a pediatric doctor raised the point that a genetic test should have been conducted before the surgery as Umar might have carried the disease in his genes since birth. But the doctors were not sure if that was the case and what the particular treatment would have been in that case. Feroz and Shabnum believe that if Dr Soin had carried out such tests, then their son would be alive today.
The grieving parents advise against choosing Medanta. “Do not get attracted by the initial packages as the cost is probably the same that you would give in Thailand. They use the price as a hook and request more money when you are in the most vulnerable situation. Do not look at the number of transplants either; rather, look at their success rate.”
His parents will always remember Umar as a “normal boy, who loved food, was very caring and friendly, and having hurt anyone’s feelings”.
“’What ifs’ do not matter. What matters is that our story can be an eye opener for those struggling with health care systems locally and around the world. What matters is that you read and share our story so that another Umar is not lost,” his father said.
