In the first of its kind procedure in Pakistan, doctors at the Aga Khan University Hospital (AKUH) successfully implanted a heart rhythm monitoring device – an implantable cardioverter-defibrillator (ICD) – in a 14-year-old girl from Balochistan.
A press release issued by the AKU Public Affairs Department on Tuesday claimed that it was the first-ever experiment conducted by the AKUH experts to install the device in a child.
Naila Bugti was born with Long QT Syndrome (LQTS), a rare hereditary disorder of the heart’s electrical activity which causes irregular heartbeats leading to fainting, seizures or even cardiac arrests
Talking with Pakistan Today over the telephone, Naila’s father Rafiq Bugti said the AKUH management charged the Rs 1.1 million for installing the device and saving his daughter’s life.
A small battery-powered pacemaker with additional features, an ICD is placed in patients at risk of sudden cardiac death due to irregular heartbeats. It monitors and identifies abnormal heart rhythms before restoring the normal rhythm of the heart.
The last paragraph of the AKU statement, however, stated: “AKUH Karachi is a not-for-profit, 577-bed teaching hospital committed to providing the best possible options for the diagnosis of disease and the team management of patient care.”
A lawyer by profession, Rafiq is a native of Dera Bugti – hometown of slain Baloch leader Nawab Akbar Bugti. He was forced to leave his town and migrate to Quetta along with his family when paramilitary forces started an operation in the area.
Naila’s three older sisters were not so lucky as they were also born with the same problem and died due to the disorder.
When Naila was diagnosed with LQTS, Rafiq started running from post to pillar to save his daughter’s life. Finally, he somehow managed to reach the AKUH, Karachi, as he had heard a lot about the hospital.
To his surprise, the “not-for-profit” organisation estimated an expenditure of around Rs 1 million for Naila’s treatment. “We have been displaced from our hometown since 2005 and it was huge an amount for me. But I did not want to see another funeral of my daughter, so I started running to different places to arrange the money,” Rafiq said.
Naila’s mother is a religious teacher in Balochistan. She approached the provincial government for help and at last the chief minister agreed to bear the expenditures of her daughter’s treatment.
Despite the assurance by the Balochistan government, the AKUH management bluntly refused to start Naila’s treatment before receiving the amount.
“We requested the provincial government to arrange the funds beforehand and we are really grateful that the Balochistan chief minister sent the complete amount to the AKUH management,” she said.
Even after charging the huge amount, the AKUH Public Affairs Department issued a press release for ‘not losing any opportunity’.
Despite several attempts, Pakistan Today could not contact any official of the AKUH Public Affairs Department, as its head Dhunmai Cawasjee prefers not to talk with the media persons herself and deputes someone else from her department to face the journalists.
An AKUH officer, on condition of anonymity, confirmed that the said amount was charged but “it was the actual price of the device in the market.”
The lead cardiologist of the case, Dr Aamir Hameed Khan, told Pakistan Today that the girl had recovered well after the procedure and the ICD is functioning optimally.
“Since Naila was a high-risk patient, we decided to implant the smallest ICD possible,” he said. “Although ICD placement in adults is not new in Pakistan, this is the first time this device has been implanted in such a young patient,” he added.
Carrying a price tag of Rs 1.1 million, AKUH’s unique pacemaker saves a life
