By Zubeida Mustafa
A few months ago, there was no light at the end of the tunnel for Anwar Jamal. Today, he and his wife Fatima are at peace with themselves and grateful for that.
As the parents of triplets, two of whom were born joined at the head, for two years the Jamals had to live with this aberration. Their life was being affected and they could not figure out a solution to their problem.
When I met them in their apartment in the MacDonald House close to the Hospital for Sick Children (HJSC) in Toronto in April, they had lost one of the conjoined twins, Nida, six weeks ago. But there were hopes for Hira, the surviving sister, who had lived for 27 months joined to Nida until they were separated after a 17-hour operation on January 23.
Little did I realise that the twins from Pakistan had made media headlines in Canada. A visit to the world-famous hospital which had accepted them with open arms and an update from Dr. Harold Hoffman, the neurosurgeon under whose care they had been, gave me a better perspective of the case. Here was a human interest story, but it was not one of sensationalism and drama of which the western media is equally capable. The twins’ story was one of human compassion and spirited fund-raising by men, women and children 10,000 miles away from home. More importantly, it was a story of professional commitment and achievement by members of the world of science and medicine in which the western societies take so much pride.
As Fatima dressed up little Faryal, the third sister who was born with Hira and Nida, and Anwar made tea for us, the couple recounted to me the family’s tribulations and moments of hope and despair since October 1992 when the triplets were born in a Nazimabad clinic in Karachi. Hira and Nida were what in medical terminology is called craniopagus conjoined twins. The father rushed them to the National Institute of Child Health (NICH) where they were not expected to live for more than a day or two. But they defied all prognosis and survived the trauma of their birth and congenital abnormality. Thus began a story of a father’s devotion and struggle to give his daughters a decent life. He resisted suggestions from wellwishers to let the infants, starve to death. For two years, he visited the hospital everyday to see the girls, deliver milk and baby food for them, launder their clothes and provide all their basic needs. The NICH, like all other health facilities in the public sector in Pakistan, lacked the resources to care for the twins on a long-term basis. But the Jamals knew they could not take the twins home in their unnatural state. “We could never have looked after them. Our house does not even have a concrete roof. They could never have survived had we taken them home where I already had three children to care for,” Fatima said.
The nurses at the NICH doted on the twins, played with them, cherished them and taught them songs and nursery rhymes. But the hospital lacked the facility and the expertise to separate them. Even an MRI entailed repeated visits to the Liaquat National Hospital in a taxi, by no means a painless journey for the infants. In the process, Anwar Jamal chalked up a debt of Rs 80,000, which he still has to repay.
The story was first reported by .Dawn and Prime Minister Benazir Bhutto responded by directing the government to pay for the twins’ treatment abroad. (It ultimately paid 135,541 Canadian dollars, to be accurate, though not without the traditional tardiness of our bureaucracy and the Foreign Office’s intriguing silence to repeated queries from its consulate in Toronto). Next came the Hospital for Sick Children’s positive and prompt response to the request from NICH if the twins could be treated there. (The doctors waived their fees). Finally, there was a massive display of humanitarian spirit by the South Asian community in Toronto, which welcomed the Jamal family in its midst and stood by it in its hour of crisis. PIA provided free tickets for the twins and their parents (but not the accompanying triplet — by some strange logic).
“When I boarded the plane in Karachi on November 5,” Anwar Jamal recalled, “I just had Rs 500 in my pocket and had no inkling where I was headed for. Since that is how things work in Pakistan, I took the plunge as I was so desperate.” In Toronto, the family was received at the airport by Dr Shahida Khan, a Pakistani-Canadian paediatrician at the Hospital for Sick Children, who played a key role in helping the Jamals to find their bearings in a strange new world of which they knew nothing. She provided them some money for their initial expense, arranged their immediate transfer to the hospital from the airport, mobilised the fund-raising and acted as the interpreter to facilitate communication between Anwar Jamal and the health professionals looking after the twins. Anwar is now fluent in English.
The response of the South Asian Muslim community in Canada was heart-warming, not just in monetary terms. It readily identified itself with the Jamal family whose concern for the twins’ welfare became its own concern. The day the surgery took place, hundreds of people joined the Jamals in a vigil, praying for the success of the operation. When Nida died a month later, the community turned out in large numbers to console the grieving parents and bury the infant. They raised 263,000 dollars for meeting the cost of the twins’ hospital care and more is still coming in.
For the Hospital of Sick Children, the Hira-Nida case provided a rare opportunity for its surgeons and doctors to apply their professional skill and open new vistas for research. The hospital, which has a reputation for extending its services to young patients with serious illnesses from abroad, had separated three sets of conjoined twins before. But as Dr Hoffman said, none had been joined at the head. He accepted the challenge, the heavy odds against success, notwithstanding. In the last hundred years for which records are available, only 35 craniopagus conjoined twins separations have been attempted. Both twins have died in many cases, while in a third both have survived but with some neurological problems in one, and in the rest one has survived.
“Had we not attempted the separation, both babies would have died shortly. We had to advance the date of the operation because Hira’s heart had started to give way. Moreover, I was hopeful about saving both the children,” Dr Hoffman told me.
“It was only after the twins had arrived at the hospital and investigations had been made that we discovered that there were more complications than we had expected. Nida’s kidneys were not functioning at all and her sister’s organs were under tremendous strain as they were producing urine for both. Hira’s heart was also enlarged as it was pumping blood for both the children. The positive finding was that the twins essentially had two separate brains but their dura maters had a small bridge between- them. The blood vessels travelling from one sister to the other posed a challenge, as they had to be disconnected carefully,” Dr Hoffman informed me. Describing the case as a rare anomaly that occurs in only one in two million births, Dr. Hoffman commended the team effort, which made the separation procedure possible. Urologists, neurosurgeons, cardiologists, radiologists and plastic surgeons — nearly 12 of them — were involved. A month before the separation surgery, one of Hira’s kidneys was transplanted in Nida. The saggital sinus which the twins shared and the artery from Hira to Nida were disconnected to minimise the blood loss during the surgery. Tissue expanders were implanted in their scalps to promote the growth of skin to cover the wound caused by the surgery. The operation was a success and enabled the twins to have a separate existence for the first time in 27 months. The risk of their dying on the operation table of massive blood loss had been great. But Nida, the weaker of the two, could not make it and died a month later of cardiac arrest. Hira has recovered well. Initially she would feel above her head as she searched for her twin sister. Now she has adjusted to her separate identity. Her post-operative care has focused not just on healing her wounds caused by the operation. Plastic surgery is taking care of that. She has been receiving nutrition through a tube in her nose round the clock to help her gain strength and weight. She has received intensive therapy to help her learn to do things which come naturally to toddlers of her age — sitting, standing, walking, eating, drinking. Above all, she had to be separated from her conjoined twin sister, Dr Hoffman informed me. That was the price the Jamals had to pay so that Hira could live.
A bigger challenge lies ahead for them when they return home to their older two children in a few weeks. The cultural shock will be intense, for the transition from the comfort of McDonald House to the difficult living conditions of New Karachi will not be easy. To ease the process, Hira who was released from the hospital on April 26 was not sent home right away. She is living with her family in an apartment in Toronto, where they have been instructed to treat her as naturally and normally -as they can. For instance, she is to eat Pakistani meals so that doctors can monitor her adjustment to what life will be like in Karachi when she returns here.
The Jamals will also miss the community support they received away from home. This is not always forthcoming in a society which is impoverished, strife-torn and struggling to keep itself together. But most important of all, will Hira’s entry into the world of normal living be uneventful? She would need medical supervision and monitoring for some time. From Toronto’s Hospital for Sick Children where she had become the darling of all and sundry she will arrive in Karachi — it is still not known under whose care. One hopes that the medical community in Pakistan will rise to the challenge so that Anwar JamaPs ‘jewel’ can lead a normal life and Canada’s medical fraternity does not feel let down.
Source: Dawn 19-05-1995