KARACHI: Pakistan’s surviving conjoined twin Hira Anwar, after she made a splash in the world press in the wake of her successful surgery in the Hospital for Sick Children in Toronto in 1995, is back in our pages. The public interest in conjoined twins created by the death of the Iranian sisters, Ladan and Laleh, revived interest in Hira’s case.

A visit to Surjani Town in the low-income area of New Karachi enabled me to witness one of the modern wonders of medical science. That is Hira, who was born to Fatima and Anwar Jamal in 1992. As one of the triplets, Hira (a craniopagus) was joined with her sister Nida at the head and lived in this unnatural state for over two years until Canadian doctors separated them in January 1995. Nida died a month after the surgery. Experts say that only two per cent of conjoined twins are joined at the head and the rate of survival of craniopagus undergoing separation surgery is very low.

Hira has grown up to be a shy and charming child of 11, seemingly normal in every way. She is thin for her age but is taller than the other surviving triplet, Faryal. Bright and friendly, she greeted me with a warm handshake as she told me about her school, her studies (she will now be starting grade four) and her hobbies. She has come a long way since I saw her last in March 1995 in the cheerful ambience of Toronto’s paediatric hospital, said to be the biggest of its kind in North America.

In 1996, Hira had to make another trip to Canada. This time it was for follow-up reconstructive surgery on her skull and scalp. Until then Hira had been wearing a protective helmet. Skin transplants were carried out by a plastic surgeon. The hospital then sent her home giving her a clean bill of health.

Today, Hira leads a normal life though she has to cope with some of the trauma of the original surgery, which had lasted 17 hours and had involved a team of 23 medical specialists. Her left arm and leg have been left somewhat weakened. The doctors were of the opinion that she would soon outgrow this weakness in her limbs as she gained in strength and weight. Last year, her mother took her for several sessions of acupuncture to a local doctor at Nagan Chowrangi which she says was helping, but the high cost, Rs 100 per session, caused her to discontinue the treatment. Such is the price the poor have to pay for their poverty in this country – expensive health care and malnutrition, apart from unemployment which is Jamal’s lot at the moment.

Hira has only one kidney, as one of her organs was transplanted into Nida (who was born without kidneys) before the separation surgery. Her mother has been advised to observe the normal guidelines urologists prescribe to prevent kidney stones and infections.

Hira was too young when they were separated to remember Nida. But she loves to hear all the stories about her birth and how she and Nida lived together for over two years, and about her epoch-making journey to Toronto where they were received with open arms by the South Asian community and the medical staff of the HSC.

The family — there are two other siblings — recalls gratefully how a report in this paper breaking the news of the twins’ plight way back in 1994 changed their life. Anwar Jamal had been at the end of his tether then. Subsequently, the turning point arrived when the government came forward to help and many others in Canada took up their cause. But above all Anwar Jamal, the devoted father who had visited Hira and Nida day after day for two years at the National Institute of Child Health, has words of praise for the staff of the NICH who looked after the twins in their conjoined state with selfless devotion — taking care of them, playing with them and comforting them when they were in distress.

Today the parents dote over Hira — though they say they try not to spoil her. Nida, the one who could not make it, lives on in their memory and in the enlarged photograph Fatima has put up in her modest sitting room. — Zubeida Mustafa

DR Arif Bawany is right when in his letter he says that our press failed to remember our own conjoined twins, Hira and Nida, while reporting the case of the Iranian sisters, Ladan and Laleh (July 15). But he has got many of his facts wrong. This is just to put the record straight because Dawn was the paper which first reported the case of Hira and Nida when they were two years old and had been in the National Institute of Child Health, Karachi, since they were brought there soon after their birth in October 1992. Prime Minister Benazir Bhutto read the Dawn report and directed the government to pay for the twins’ treatment.

It was the Hospital for Sick Children in Toronto (and not Montreal as stated by Dr Bawany) which offered to take up the case. The surgery was performed in January and Nida died a month later. But Hira recovered and returned home to Karachi a few months later. We followed her case in Toronto where I visited her in the hospital, interviewed the neurosurgeon Dr Harold Hoffman and met her parents and the third triplet, Faryal. Our reporter managed to trace Hira a year later in Karachi where she was under the care of doctors at the AKUH. But subsequently we lost track of her as we were told that her father, Anwar Jamal, had migrated from the country.

It would be interesting to know if Hira is alive — she would be eleven if she is. When I last met her she needed to wear a helmet because of the opening in her skull for which reconstructive surgery was to be done a few years later.

A follow-up on Hira would be instructive. Many people were professionally, emotionally and financially involved in that case. Beginning with the nurses at the NICH in Karachi who looked after the infants for two years, to Dr Harold Hoffman and his team at the HSC in Toronto, the South Asian community in Canada which raised a sum of 263,000 Canadian dollars and the Pakistan government which paid 135,541 Canadian dollars for the treatment, the case evoked considerable public interest.

ZUBEIDA MUSTAFA

Source: DAWN Thursday, July 17, 2003