December 23, 2004

A 13-year-old girl, disabled by polio, was left at the Aga Khan University Hospital when she was one. Adopted by the hospital, Rumana Husain writes about how the child attends school and copes with her physical and medical problems

There are innumerable qualities of the human mind and spirit that the body cannot always complement. Similarly, a fully functional and healthy body does not necessarily guarantee a satisfied and contented life. It is only when specific body parts do not develop normally, or cease to work, that we realize the true value of all our physical abilities.

Naila Bhatti has turned 13 this year. She has a pretty face and an appealing smile. She is studying in class VII at the CAS School in Karachi. Yet, she is forced to live in the Paediatrics Ward of the Aga Khan University Hospital (AKUH).

Naila was brought to the AKUH by her parents when she was barely a year old. She was suffering from acute paralysis due to polio. After some time, her parents stopped visiting her. Thus abandoned, with nowhere else to go, and unable to survive in the outside world on her own, she was adopted by the hospital. Over the years her pretty face has grown with age, but her body has not. She has a small and shrunken frame, her arms are functional, but her lower limbs are virtually lifeless. Mentally, however, Naila is comparable to any other average child of her age.

She was initially housed at the Intensive Care Unit (ICU), where doctors and nurses looked after her with love and affection. News about this clever, chirpy, very lovable but sick, little abandoned girl spread. She had visitors who brought her presents, who sat with her and read out stories, but eventually they stopped coming. No outside relationships have continued.

When I recently met Naila inside the ward, it is after many years. It’s disconcerting to see her physical handicap once again, but somehow her brightness and optimism have a reassuring effect. The nurse who is attending her also has a cheerful disposition.

When I enter the ward, I see the nurse lifting Naila from the bed and putting her in the custom-made, powered wheelchair on which she usually spends the rest of the evening. Giving the nurse a hand after Naila’s ventilator has been fixed properly and she has been seated comfortably, I bend down and introduce myself. Naila points towards a chair in the distance and wants me to pull it over. We are now facing each other.

I recall the day, almost a decade ago, when I met her for the first time — a child about three-years old. I was then heading the junior section of a private school. A colleague at the school had stumbled upon Naila and her story. While visiting the child I read out a story to her inside the gloomy environment of the ICU. Naila was then confined to the place with a ventilator. She, of course, does not recall those initial years of her fragile existence.

Naila’s birthday is celebrated on September 5, and this year it was special as it also marked her entry into the teens. “Each year, the hospital staff throws a birthday party for me, and my classmates from school also join us,” she informs me.

Initially, a colleague had floated the idea of enrolling Naila with the school, so as to give the child’s life a sense of permanence, continuity and meaning. Two teachers were deputed to visit her at the ICU on a regular basis. They taught her in conjunction with the classes held at the school.

Later, the school’s principal, with the help of a few friends, got Naila a mobile ventilator that enabled her to venture out of the hospital and attend classes on the school’s premises instead of leading a totally secluded life.

Naila would come to school for a little while, three days a week. Subsequently, the confidence at both ends grew and she began attending the school five days a week. She has recently graduated from junior school and now is in class VII.

Kashifa Samad, who now heads the junior section where Naila spent the last four years, says, “We have promoted her each year although she does not perform at the class level. She works at her own pace. Her handwriting is beautiful, almost like calligraphy!” Samad gushes, and then regrets that though her comprehension is good, Naila’s reading skills are quite poor.

“I wish we could have done something more concrete like teaching her to use a computer. We only have one computer downstairs (the child could not be taken to the computer room on the first-floor level), and that was not available to Naila at all times. If she gets hooked onto the computer the world will open to her,” she opines.

I ask Naila if she likes to watch television, she says that apart from watching western music videos, she is not too fond of anything else.

Samad observes that Naila is a brave child, but concedes that although there has always been a nurse at her side who takes care of her physical and medical problems, it hasn’t been easy for the school to deal with Naila’s emotional problems. “There have been occasions when she has been terribly frustrated. Her diminished interest or participation in significant activities, her non-cooperation, tantrums and moodiness have been alarming at times.”

Samad also feels sad that Naila cannot accompany other children on any field trips. The mobile ventilator has to be constantly connected to a power supply or a battery that runs only for a short while. “In fact when there were power breakdowns in the area, and the school did not have a generator either, we had made arrangements with the neighbours to help us out.”

Talking to another person who has taught Naila for two years, it becomes obvious that taking care of a special child is not an easy task. While inclusive education is strongly recommended for disabled children, professional training is a must for teachers dealing with them.

The teacher says, “Although many of the children have been with Naila right from kindergarten, and have become familiar with her problems; her occasional wails and shrieks of discomfort have been traumatic experiences, not only for them but also for all the teachers. None of the school staff was trained to deal professionally with the intense psychological distress that the child goes through at times.”

In order to understand more about her mood disorders, her feeling of detachment, her immobility, etc, Dr Ghaffar Billo was contacted at the hospital. The doctor agreed that Naila’s deformity is likely to pose severe psychological problems in the coming years as well.

Does the hospital have any future plans for Naila? Can she be integrated in some sort of work force? To this he says that a specific plan has not yet been chalked out, as she is still quite young. However, she could probably be trained for some vocational assignment, keeping in mind her physical limitations.

While the hospital bears the entire medical and residence cost of Naila, including her transportation to and from the school, a nursing aid has been hired to accompany her to school every morning. The nurse’s salary is borne by a private donor.

We have thousands of uncared for sick children as well as disabled adults in this country who are left to fend for themselves through beggary. Naila’s unique story is testimony to the institutional as well as individual attention, affection, commitment and benevolence of several persons for a very special child.

“Fortunately,” says Dr Billo, “no one is born with this disease. Polio is a viral infection that is easily preventable by the oral polio vaccine. At one time, in 1994, Pakistan had more than 2,000 cases of the disease. That was 25 per cent of all the cases in the world and 75 per cent of all the cases of polio in the eastern Mediterranean region. Thanks to the National Immunization Days held regularly since 1994, the number of cases of polio have declined to a little over 30 this year.”

I detect an Amazing Facts book lying on Naila’s bed. She is very vocal about her likes and dislikes, and says that her favourite subjects are geography and science. “I have to be interested in science, as I want to be a doctor when I grow up,” she says in a matter-of-fact manner before we bid goodbye.

She scurries off on her wheelchair for a round of the wards, meeting and joking with familiar faces. I am amazed by her energy and impressed by her cheer.

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