NADYA is a frail, frightened 15-year-old whose eyes brim
over with tears every few minutes. Unlike most girls her age, a new
brightly coloured dress doesn’t make her smile. The only thing she asks
is if she will ever get better.
This delicate girl has a
congenital cardiac condition known as Tetralogy of Fallot which
requires total heart repair surgery. Since childhood she would
frequently faint while playing and go blue in the face and breathless.
In their two-room rented house located in a muddy, overcrowded lane in
Shikarpur city, Nadya’s parents are a picture of exhaustion and worry.
Muhabbat
Ali, probably in his sixties, is shaky and hunched over from years of
struggling to care for his family from the meagre earnings of a barber.
The mother is pensive but forces a weak smile when the need arises.
Their three eldest sons have also been trained as barbers and the men
spend the day working at a shop in the city.
The family
left their village of Chodhyo Sadayo in Shikarpur district in search of
work and have spent years living on rent, their personal possessions
limited to a few worn-out charpais, a rusty cupboard and a few clothes.
The eldest daughter is wheelchair-bound having been afflicted with polio
in both legs and one arm when she was six months old. Another daughter
sits by Nadya’s bed stroking her forehead and reciting prayers for her
sister’s health.
Children across Sindh are victims of congenital heart disease.
Muhabbat has spent his fatherhood going back and forth from
the hospital. He lost his fourth daughter at the age of 18 to the same
condition Nadya has. He took that child from one hospital to another,
took loans worth thousands of rupees to pay for medication and travelled
to Karachi several times for treatment but gave up when the National
Institute of Cardiovascular Diseases asked for Rs100,000 for surgery.
Two years ago, the young girl lost her struggle at a small hospital in
Sukkur.
This father, already paranoid and nervous,
became even more wary of life. In the absence of family, social or state
support, he spends every waking moment bound in fear. The woes of three
daughters have eaten away at his heart. Nadya herself remembers little
from her childhood other than visits to the hospital surrounded by her
parents and brothers. Still, she refused to give up on schooling and
despite missing exams due to illness, she would read and write at home.
She’s made her way to class 9 and says if life gives her a chance, she
wants to become a heart doctor.
Nadya’s father, although
worn out, aged and sick, didn’t give up on his daughter. Nearly every
day, he would tuck her thick medical file under his arm and head out
into the scorching heat in search of help. He would plead with doctors,
borrow money from wherever he could and travel to hospitals in big
cities, navigating his way through the ruthless and cumbersome
healthcare system. He would talk about his daughter with everyone he
met; acquaintances, customers at the barber shop and fellow travellers.
And he would follow every lead he got, no matter how remote. He heaped
upon his heart every rejection, every blank stare from across a hospital
counter, every disappointment.
His solitary struggle
paid off. Eventually, a milk shop worker mentioned a non-government
organisation that helps children afflicted by heart disease. Muhabbat
picked up the trail, got back on public wagons and travelled in search
of help. His daughter was successfully operated at Aga Khan University
Hospital in Karachi and is now recuperating back home in Shikarpur.
Children
across Sindh are victims of congenital heart disease and not all of
them are as fortunate. Marriages among blood relations contribute to the
high incidence, and other factors such as genetics and infections
during pregnancy are also responsible, according to Dr Mehnaz Atiq,
pediatric cardiologist at Aga Khan University Hospital. Most cases,
however, are ‘chance’, she says. The state-run NICVD also handles these
patients but surgery is not inexpensive there either.
After
a childhood of suffering, Nadya, whose parents are not related to each
other, got lucky; but her good fortune was her father’s relentless
spirit. Every parent does what they can; braving government hospitals,
being looted by fraudulent faith-healers and burying themselves in debt.
More often than not though, families in remote villages and
shantytowns, never even get an accurate diagnosis let alone an avenue
for treatment.
The government of Sindh must attend to
this urgent problem. To start with, dispensaries can conduct awareness
campaigns so that families are equipped to recognise the symptoms in
their children on time. Then, taluka and district level hospitals should
develop an easy referral mechanism whereby these children are sent
directly to facilities where surgery is available. And, of course, any
efforts to make such operations low-cost and more widely available would
be a major contribution.
The writer is a journalist and founder of the Ali Hasan Mangi Memorial Trust.
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