Born into burden: The rising cost of Thalassaemia in Bangladesh

A quiet crisis often begins with celebration. In many Bangladeshi homes, the arrival of a child is welcomed with prayers, sweets, and endless dreams for the future. Yet for some families, that joy slowly turns into fear when an invisible illness begins to reveal itself.

Shaila and Rahim were no different. Their families celebrated when they learned they were expecting their first child. Every medical visit brought reassurance, and nothing seemed unusual throughout the pregnancy. When their daughter Ayesha was born, she appeared perfectly healthy. Her smile brightened the home and filled the family with hope.

But within months, worry quietly entered their lives. Ayesha looked pale, became tired easily, and was less playful than other children her age. Doctors advised further blood tests, and the results shattered the family’s happiness. Their daughter had thalassaemia, a lifelong condition that would require regular blood transfusions and constant care.

Like many parents, Shaila and Rahim had never heard of the disease before. They could not understand how two healthy parents could have a child with such a serious illness. Doctors later explained that parents may unknowingly carry the gene without showing any symptoms themselves. When both parents are carriers, there is a chance their child may be born with the condition.

Health experts say this painful story is repeated in countless households across Bangladesh every year. According to specialists working in the field for decades, many parents only discover the disease after their child becomes seriously unwell. By then, families often face emotional heartbreak, financial strain, and years of hospital visits.

What makes the situation even more tragic is that thalassaemia can often be prevented. A simple blood test before marriage or during early pregnancy can identify whether someone is a carrier. Special tests during pregnancy can also help families make informed decisions early on. However, such services re-main limited in Bangladesh, with advanced testing available in only a few centres in Dhaka.

Doctors and researchers say awareness remains one of the country’s biggest challenges. Many families avoid discussing the illness openly because of fear, stigma, or lack of understanding. Yet silence does little to protect future generations.

For one senior physician who has worked with thalassaemia patients since 2000, the memories remain deeply personal. He recalls the shocked faces of parents struggling to accept the diagnosis and remem-bers many children who later lost their lives. Those experiences inspired him to establish specialised testing facilities despite enormous financial barriers.

Experts now believe Bangladesh urgently needs a stronger national prevention programme focused on public awareness, carrier screening, and wider access to testing services. They say thousands of children could be spared years of suffering through early action and education.

The story of Ayesha is not simply one family’s tragedy. It is also a reminder that awareness, honesty, and timely testing can protect countless children from a preventable future.

For families across the country, the greatest hope now lies not only in treatment, but in knowledge shared before another joyful beginning turns into heartbreak.

The writer is the former President of Dhaka Shishu Hospital Thalassaemia Centre.

E-mail: waqarkind@gmail.com