Ten-month-old little Azharul should have been toddling around the house by now, but instead, he lies on a hospital bed. Since birth, he has been suffering from beta-thalassemia major. With a cannula in his hand and his life tethered to a blood bag, his childhood is confined to Room 204 of Dhaka Shishu (Children's) Hospital and Institute — the very centre of his survival.
For the past seven months, this has been the routine of Azharul, the only son of Fatema and Nurul Amin.
On a recent Tuesday afternoon, Room 204 of the hospital reveals a waiting family — Azharul’s parents sitting beside him, waiting for the blood transfusion to finish. It had already been two and a half hours.
Speaking to them, we learn that Azharul was born in August last year, after their two daughters. Although no issues were apparent at birth, he began to fall ill around three months of age, suffering from constant fevers and crying frequently.
One night, his condition worsened, his body turned pale, and he had to be rushed to the hospital. After a series of blood tests, Azharul was diagnosed with thalassemia. Blood tests for both Fatema and Nurul confirmed that they are carriers of the condition.
Fatema Begum says: “Since that October, we have been getting his blood tested every month, and at the end of each month, we come to Dhaka Shishu Hospital for a transfusion. I came with my son from Noakhali on Monday morning for the blood transfusion, but couldn’t manage blood that day. Finally, I got both a bed and blood around 11am today.
“We’ve been sitting here for three hours, but because his body is so weak, the transfusion process is slow. Half the bag will be administered today, and the rest tomorrow. But now I’m worried about where we’ll stay tonight. The hospital closes at 4pm. I was just discussing this with his father.”
Nurul Amin, sitting beside her, adds: “We were so happy to have a son after our two daughters. But then Allah gave him this terrible illness. It pains me so much to see him suffer. And the financial stress never ends. As the month draws to a close, the anxiety begins. I run a small shop in Noakhali town — there’s barely enough income. After our son fell ill, we have to come to Dhaka every month, buy blood, arrange donors if there’s no supply, and purchase medicines. Add to that food and lodging for three people, and we spend about Tk10,000 to 15,000 each trip. But how much can a small shop earn? We also have two daughters with their own expenses. I don’t know how long we’ll be able to continue his treatment. I see no way forward.”
60–70 children diagnosed with thalassemia at the hospital every day
The story of the Amin family mirrors the reality of countless other families affected by thalassemia. On the bed next to Azharul’s, Ima Akter has been waiting for over five and a half hours with her 10-year-old son Iman.
She shares: “Both my children — son and daughter — have thalassemia major. We come here from the 20 Mile area of Savar, spending six days at the hospital twice a month. Sometimes, we have to come three to five times a month. I’ve come with my son this week, and I’ll return with my daughter next week.”
Lying next to his mother and playing games on her phone, madrasa student Iman says: “I have to lie down for a long time. The needle (cannula) in my hand really hurts. I don’t like it anymore. I can’t even play — if I play too much, I get sick. Even when I come back from madrasa, Amma doesn’t let me go outside. I want to get well soon and play football in the field with everyone. I don’t want to come to the hospital anymore.”
According to the Dhaka Shishu Hospital Thalassemia Centre, an average of 200 to 250 children are tested for thalassemia daily. Of them, around 60 to 70 are diagnosed with the disease. Every year, the hospital identifies 1,600 to 1,700 new thalassemia patients.
Meanwhile, data from the Bangladesh Thalassemia Foundation shows that 6,000 to 7,000 children are born with thalassemia annually. The number of patients is steadily increasing. Over the past seven years, the number of cases has more than tripled.
The foundation reports that in 2018, there were 2,725 patients. That rose to 3,098 in 2019, 3,416 in 2020, 4,941 in 2021, 6,055 in 2022, 7,022 in 2023, and 7,511 in 2024.
According to the Bangladesh Bureau of Statistics (BBS), 11.4% of people in Bangladesh are thalassemia carriers. In comparison, the carrier rate was only 7-8% in 2014–15.
Monthly cost for a thalassemia patient: Tk8,000–25,000
Five-year-old Jonaki, another child receiving treatment at the Dhaka Shishu Hospital’s Thalassemia Centre, requires Tk10,000 to 15,000 per month for blood and iron chelation medicine. Fearing the financial burden, Jonaki’s father abandoned her and her mother, Jhuma Akter, when she was just three years old. Even Jhuma’s current husband refuses to bear the expense. “I’ve spent everything I had in the past four and a half years for my daughter’s treatment,” Jhuma says. “Her father divorced me to avoid this responsibility. I remarried four months ago, but my new husband also won’t support her. Now my brothers help me, but I don’t know how long I can continue like this.”
According to the hospital, there are currently 60,000 to 70,000 thalassemia patients in the country. Each patient requires Tk8,000 to 25,000 monthly for treatment — a figure that remains consistent across age groups, though it can vary depending on the type of thalassemia.
Dr Md Belayet Hossain, head of the Hematology and Cancer Department at Dhaka Shishu Hospital and Institute, told Dhaka Tribune: “Thalassemia doesn’t just destroy one life — it slowly destroys an entire family, especially those from middle- or low-income backgrounds. Treatment doesn’t stop at blood transfusions; regular transfusions cause dangerous iron buildup in the body, affecting vital organs like the brain, heart, lungs, and liver. That’s why patients need expensive iron-chelating medicine every month to keep iron levels in check. The monthly cost for a patient ranges from Tk8,000 to 25,000 — an amount most parents can’t afford. Inadequate treatment can deform the child’s face, enlarge the spleen and liver, and lead to premature death.”
He added: “These families often become socially isolated because many people in our country wrongly believe that thalassemia is contagious. Awareness is critical. People need to know what thalassemia is, why it occurs, and who is most at risk.”
What is thalassemia, and who is most at risk?
Thalassemia is a genetic blood disorder. Humans have two genes responsible for producing blood. A defect in one gene makes a person a carrier; defects in both genes — typically passed from both parents — result in thalassemia. However, not all carriers develop the disease. Studies show that if both parents carry the gene, there is a 25% chance their child will be born with thalassemia. The disease is usually diagnosed between two months and two years of age.
Symptoms include paleness, weakness, frequent infections, slow weight gain, jaundice, irritability, and facial deformities. The child must receive regular blood transfusions to survive.
Though there are many types of thalassemia, the most common in Bangladesh are Beta Thalassemia Major and Hb E-Beta Thalassemia — the latter being more prevalent. Accordingly, the two main carrier types in the country are:
- Beta Thalassemia Trait
- Hb E Trait
Research at Dhaka Shishu Hospital shows that 4.1% of the population carries the Beta Thalassemia Trait and 6.1% carries the Hb E Trait. Each year, around 1,040 children are born with Beta Thalassemia Major, and 6,443 with Hb E-Beta Thalassemia.
Dr Belayet Hossain added that children are most at risk when both parents are carriers. The chances are higher in third or later pregnancies. Children with Beta Thalassemia Major are less likely to survive. When one parent carries the Beta trait and the other the Hb E trait, the child is likely to develop Hb E-Beta Thalassemia.
Thalassemia is preventable, even if not curable
Though thalassemia is not curable, it is preventable.
Dr Belayet Hossain told Dhaka Tribune: “Before marriage, everyone should check whether they or their prospective spouse are thalassemia carriers. Blood testing at the time of marriage registration should be made mandatory. Special tests like hemoglobin electrophoresis or HPLC can detect carriers and patients.”
He stressed that if two carriers avoid marrying each other, the disease can be prevented, as seen in countries like Cyprus, Italy, and Greece, which have almost eliminated thalassemia.
He added: “In Bangladesh, preventing thalassemia will require a concerted effort from the government, the health ministry, and related agencies. There should be regular awareness campaigns in schools, garment factories, industrial areas, offices, and courts. Blood testing must be made mandatory in educational institutions and during marriage registration. Government support is essential.”
Dr Hossain noted that since 1998, Dhaka Shishu Hospital has registered around 5,000 to 6,000 thalassemia patients. “We are trying to provide adequate treatment, but we face many limitations. With government support, we could overcome these. Although delayed, the health ministry, with help from WHO and Unicef, has finally started integrating thalassemia care into the broader non-communicable disease framework.”
