Nguyen Lan Anh (not her real name) and her husband had to make a hard choice during her pregnancy: giving birth to the baby or not. 

The couple who both carry the Thalassemia gene soon found out that their baby was infected with the disorder before he was born.

Thalassemia is an inherited blood disorder caused when the body doesn’t make enough haemoglobin – an important part of red blood cells. The disorder results in excessive destruction of red blood cells, which leads to anaemia.

Finally, they made a courageous choice: keeping the baby.

Two years on, once a month, their baby is taken from their hometown in central Đà Nẵng City to Hà Nội for a blood transfusion, which is the only way to treat the disease.

Thalassemia patients have blood shortage and iron accumulation in their body. The people with severe symptoms might suffer from bone problems, liver and heart failures, and the condition can be fatal.

According to the National Institute of Haematology and Blood Transfusion (NIHBT), there are about 8,000 newborns carrying the Thalassemia gene every year. As many as 2,000 suffer from severe symptoms.

Thalassemia is a non-infectious disease but is an inherited one. Children who have parents with the Thalassemia gene will stand a high risk of infection or carrying the gene.

Bạch Quốc Khánh, NIHBT director, said more than 12 million Vietnamese people carry the Thalassemia gene.

Among people undergoing treatment at the NIHT, many are from the same family. Many families have two to three children infected with the disease. The children look smaller than normal ones.

Without early detection, couples who both carry the gene will have 25 per cent of giving birth to children with the Thalassemia gene. There is 50 per cent probability that their children will be infected, doctor Khánh said.

Dr Nguyễn Thị Thu Hà, director of NIHT’s Thalassemia Centre, said the level of Thalassemia infection and number of gene carriers in mountainous areas where ethnic minority groups live are higher than other areas because of inbreeding.

Huge investment in medicine and regular blood transfusion make Thalassemia a costly disease, putting financial burden on families and society as a whole.

It is estimated that VNĐ2 trillion (US$85.1 million) and 500,000 blood units are needed each year to treat Thalassemia patients in Việt Nam. The average treatment expense for a severe patient from birth to the age of 30 years old, is about VNĐ3 billion ($130,000).

Doctor Khánh from the NIHBT said Thalassemia can be prevented by low-cost testing before marriage and pregnancy.

There needs to be a national Thalassemia programme which helps with screening and detection of genes during pre-marriage and pre-pregnancy periods.

Blood tissue testing must be made compulsory for pregnant women during their first pregnancy check-up. Health insurance should cover Thalassemia testing costs, he said.

Pre-marriage and pre-pregnancy blood screening has been conducted in other countries for many years and there are no new Thalassemia infections detected in countries like Cyprus and Italy. That gives hope for Thalassemia doctors and patients in Việt Nam, Khánh said. VNS