New lease on life for two Vietnamese children following allogeneic bone marrow transplants

In mid-October, a family from Da Nang was filled with joy as their eight-year-old son, Pham Le Hoang Vuong, was discharged from hospital in good health after undergoing a stem cell transplant. Just two weeks after the procedure, Vuong, with his bald head and an innocent smile, was already running around energetically.

The family eagerly anticipates his complete recovery and return to school.

Vuong's father, Pham Van Hao, expressed his relief: "It feels like we’ve won the lottery. My son won’t need monthly hospital trips anymore."

"I’m happy to be better and grateful to the doctors," said Vuong, touching his head as he looked forward to his hair growing back.

Vuong is one of two children with thalassemia who received allogeneic bone marrow transplants at Hue Central Hospital in early October.

This marked the first such procedure conducted in the Central Highlands region. Hue Central Hospital is now the third hospital in Vietnam, following the National Institute of Hematology and Blood Transfusion and the National Children’s Hospital, to offer these transplants for children with thalassemia.

Allogeneic bone marrow transplantation involves the transfusion of hematopoietic stem cells from a compatible donor—either a blood relative or an unrelated donor—into the patient. This differs from autologous stem cell transplantation, where the patient’s own stem cells are harvested and later reintroduced into the body.

Pham Le Hoang Vuong during treatment at Hue Central Hospital. Photo provided by Hue Central Hospital

A lifeline for families in crisis

Vuong, the youngest of three children, comes from a family struggling with economic hardship. His 61-year-old father is unable to work due to illness, while his 50-year-old mother works in a factory.

At two years old, Vuong developed a fever, and subsequent tests revealed severe anemia, leading to a diagnosis of myelodysplasia, a group of hemoglobin disorders. His treatment involved regular blood transfusions and iron chelation therapy to manage iron overload.

For nearly six years, Vuong’s parents traveled over 100 kilometers once or twice a month to the hospital, where transfusions lasted four to six hours per session. "He frequently developed jaundice or fever, requiring immediate hospitalization," Vuong’s mother recalled, describing the family's constant struggle to cover the costs of treatment.

Initially, Vuong was traumatized by the blood transfusions, fearing the sight of needles. However, as he grew older, he learned to endure the routine with resilience.

"He is very strong-willed and still smiles even when in pain," his mother said.

Despite the illness affecting his growth and energy levels, Vuong remained determined to keep up with his studies and successfully progressed through each grade.

A second chance for Thien

Tran Viet Thien, four years old, was the second child to receive an allogeneic stem cell transplant. Thien was diagnosed with thalassemia at nearly two years old after experiencing a high fever. He began undergoing monthly blood transfusions and iron chelation therapy at the Da Nang Maternity and Pediatrics Hospital.

Tran Viet Thien during treatment at Hue Central Hospital. Photo provided by Hue Central Hospital

"It seems like fate determined that my child’s early years would be spent in the hospital," Thien’s mother, Pham Thi Thuy, said. With limited financial resources, the family survived on a modest income, yet remained dedicated to securing treatment for their son.

Doctors advised that a stem cell transplant was the only permanent solution for these children, as prolonged reliance on blood transfusions could lead to complications like iron overload, potentially resulting in heart failure or cirrhosis.

The cost of a stem cell transplant, estimated at around VND500 million (US$19,750), along with the expenses of staying in a sterile isolation room—uncovered by health insurance—posed a significant financial burden on both families.

However, Vuong and Thien were fortunate to receive financial support through "The Sun of Hope" program, organized by Hope Foundation and VnExpress, which partially covered the expenses for their transplants. Thanks to this support, both children underwent successful procedures at Hue Central Hospital.

"We now look forward to the day when our child fully recovers and can return to school," Vuong’s father shared, expressing hope for the future.

Two pediatric patients at the discharge ceremony after successful stem cell transplants, Oct. 7, 2024. Photo provided by Hue Central Hospital

Thalassemia places a heavy economic burden on affected families, with treatment costs averaging VND3 billion per patient from birth to 30 years old.

In Vietnam, over 12 million people are estimated to be carriers of the thalassemia gene, many of whom are unaware due to the lack of obvious symptoms. Nationwide, the treatment of all thalassemia patients requires more than VND2,000 billion annually, along with 500,000 units of safe blood for transfusions.

Prevention of thalassemia is crucial. If a family member is diagnosed, it is vital that all siblings undergo screening. Marriages between gene carriers should be avoided, or if such unions occur, prenatal diagnosis is essential. When both parents are carriers, the chances of a child inheriting the disease are 50%, with 25% facing severe symptoms that necessitate lifelong treatment.

Thalassemia is a broader societal issue with significant economic and generational consequences. The most effective measure remains prevention through screening, especially during premarital and pre-pregnancy stages.