Doctors of the Hematology and Nephrology Department ( Thanh Hoa Children's Hospital) visit and examine a patient with congenital hemolytic anemia.
Present at the clinical hematology unit of the Hematology - Blood Transfusion Center (Provincial General Hospital), we were led by doctors and nurses to visit the patients with hematology - blood transfusion. They were all thin, pale, and had deformed faces. At the end of the room, a girl about 10 years old lay obediently receiving a blood transfusion, without a single cry. Her name is Pham Thi Phuong Linh from Trung Ha commune. For the past 5 years, every 1-2 months, she and her mother have gone to the hospital for a blood transfusion.
Ms. Ha Thi Hien, Linh's mother, shared: "When I received the news that my child had TMBS, I was very sad. My two younger brothers and I also have this disease. The life of people with TMBS is very difficult. They are often tired, cannot play or live like normal people, and always have to go to the hospital for blood transfusions, living on other people's blood."
According to Ms. Hien, each treatment for her child costs about 3 - 4 million VND. Although it is very difficult, she always tries to earn enough money, or borrow money so that Linh can receive treatment on schedule. There are times when she cannot afford enough money, she has to accept being 10 - 15 days later than the doctor's appointment.
In the same situation, every month, Ms. Le Thi Kieu and her four children in Tan Phong commune go to the hospital for blood transfusions. Ms. Kieu has 5 children, but 3 of them have TMBS. The second child was born in 2011, had jaundice, pale skin, and frequent fever. When she was 5 months old, her family took her to the hospital for examination and found out that she had TMBS, so they regularly took her for treatment. In 2022, she gave birth to twin girls, both of whom had quite severe TMBS.
Ms. Le Thi Kieu shared: “Every month, I take my three children to the hospital for treatment. The oldest child is often tired and misses school, so he cannot keep up with his friends. The family is in a difficult situation because only my husband works, I have to stay home to take care of the children and take them to the hospital for treatment. It is so hard, but when I go to the hospital for treatment, I only worry about not having enough blood to transfuse to my children. Every time I am short of blood, I have to ask for blood from volunteer groups and blood donation clubs everywhere.”
Most TMBS patients have to go through such pain and hardship. The fatigue and physical pain follow them for the rest of their lives. Most children with TMBS have to take long days off from school to receive treatment, their studies are not maintained, many children do not finish middle school or high school. Adults cannot work due to poor health.
Assessing the disease TMBS, Dr. CKII Nguyen Thi Thuy Hanh, Head of the Department of Hematology and Nephrology, Thanh Hoa Children's Hospital said: "TMBS is a genetic disease. Patients often have pale skin, yellow skin and eyes, and slow physical and mental development. Complications of the disease increase over time such as osteoporosis, skull deformities, thin face, prominent forehead, flat nose, delayed puberty, enlarged spleen and liver, which can affect life, forcing patients to limit strenuous exercise and avoid impacts that affect the body and health."
“Blood transfusion and treatment for TMBS only treat symptoms and maintain the patient’s life, but cannot completely cure the disease. However, TMBS can be detected early through prenatal screening to detect the disease gene during the pre-marital and pre-pregnancy stages,” Dr. Nguyen Thi Thuy Hanh added.
Through practical research, many couples after giving birth to their first child with TMBS were advised by doctors to undergo prenatal screening, pregnancy, artificial insemination and pre-embryo transfer diagnosis. Many young couples were also advised to undergo prenatal screening. However, due to the high cost of this basic screening, many couples in difficult circumstances, especially in mountainous areas, do not undergo prenatal screening. Therefore, many TMBS children are still born and families have many children with TMBS.
According to statistics, at the Department of Hematology and Kidney of Thanh Hoa Children's Hospital, there are about 430 - 450 patients with TMBS being treated; at the Center for Hematology and Blood Transfusion, there are about 1,500 patients each year. According to doctors, each patient needs 1 - 4 units of blood for treatment each time. These are not small numbers. With such a number of patients being treated for TMBS, the amount of blood needed for treatment is very large.
To gradually eliminate the disease, it is necessary to promote propaganda to raise people's awareness of the importance of prenatal screening and newborn screening; to include information about thalassemia in the curriculum for students. At the same time, it is necessary to strengthen propaganda and mobilize people to participate in voluntary blood donation; to promote propaganda to reduce early marriage and consanguineous marriage, especially in ethnic minority and mountainous areas.
Article and photos: Quynh Chi
Source: https://baothanhhoa.vn/noi-dau-mang-ten-tan-mau-bam-sinh-255137.htm
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