Building a 'common home' for children with thalassemia

Babies with thalassemia who are being treated at the Department of Gastroenterology - Clinical Hematology (Nghe An Obstetrics and Pediatrics Hospital) all have common identifying characteristics: yellow, pale, tired, prominent forehead, flat nose, high and small cheekbones, stunted growth... Every month, they have to leave their beloved home to come here for treatment for 10-15 days. To maintain life, they need continuous blood transfusions and iron excretion.

In treatment room 509, NPTT (9 years old, from Nghia Dan district) has become accustomed to having to go to Nghe An Obstetrics and Pediatrics Hospital for treatment every month. The child was diagnosed with the disease when he was only 6 months old. Since then, the Department of Gastroenterology - Clinical Hematology has become his second home. Accompanying NPTT for many months has been his grandfather, who has looked after and cared for him so that his son and daughter-in-law can go to work, earn money to support and treat his illness.

NPTT’s grandfather shared: “The treatment journey for my child was very difficult. Fortunately, here, my child received dedicated care and advice from the doctors and nurses in the department. Nghe An Obstetrics and Pediatrics Hospital also has thoughtful support programs for patients and their families, providing adequate meals and clean hygiene; helping the family to ease some of the difficulties.”

Lying not far from NPTT’s hospital bed is LMC (4 years old, from Que Phong district). LMC was diagnosed and treated for thalassemia when she was 18 months old. LMC’s mother said: “My husband and I got married and had a child without knowing that we both carried the recessive gene for the disease. When we received the test results and learned that our daughter had thalassemia, my husband and I were stunned… Being sick, she always felt tired, lethargic and less developed than children of the same age. She could not study normally because she had to be hospitalized for a long time.

Dr. Nguyen Thi Kieu Oanh (Department of Gastroenterology - Clinical Hematology) said: Thalassemia (congenital hemolytic anemia) is a hereditary anemia. This disease causes the patient to be in a state of chronic anemia for life. Due to anemia, the body reacts by increasing red blood cell production, expanding the area of ​​red blood cell production in the bone marrow, leading to changes in the structure of the skull, face and spongy ends of long bones, in some cases there are hematopoietic tumors (blood production in the marrow, lungs, etc.). This causes the face of patients with congenital hemolytic anemia to be deformed: high forehead, flat nose, high cheekbones, protruding teeth, brittle bones, reduced bone density, osteoporosis.

Patients with congenital hemolytic anemia due to repeated blood transfusions, causing iron overload in the body, can cause cirrhosis, liver failure, heart failure, pituitary and gonadal failure, diabetes, hypothyroidism, hypoparathyroidism...

Currently, at the Department of Gastroenterology - Clinical Hematology, Nghe An Obstetrics and Pediatrics Hospital, two main methods of treating thalassemia are blood transfusion and iron chelation. Depending on the degree of anemia, the interval between blood transfusions of patients is also different. Iron chelation aims to prevent iron overload in patients, prevent iron levels in the body from increasing too high, and reduce complications of iron overload.

Currently, stem cell transplantation is a modern treatment method, but the cost of treatment is very expensive. Stem cell transplantation is indicated for patients with severe congenital hemolytic anemia, under 16 years old, without severe iron overload and with a stem cell donor who is compatible with human leukocyte antigens.

Thalassemia is incurable, patients must be treated for life, but the disease is very easy to prevent. To determine whether they carry the disease gene or not, young people need to do a complete blood cell analysis test before getting married. To have a happy family and each baby born healthy, couples should do a premarital blood screening test.

Thalassemia not only weakens the spirit, reduces the economy, and reduces children's access to culture and education due to the long and costly treatment time, but also affects the quality of the population and reduces the race.

Sharing the difficulties of patients and their families, the Department of Gastroenterology - Clinical Hematology and the Department of Social Work Quality Management (Nghe An Obstetrics and Pediatrics Hospital) have been trying to coordinate with benefactors to give gifts to support and encourage patients and their families. Nghe An Obstetrics and Pediatrics Hospital always hopes to receive more golden hearts to help and support patients./.