The journey to survival of children with congenital hemolytic anemia
Lying on the hospital bed because of his weak and small body, child patient Ha Phuong (character name has been changed, Lam Dong province) tried not to cry after the nurse inserted a needle to find a vein for an infusion. blood .
Ms. Nguyen Phuong Ly, mother of patient Phuong, said that the family had a completely healthy first-born baby boy, but when baby Phuong was born, he was underweight. Therefore, during the early stages of care, the baby's health condition was often sick and when he went to the local doctor, the doctor only diagnosed him with malnutrition and slow development compared to his age.
However, when she was 3 years old, Phuong often felt nauseous and dizzy, so her family took her to a local hospital. Through clinical examination and testing, the doctor suspected that Phuong had congenital hemolytic disease, also known as Thalassemia, so he quickly transferred the patient to Children's Hospital 2, Ho Chi Minh City for treatment. Currently, about every 3 months, Phuong returns to the hospital for blood transfusions and follow-up examinations.
To maintain life and depending on each patient's condition, the time to return to the hospital varies. There are children who have to stay in the hospital continuously for treatment.
Not far away, on the hospital bed, little Hoang Quan (character's name has been changed, 5 years old, Long An province) is also tired of fighting the disease. According to the family, the couple had been married for 6 years when they started having baby Hoang Quan, but due to not understanding about Thalassemia, the pregnancy and birth were normal.
It wasn't until the child was 18 months old that he started showing signs of Thalassemia, so he took him to the hospital for examination. His parents also did tests to find out that the couple both carried this gene.
"Illness is something no one wants. When I learned that my child had to live with this disease for the rest of his life, I felt very sad. I only knew how to try every day with my child," patient Hoang Quan's parent shared.
Screened early, the chance of giving birth to healthy children is high
BS.CK2 Nguyen Dinh Van - Head of Hematology Oncology Department, Children's Hospital 2 in Ho Chi Minh City said that children with congenital hemolytic anemia (hemolytic anemia) are currently the most common genetic disease in Vietnam and have Another name is Thalassemia, usually manifests from under 1 year of age if the disease is severe, moderate and mild forms can appear later.
A smaller group of diseases is immune hemolytic anemia, which is an acquired disease that usually occurs a few weeks after viral infection, and often manifests in patients with no previous history of anemia. The disease often progresses to cause anemia quickly within 1 week and most children go to the hospital because of anemia or dark urine.
Signs to recognize that a child has Thalassemia is usually that the family will see the child pale and slow to gain weight after 6 months of age, or if the disease manifests later, it may be discovered by chance when going to the doctor for another reason. Patients often have symptoms of mild fever and paleness that progress rapidly within 1 week. Some children will urinate red or sassafras-colored blood. Children with severe Thalassemia need early detection and regular monitoring. Blood transfusion and iron chelation when indicated. Families need to comply with the hospital's iron chelation regimen.
According to the Institute of Medical Genetics (HCMC), on average, about one person in every 20 people carries the disease gene. Children will be born with Thalassemia when they receive two disease genes from their parents, one gene for each person. Many parents do not know that they carry the disease gene because they belong to the group of healthy carriers (carry only one gene), have no symptoms of the disease, but have the ability to give birth to children with Thalassemia.
When testing blood formula and hemoglobin electrophoresis (hemoglobin electrophoresis), Thalassemia can be detected early. However, for healthy people who carry the gene in a mild form, blood tests sometimes do not detect abnormalities. In that case, gene testing will help diagnose cases of hidden disease genes, not only Thalassemia but also many other diseases. other genetics.
