Hanoi (VNA) - If both husband and wife carry Thalassemia gene, they should get consultations from doctors on how to give birth to healthy children without carrying the gene before their conception.
For five days, Quach Gia Bao, 6, from Tan Uyen district, the northern mountainous province of Lai Chau, has taken blood transfusion every day from 8 or 9:00 am to 5:00pm.
Next to Bao’s bed is Ha Minh Khoi who takes the same schedule. Sometimes they sit together to read cartoon stories from the library of the Thalassemia Centre under the Institute of Hematology and Blood Transfusion.
In the rest patient rooms at the centre, all the little patients have a needle sticking on their hands for fluid transfusion, which prevents them from playing. They patiently sit or lay on their beds for about 10 hours to get rid of iron from their body.
They have get acquaintance to the hospital where they stay after returning home for 20-25 days.
Feelings of a mother of a Thalassemia child:
One third of the time in hospital
Taking care of her son at the Institute of Hematology and Blood Transfusion, Nguyen Thi Luyen from Tan Uyen district of Lai Chau said that six years of her son’s life are six years they visit the hospital.
Giving birth to a healthy son, but two months later, Gia Bao showed symptoms like yellow and pale skin. Initially, she and her husband thought that he needed more sunlight. However, the symptoms became more serious. Then she took him to the hospital for testing, with the result of Thalassemia positive.
Receiving the result, they were shocked. Since then, they have stayed in the hospital 10 days every month.
Nguyen Ngoc Luyen reads books for her son.(Photo: VientamPlus)
“When he is tired, he looks like a withered flower, refusing to eat, drink or play but sitting on bed and breathing. Entering the hospital, getting blood transfusion and discharging iron, he becomes more active. I only hope that he is healthier to go to school with his friends and take care of himself when he grows up. But for now, he has to spend one third of his time in the hospital,” said Luyen.
She said that both she and her husband carry Thalassemia genes but they did not know that until their son was diagnosed with the disease. If she took early interference measures before getting conceived, things might be different.
Tran Thi Hoa, grandmother of Ha Minh Khoi from Ly Nhan district of Ha Nam province, said that her son gives birth to three children. The first one is healthy, but Khoi often get sick and has yellow skin from he was one. Too worried, they took him to the hospital where he was diagnosed with Thalassemia. So far, Khoi has taken treatment for five years.
“After listening to doctors’ explanations, we have understood the disease. Khoi’s mother has recently given birth to a healthy child because she got consultations before giving birth,” said Hoa.
Doctor Vu Hai Toan, Deputy Director of the Thalassemia Centre, said that some families have two or three children suffering the disease due to a lack of knowledge.
Tran Thi Hoa and her grandson Ha Minh Khoi(Photo: VietnamPlus)
Particularly, a family from Thai ethnic minority group in Bac Yen district of Son La province has four people carrying the disease.
Luong Thi Thuy and three children of her older brother are under treatment. She said that they could not afford the treatment until the cost is covered by health insurance. They have taken treatment since 2015.
It is crucial to take pre-marriage tests
Doctor Toan said that 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.
The centre is taking care of 3,500 patients, he said, adding that the number has risen through years.
More than 12 million Vietnamese citizens are carrying the thalassemia gene, and about 20,000 people have contracted the disease and need treatment. Each year, about 8,000 children are born with Thalassemia, 2,000 of whom are seriously affected.
Experts from the institute said basic treatment methods are blood transfusion and iron excretion.
Thalassemia is a form of anaemia, a genetic blood disease a child can inherit from one or both of his/her parents carrying the mutant gene; the risk is higher if both parents have it.
Without early detection, couples who both carry the gene will have 25 percent of giving birth to children with the Thalassemia gene. There is 50 percent probability that their children will be infected.
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 2 trillion VND (85.1 million USD) and 500,000 blood units are needed each year to treat Thalassemia patients in Vietnam. The average treatment expense for a severe patient from birth to the age of 30 is about 3 billion VND (130,000 USD).
Doctor Toan said that Thalassemia can be prevented by low-cost testing before marriage and pregnancy.
Doctor Vu Hai Toan, Deputy Director of the Thalassemia Centre (Photo: VietnamPlus) Currently, there are many methods to help couples with Thalasemia gene to give birth to healthy children such as pre-birth screening and vitro fertilization.
Doctor Toan advises all couples to take blood tests before marriage, which can be conducted in all district and provincial hospitals at a cost of only some hundreds of thousands of VND. In case both husband and wife carry Thalassemia gene, they will get consultations from doctors on how to give birth to healthy children without carrying the gene before their conception.
If parents find their children show symptoms such as sickness, pale and yellow skin, they should take them to the hospital for testing as soon as possible, he added./.
| The National Thalassemia Programme is expected to help control the disease as well as the spreading of Thalassemia gene sources, minimizing the number of children born with the disease and enhance the living quality for Vietnamese population. In reality, many countries have carried out such programmes, including Italy, Malaysia, Singapore, and Thailand. The number of children born with the disease has been decreasing dramatically. Thalassemia must be included in the list of four diseases that need screening before marriage and become a compulsory test for pregnant women. Health insurance has covered all testing costs. The measures will contribute to raising public awareness of preventing the disease nationwide. |
