By Sonica Aron
Parenting is a challenging and rewarding task. Parenting is all about raising a child, which is similar to providing nourishment for a tree to grow into a large and fruitful tree. Given today’s lifestyle, use of technology and its impact on physical and mental health of children at an early age, parents are becoming more aware and focusing on their children’s well-being as a priority.
Thalassemia- A Disease
Thalassemia is an inherited blood disorder caused by reduced production of a protein called globin chain, which is required in the proper amount to form normal, stable hemoglobin. Thalassemia causes the body to make fewer healthy red blood cells and less hemoglobin than it needs for regular functions. It is passed from a parent’s genes to their children. The disease is classified as Thalassemia Major or Minor.
Thalassemia Major is found in children who receive mutated genes from their parents. Inherited children will be unable to produce the necessary hemoglobin, which eventually leads to chronic fatigue. People with thalassemia traits in one gene are Thalassemia Minor. According to the Ministry of Health and Family Welfare report, there are nearly 270 million Thalassemia patients worldwide. The report further states that India has the highest number of children with Thalassemia major, approximately 1 to 1.5 lakh and an estimated 10,000 -15,000 children with Thalassemia major are born each year. To survive, those suffering from the disease require a life-long blood transfusion and medication.
Symptom of Thalassemia
Anemia, or lack of oxygen in the bloodstream, causes the signs and symptoms of thalassemia. The severity of symptoms depends on the type and severity of the disorder.
Until about 3–6 months of age, an infant born with transfusion-dependent thalassemia is perfectly normal. In other cases, it may take several years. Pale skin, cranky behavior, slow growth, swelling of the belly, facial bone or skull being wider than usual, dark urine, weakness, and fatigue are some symptoms.
Some babies may show signs and symptoms of thalassemia at birth; others develop them during the first two years of life; some with only one affected hemoglobin gene do not experience thalassemia symptoms.
Factors that increase your risk of thalassemia include:
Family history of thalassemia. Thalassemia is passed from parents to children through mutated hemoglobin genes.
Certain ancestry. Thalassemia occurs most often in African Americans and in people of Mediterranean and Southeast Asian descent.
How is thalassemia diagnosed?
Thalassemia is diagnosed using blood tests, including a complete blood count (CBC) and specific hemoglobin tests.
Moderate and severe thalassemia is usually diagnosed in early childhood within the first two years of life.
Since thalassemia is a trait passed to children through parental genes, family genetic studies can help diagnose the disorder.
Red Blood Cell transfusion
Regular red blood cell transfusions are the baby’s lifeline if he or she is born with the illness. Before transfusion, hemoglobin should be maintained at 9-10.5 gm%. They should have packed red cell transfusions every 3–4 weeks, preferably without white cells, and this frequency may rise as the child grows.
Recurrent red blood cell transfusions disrupt the baby’s body and cause iron overload. This iron accumulates in a variety of organs, including glands, the heart, and the spleen. Iron chelators are drugs that are prescribed in this therapy to eliminate excess iron. Furthermore, for the best results, medications must be taken in precise doses and on a regular basis.
Hematopoietic stem cell transplantation (HSCT), also known as bone marrow transplantation (BMT), is the curative treatment for thalassemia major. For a favorable conclusion, it can be done using a full HLA-matched sibling/family donor or a matched unrelated donor (MUD). Because the best results are obtained in children who are younger than 8–10 years old, this alternative should be investigated from a young age.
Despite the fact that there is no absolute cure for the disease, it can be avoided through carrier screening, genetic counseling, and prenatal diagnosis. As a result, it is true that prevention is better than cure. The initial diagnosis assists families with the disease’s potential repercussions and being prepared until the kid is born. Several government programs to raise awareness of the disease’s prevalence, as well as verified records from hospitals across the country, can help to estimate the burden and adopt preventive actions. Furthermore, non-governmental organizations, community-based organizations, support groups, and public and private businesses could carry on the preventative campaign.
Tips to be aware of
Treatment for thalassemia has improved greatly in recent years. Children diagnosed with mild or moderate thalassemia that follow careful, detailed treatment plans can expect to live a normal quality of life. Those with moderate or severe thalassemia must also closely follow their treatment plans. A healthy lifestyle including frequent follow up visits help children diagnosed with thalassemia be as healthy as possible.
When it comes to a kid’s well-being, parents, it is important for parents to know about such ailments and diseases so that correct diagnoses and treatment can happen at an early stage, helping their children lead a healthy and normal life.
(The author is Founder and Managing Partner, Marching Sheep. Views expressed are personal and do not reflect the official position or policy of FinancialExpress.com.)