Why does the battle against heart disease in children begin before birth?

Every heartbeat tells a story, but for thousands of babies in India, that story is interrupted before it really begins. Despite enhanced screening programs, approximately one-fifth of children with congenital heart disease (CHD) remain invisible to the health care system until it is almost too late. This delay in diagnosis is usually due to a lack of screening or clinical awareness, and turns treatable conditions into life-threatening obstacles. Early detection is crucial, as being able to treat coronary heart disease in time can help avoid lifelong disabilities and give children a chance at a full, healthy life.

How does the heart develop?

The journey to a healthy heart begins at birth; It begins before life begins in the womb. During an anomaly scan at 18 to 20 weeks, doctors can identify up to 85% of major heart anomalies. If identified at this stage, expectant mothers can then undergo a fetal echocardiogram, providing healthcare providers with time to plan medical interventions if necessary, immediately after birth, and giving parents a period to prepare mentally.

Prevention also plays a crucial role in heart health. This can start long before the mother enters the delivery room. While only about 4% of heart defects are completely hereditary, the environment of the developing fetus plays an important role in determining heart health. Women who are planning to become pregnant are strongly advised to start a folic acid and multivitamin regimen at least six months before becoming pregnant. This ensures that vitamin A, D, and folic acid levels are adequate during the most sensitive stages of heart development. Furthermore, women who take long-term medications should consult their doctors so that they can switch to alternatives, if necessary, to ensure that the fetus is protected from avoidable chemical stressors and does not cause any harm.

Red flags for parents

Once the baby is born, the first three months are an important window for heart monitoring. Parents and caregivers should be alert for subtle signs of distress that are often mistaken for common illnesses. The main indicator is the “suck, rest, suck” cycle, where the infant is unable to feed continuously because he or she lacks the energy or oxygen needed to breathe and swallow simultaneously. Other red flags include excessive sweating during feeding, a bluish color of the lips or skin known as cyanosis, and a general failure to thrive. When a three-month-old baby develops severe or recurrent pneumonia, the cause may often be an underlying heart defect rather than the usual respiratory infection.

The electrical system of the heart

Beyond the physical structure of the heart, there is the electrical system that is often overlooked. Nearly a quarter of children with heart problems have heart rhythm problems, such as a very slow or rapid heartbeat that the child may describe as chest pain. These “short circuits” can change a child’s personality, making him shy or prone to what are misdiagnosed as panic attacks. Using electrophysiology, doctors can now correct these problems with specialized procedures from the age of five, often eliminating the need for long-term medication and associated side effects.

As these children grow, the challenge becomes the transition from pediatric to adult care. In India, many patients who underwent surgery as children or were diagnosed late in adolescence fall into the care gap, with the result that GUCH (adult-onset congenital heart disease) has now emerged as a niche area. Whether it’s a young woman who discovers a heart defect during the stresses of her first pregnancy or a young man who finds he can’t keep up with his peers at the gym, the need for lifelong monitoring is crucial. Cardiologists need extensive training and experience to evaluate and manage these GUCH conditions.

Closing the gaps

Ultimately, the goal of modern pediatric cardiology is to move toward a more regulated and prescriptive screening system. Applying a comprehensive pulse oximeter to every newborn can detect abnormalities that may not be seen by the naked eye. When a heart condition is detected and managed within the first year of life, with a success rate of over 90, overall quality of life (QoL) improves by more than 70% across all domains of QoL indicators. By shifting the focus towards early prenatal screening and specialized care for children, we can ensure that children with heart defects not only survive, but grow up to live completely normal, active lives.

(Dr. Atul Surendra Prabhu is Senior Consultant Pediatric Cardiologist and Electrophysiologist, Narayana Hrudayalaya, Bengaluru. atuldr@hotmail.com)