Why the fight against paediatric heart disease starts before birth

Every heartbeat tells a story, but for thousands of infants in India, that story is being interrupted before it truly begins. Despite the strengthening of screening programmes, nearly one-fifth of children with Congenital Heart Disease (CHD) remain invisible to the healthcare system until it is nearly too late. This delay in diagnosis is usually due to to a lack of screening or clinical awareness, and transforms treatable conditions into life-threatening hurdles. Early detection is crucial, as being able to treat CHD on time can help avoid life-long disabilities and give children a chance at a fully healthy life.

How the heart develops

The journey to a healthy heart does start at birth; it begins before life starts in the womb. At the 18 to 20 week anomaly scan, doctors can identify up to 85% of major cardiac anomalies. If identified at this stage, expecting mothers can then undergo a foetal echocardiogram, providing healthcare providers with the time necessary to plan for medical interventions if any required, immediately after birth, and giving parents a period in which to prepare mentally.

Prevention also plays a critical role in heart health. This can begin long before a mother enters the delivery room. While only about 4% of heart defects are strictly hereditary, the environment of the developing foetus plays a significant role in determining the health of the heart. Women planning a pregnancy are strongly advised to begin a regimen of folic acid and multivitamins at least six months before conception. This ensures that levels of Vitamin A, D, and folic acid are adequate during the most sensitive stages of heart development. Furthermore, women who are on long-term medication must consult their doctors to be able to switch to alternatives, if needed, in order to ensure the foetus is shielded from avoidable chemical stressors and no harm is caused to it.

Red flags for parents

Once the baby is born, the first three months are a critical window for observation of the heart. Parents and caregivers must be vigilant for subtle signs of distress that are often mistaken for common ailments. A key indicator is the “suck-rest-suck” cycle, where an infant is unable to feed continuously because they lack the energy or oxygen to breathe and swallow simultaneously. Other red flags include excessive sweating during feeding, a bluish tint to the lips or skin known as cyanosis, and a general failure to thrive. When a three-month-old presents with severe, or frequent pneumonia, the cause could often be an underlying heart defect rather than the usual respiratory infection.

The heart’s electrical system

Beyond the physical structure of the heart, there is the often-overlooked electrical system. Roughly one-quarter of children with heart issues suffer from rhythm problems, such as an extremely slow heartbeat or a racing heart that the child may describe as chest pain. These electrical “short circuits” can change a child’s personality, making them timid or prone to what are misdiagnosed as panic attacks. With electrophysiology, doctors can now correct these issues through specialised procedures from as early as age five, often eliminating the need for long-term medication and its associated side effects.

As these children grow, the challenge becomes the transition from paediatric to adult care. In India, many patients who were operated on as children or diagnosed late in adolescence fall into a care gap, which has now led to the emergence of G.U.C.H. (Grown-Up Congenital Heart) disease as a specialised field. Whether it is a young woman discovering a heart defect during the stress of her first pregnancy or a young man finding he cannot keep up with his peers at the gym, the need for lifelong surveillance is crucial. Cardiologists need extensive training and experience to evaluate and manage these GUCH cases.

Closing the gaps

Ultimately, the goal of modern paediatric cardiology is to move toward a more structured and mandatory screening system. Implementing universal pulse oximetry for every newborn can catch defects that the naked eye might miss. When a heart condition is detected and managed within the first year of life, with a success rate of more than 90 , the overall quality of life (QoL) improves by more than 70% across all domains of QoL indicators. By shifting the focus toward early antenatal screening and specialised paediatric care, we can ensure that children with heart defects do not just survive, but grow to lead completely normal, active lives.

(Dr. Atul Surendra Prabhu is senior consultant paediatric cardiologist and electrophysiologist, Narayana Hrudayalaya, Bengaluru. atuldr@hotmail.com)