Congenital Heart Disease- An Ongoing Battle

Ever heard of the term ‘blue baby’ or even ‘hole in the heart’?
And if you’ve wondered what it means, you’re not alone.

These are just some of the terms that refer to either the appearance of a baby with a congenital heart disease, or quite literally the defect itself.

Occurrence of Congenital Heart Disease in India

According to a 2017 study, the prevalence of congenital heart disease (CHD) in Southeast Asia from the year 1990 has decreased by a good 1.1%, and mortality due to the same has decreased by a whopping 40.4%. This is a huge testament to the advancements made in their prevention, identification and treatment, better infrastructure, increased awareness among the general population.

Blue baby refers to the overall bluish and purplish tinge of the skin, called cyanosis when the blood is poorly oxygenated due to a defect in the heart

In the past 20 years, as a country, we’vebecome a force to reckon with, in terms of our rapid growth in technology, economy, education and medicine, especially CHD treatment in India. We’ve grown immensely in our capacity to accurately identify and treat them, with the advancement of technology and medicine. While a number of methods to diagnose, correct and treat congenital heart diseases already exist, they must be adapted to the Indian situation, owing to the fact that we are still classified as a ‘lower middle income’ country, and significant barriers exist to the same.

One of the main aspects with these defects is our ability to identify them as early as possible and intervene immediately, which tremendously improves their longevity and quality of life further on. These ‘defects’ refer to a fault in the structure of the heart.

For easier understanding, think of it like the architecture of a building. Normally a building has a front entry and an emergency back entry. Now imagine, if the front door is cemented shut and you can only enter/exit via the fire exit, it would cause a problem in day-to-day maneuvering around. Similarly, a congenital heart defect affects the normal functioning of the heart.

Management of Congenital Heart Disease

A hole in the heart refers to septal defects like Atrial Septal defect, or Ventricular Septal defect due to an anamoly in the heart

Ideally, if doctors find any symptoms during pre-natal tests, then the mother should be referred for prenatal Echo and after the birth, identified and sent to an early intervention center for further management.

Another early intervention, that is simple and requires no fancy equipment is Pulse oximetry screening. Yes, the same one which has become a common household item since the Covid-19 pandemic hit us all.

The pulse oximeter is a device that measures the percentage of oxygenin the blood, which ultimately tells you the saturation of the child.Based on the oxygen saturation percentage, the clinician can refer the child for further investigation like Echocardiography to identify critical heart defects like Transposition of Great Arteries (TGA) or a more common treatable one like Tetralogy of Fallot (TOF). These are called duct dependent Congenital Heart Defects. Together with prenatal ultrasounds, physical exams and pulse oximetry screenings at birth for every newborn in the country, screening could vastly improve its outcomes.

A pulse oximeter is used to check oxygen saturation

Challenges to CHD Screening

In a country like India, with 28 states and 8 Union Territories, and a varied distribution of resources and infrastructure, multiple challenges arise while implementing this seemingly simple schema of screening.

Given that around 21% of births still occur at homes in rural India and the limited access to technology, the golden screening window of 24 hours right after the child’s birth is missed. Then the Congenital Heart Defectgoes undetected well into adolescence, leaving limited treatment options, and palliative care becomes the mainstay.

Simply educating the familiesand caregivers regarding the importance of the first 24 hours can have really improve the situation. Implementing training programs for the doulas, introducing newborn screening as a national healthcare scheme, with state to state and district level programs screening children for it can go a long way in reducing the national burden.

Most congenital heart diseases, if untreated can lead to various complications arising like – Pulmonary arterial hypertension, neurological complications like brain abscess, poor growth, development and rhythm disorders like atrial flutter and sudden cardiac death.

Fortunately, the availability of treatments for a wide variety of these diseases is increasing in India – for example, Tetralogy of Fallot (TOF) is a highly manageable condition now. Capable and trained doctors are performing complete repair in neonates with Tetralogy of Fallot. Ten years back, this was not possible under CHD Treatment in India. Conditions like Atrial septal defect (ASD), Ventricular septal defect (VSD) and Patent ductus arteriosus (PDA), on a case to case basis are simply managed with percutaneous catheter closure, and other specific measures like Indomethacin for preterm infants with a PDA.

We still don’t have all the answers, but the picture is better than what it used to be and can improve further with adequate awareness on CHD Treatment in India. In the near future, as a nation we should plan to bring down the proportion of consanguineously born babies,so affordable high-quality care can be available to more people.

It’s still an uphill battle, but as the saying goes, Rome was not built in a day.With the advent of social media, widespread access to the internet in India, and increasingliteracy rates, I can onlyhope, to see a bright future ahead with happy, healthy babies and parents who have access to quality medical care in all parts of our country.