For all parents to whom we break the news that their kid has a Congenital Heart Disease (CHD) it sounds like the worst that they could ever hear about their kid’s health. That comes with a reason as after all, critical CHD if not picked up early and treated in time can lead to death or permanent disability for kids. No wonder it’s a dreadful disease in general. What I would like to explain here is that there’s reasons keep up hope, let’s see how.
Eight out of 1000 newly born babies have CHD. The good news is that of these, the majority are defects which do not need any treatment or can be completely corrected with simple procedures or operations. Meaning the majority is non-critical congenital heart disease.
What’s even more reassuring is knowing that medical science has advanced quite a bit over the last three-four decades. Parallel advances have happened is the science dealing with kids’ hearts. So today even the complicated/critical types of congenital heart diseases have a tried and tested treatment option. In most of the situations, it is curative, in some other situations it might be palliative. Even with palliation, most patients can lead a near normal life. The array of treatments that can be done without actually opening the chest includes closing holes and unwanted blood vessels, opening valves and blocked blood vessels, to even placing new valves. Today, these treatments are available in a good number of centers in India.
The cost factor related to treatment is another source of worry to families of kids with congenital heart disease. Indeed, Pediatric cardiac care is one of the most resource intense medical specialties. It takes time and effort by a dedicated team of cardiologists, surgeons, anesthetists, Intensivists, nurses, Perfusionists, other technologists all with focused Pediatric cardiac training and experience to deliver excellent care to these sick kids. There’s nothing as depressing to a doctor than to hear from a family that they are discontinuing treatment of their critically ill kid for want of money. It’s as huge a relief to treating doctors like me as it is to the families to know that most of the state governments are offering free treatment for all patients with congenital heart disease. What’s even more heart warming is that there are Non-Governmental Organizations also out there, more than happy to extend a helping hand to families needing financial assistance such as Genesis Foundation who continuously serve their mission to Save Little Hearts.
There’s another important fact that parents need to be aware about. Medical science has advanced so much that they help us diagnose a large number of babies with congenital heart defects early enough and offer timely treatment. Timing is most important in deciding treatment for congenital heart disease. If not operated timely, kids can be permanently debilitated, with a low life expectancy too. At the same time, operations too early can be as risky and dangerous as too late operations. Parents need to realise that they have the freedom to discuss treatment options and timing in detail with the treating team.
More and more tests come hand in hand with advancement in technology. Like fetal echocardiography helps diagnose heart disease even before the baby is born. Also, when technology is used more and more, we are also “diagnosing” more and more defects which in fact are innocent bystanders of the normal development of a baby s heart. An epitome of this is the diagnosis of an Atrial Septal Defect (ASD) and a Patent Ductus Arteriosus (PDA) in a new born baby. These two “holes” in the new born are part of our normal development and will disappear with time. Also, if a small ASD / small VSD / small PDA has been diagnosed in infancy or early years, more often than not, they don’t cause any trouble to kids’ hearts. And these are invariably the most common diagnoses in a Pediatric Cardiology Clinic. Many families find it hard to believe that a small hole in the heart can be left alone, and kids can live normal lives with it. We need to bust this myth. We need to realise that some “congenital heart defects” in fact do not make the heart so “defective”.
As a society, we ought to move some steps further in order to help these kids with congenital heart disease live normal lives. In spite of the fact that we are at the gateway of the third decade of 21st century, there’s indeed some social stigma still prevailing, associated with CHD. Let’s also spread this positive word - word that cure is here and there’s no space for stigma. This needs to reach one and all and not just families fighting congenital heart disease. That can make our society accept these kids with CHD and help them live more meaningful lives in the way Genesis Foundation does by financially supporting surgeries for little ones whose parents do not have the means. They Save Little Hearts, by working closely with the associated hospitals and families. It is about ensuring these lives resume normalcy not just from a physical capacity point of view but also from a social, emotional and psychological point of view.