Increasing positive treatment outcomes for CHD in children: In conversation with Dr Neeraj Awasthy

Each year Congenital heart disease in children means over 200,000 are born with it. Unfortunately many of these children succumb to these defects, either at birth or during the early years of childhood with no access to timely medical care. Thanks to support from various NGOs and children’s heart Foundation that are fuelled by passionately driven doctors, these children are provided a new life.

Taking this opportunity to discuss the same with Dr Neeraj Awasthy.
Dr Neeraj Awasthy is the Principal Consultant & In-charge of the Paediatric Cardiology department at Max Hospital, Saket. With over 19 years of experience, he has corrected various types of Congenital Heart Defects and has been associated with our children’s heart foundation for over a decade.

Q1: You have been actively working with children with heart defects. Do you get the desired outcome with treatment?

A: As a doctor working with children day in and day out, Paediatric Cardiology is very close to my heart. In the past few years, this field has undergone many phases of change. In the initial phase, the results of the treatments were not so good. Subsequently, with scientific advancement, the results started improving and we could treat most of the cases over a period of time.

But in India, what really hampered our efforts was that these children were small and had young parents. These parents had just started earning and did not have sufficient funds for the surgery required by their children. So, we needed strong NGO (Non-Governmental Organization) support for the patients, and the partnership with Genesis Foundation became a boon.

Q2: You have been an advocate of Genesis Foundation’s cause for a while now. When did you hear about Genesis Foundation for the first time?

A:  I have been associated with Genesis foundation for a long time and it is difficult to pinpoint the exact time when I first heard about them. Genesis Foundation has been a part of me for as long as I can remember. I interacted with the Foundation through some of the patients who were brought in by the Foundation itself for surgical, interventional or evaluations procedures. That is when I came across Mr R Srivatsan who introduced me to Genesis Foundation.

Q3: Do you think both awareness and monetary support are big issues for underprivileged families while opting for CHD treatment?

A: So, there are two aspects to this, firstly the family’s lack of awareness on whether the child is suffering from a heart disease, or they are not acquainted with the organizations providing treatment for Congenital heart disease in children, therefore, lack of awareness is rampant.

Most young parents from underprivileged backgrounds are just starting their careers and do not have the necessary financial capabilities to treat the illness. Lesser awareness also leads to misconceptions around the same; plus heart surgery is extremely costly. Lifelong implications even after the surgery is completed is just one of the various misconceptions that have been floating among the public and these need to be broken to effectively treat the child. These misunderstandings are being tackled, one day at a time with the efforts of the Government of India, hospitals in public and private sector, doctors and NGO’s because most children can resume normal/near-normal life after the required medical intervention.

Q4: How do you deal with superstitions present around infant health, especially since the nature of the topic is so sensitive and emotional?

A: The truth is, not only are there superstitions present in the community but also the low awareness among medical professionals around various state of the art facilities available for the effective treatment of the public. This is why messaging around how infants can be subjected to interventions or surgery can help them survive a lifetime with excellent long-term outcomes and prognosis.

We are increasing awareness through one-to-one counselling and a few promotional videos, writeups etc. Outreach programs are needed to ensure that any infant with CHD can be evaluated, since many kids suffering from the same just need the right guidance, but there is an absence of any kind of intervention or surgery to help them. Timely diagnosis is key in providing better treatment outcomes as complications mostly occur in later stages and survival rates drop.

Q5: There are many aspects that people need to be more informed of when it comes to CHD, so which are the areas that need more work? And do parents with new-born babies from all social strata need awareness?

A: Awareness is unquestionably required at all economic levels. In a country as varied as India, superstition, and misinformation are abound. Even well-to-do families have worries that are unrelated to money. Certain parts of the country even now regard girl children as inferior and may be opposed to preserving their lives. Some even view daughters as an exclusive obligation for the next 18 years or so until she marries.

While the lower income groups and middle class are likewise concerned about the expense of these procedures, they are unaware of the numerous government assistance programs and foundations that may help them cover the costs of their treatment or make the procedure run more smoothly.

The most significant barrier to therapy for many children across the country is a lack of utilization of various treatment facilities. Diagnostic outreach must also be strengthened in order to combat this lack of awareness.

Q6. Do you also go to villages for this kind of outreach? Or do patients come to you after the diagnosis?

A: Yes, I have continued my outreach on a personal level, despite the pandemic. Many people come to see us for therapy. I’m here for the love of it, even though we know we won’t make much money because we have a higher regard for our patients. Every patient has a unique tale to tell. So far, there have been innumerable success stories keeping me motivated and eager to assist even more children.

Q7: Any stories or memorable moments you would like to share while volunteering for Genesis Foundation?

A: So, I have been a volunteer purely because I am following my passion, and so are the other paediatric cardiologists who are working for this cause. Paediatric cardiology is not as well-paying as other fields, since the children and families come from underprivileged backgrounds, but we still chose this field of medicine.

As it is my passion to support these little patients, I enjoy every moment because each story a patient brings with him or her is different and unique. I am very thankful to Genesis Foundation to have built this story to a book as each journey has been different. Pointing out one moment would be tough, but I am very happy to tell you that there have been various success stories of patients who are doing well in their life and are now ready to support the cause.

But there is one incident which involved carrying out an open-heart surgery for Tetralogy of Fallot. Extremely unwell with only a 50% oxygen saturation in her body, little Umme Aiman couldn’t even move. What’s worse, her father had left the family, so it was only her mother and maternal grandfather trying to ensure that she could get treatment. Thanks to early diagnosis, she is now in Grade 3, leading a healthy and normal life.

Q8: According to you, how can treatment outcomes be improved among CHD patients?

A: So, we have come a long way if you see from a therapeutic aspect, and we can treat many more patients than the current rate presently. As to what can be improved, we will need more public private partnerships where the government health institutions and private hospitals work hand in hand to provide for the public.

The second aspect what we should focus on strengthening the screening camps program and also various outreach activities so that awareness around congenital heart diseases can increase, while appropriate support can be provided to tackle the same.

It is not difficult to execute this in the present-day scenario, thanks to the availability of technology present, as we speak, we are brainstorming as to how tele-health can help us enforce the screening camp program in a better manner and NGO’s like Genesis Foundation can help us fuel this idea for betterment.

Q9: Can tele-health services effectively close the gap of providing timely diagnosis which screening camps cannot provide due to the pandemic?

A: The ongoing COVID-19 pandemic has gravely impacted diagnosis, but there is always a silver lining present. In this case the rampant evolution and use of technologies assist and guide doctors who are available in a certain area to connect with patients sitting in peripheral towns with limited accessibility to medical care.

This is already being done through video conferencing tools like WhatsApp video etc, but technologies should be more streamlined with the use of artificial intelligence (AI) and machine learning (ML) to provide effective diagnosis and treatment options. Currently I am working on the same and finding suitable partners to support this.

Q10: What are your thoughts on the negative sentiments present around ‘virtual diagnosis’ due to the inaccuracy present?

A: Two important factors, sensitivity and specificity are relied on for accurate diagnosis.  Screening protocols for a person in a periphery, specificity is very crucial in determining the various cases accurately.

Therefore, sensitivity of cases handled should be higher in the central location where people often opt for treatment from. Allocating medical equipment at district hospitals is not easy as you need trained staff for the need for higher ‘specificity’ and ‘sensitivity’ to operate them. This is why ‘virtual diagnosis’ can help encourage ‘specificity’ to get more people treated at better equipped hospitals.

Q11: Why did you decide to volunteer for Genesis Foundation?

A: I have always believed that ‘when like-minded people come together, wonders happen.’ Genesis Foundation’s vision is to see an India devoid of CHD related deaths. I completely support and believe in it, as together we continue to save children from congenital heart defects and simply give life a chance.