Every child deserves a healthy start in life—but for many born with congenital heart disease (CHD), access to life-saving treatment remains out of reach due to financial constraints. The Child Heart Foundation (CHF), founded in 2013 by Dr. Vikas Kohli and a group of determined parents, is working tirelessly to bridge this critical healthcare gap.
In this interview, Dr. Vikas Kohli, a leading Pediatric Cardiologist and Founder of CHF, shares insights into the challenges of pediatric cardiac care in India and how CHF is making a difference. He speaks about the pressing need for early diagnosis, the unique struggles of underprivileged families, and how CHF’s holistic programs—from fetal heart screenings to complex surgeries—are saving lives. Dr. Kohli also highlights inspiring success stories, the role of strategic partnerships, and the foundation’s future plans to expand access and equity in cardiac care.
Through his words, we understand the deep impact CHF has made and the powerful mission that continues to drive their work: ensuring no child is denied a chance at life due to the inability to pay for treatment.
Q. Could you elaborate on the current state of pediatric cardiac care in India? How significant is the burden of congenital heart disease (CHD) among children, and what are the key barriers to treatment?
A. Though pediatric cardiac care is rapidly advancing both in technology and accessibility, it is still at an early stage where there is no universal provision for all children to be treated or all their long-term medical needs can be taken care of. Truly only a small percent of kids are being taken care of, possibly 10%. Additionally, there is a shortage and lack of manpower, and there doesn’t seem to be a plan to generate enough manpower over a longer period of time.
There is a major discrepancy between the north and south Indian states in healthcare. Since health is a state agenda, there is a variability in care provided by each state. There is a lack of awareness amongst the medical community, with the medical community not being taught of the advances in this field.
Q. What are the primary challenges that financially disadvantaged families face in accessing timely diagnosis and treatment for CHD? How does CHF step in to bridge this gap?
A. There is a dichotomy between the hospitals that provide free or low-cost treatment (too many patients and no operating slots) vs. private hospitals (too few patients but funding needed for surgery).
The problems begin with the diagnosis, usually delayed due to a lack of diagnostic and specific facilities in the majority of towns (except tier 1). In addition, there is at times a delayed diagnosis by the primary pediatrician too. These result in prolonged and unnecessary treatment. Also includes unnecessary expenditure. At times it can cost the life of a patient.
Beyond this stage, the patient gets referred to a tier 1 city, most likely to a government hospital. They then realize that here, getting an echo itself is a challenge, leave alone surgical dates. Surgical dates may not be available for a few years at times.
The family then starts searching for a hospital where they can get the child treated and discover the costs are prohibitive (in most cases). Finally, they land at an NGO, or if not, they may give up. This is the typical cycle through which a patient and family have to go.
CHF steps in at all levels:
- Antenatal diagnosis-free via education of obstetric departments and practitioners
- Early screening-camps
- Increasing Dr. Awareness- interacting with primary care drs. And informing them of the facilities available
- Free accessible diagnosis-every day OPD is free Collaborations with Govt hospitals – interaction closely with several hospitals
Handling emergency care-providing medicine for emergency care
- Providing medical essential diagnostic equipment-like pediatric echo machines Sponsoring surgery
Q. How has fetal echocardiography (JEEVANSH®) improved early diagnosis and outcomes for children with congenital heart disease? Can you share a case where early intervention made a significant difference?
A. One of the striking cases I remember was referred to as a suspected heart disease during pregnancy, and in our Jeevansh OPD, we made the diagnosis of TGA, a condition that requires neonatal high-risk surgery at high cost. CHF took the challenge and got the baby diagnosed at birth and then underwent surgery for total repair called Arterial Switch Operation. The child is now 4 years old and is a normal child.
Q. CHF HRIDAAN® has facilitated over 586 life-saving treatments. Could you share a few success stories of children who have received timely intervention and how it has changed their lives?
A. One of the issues we are proud of is that we undertake regular risk surgeries and high-risk surgeries. We do not refuse patients unless the long-term outcome is not good. We have undertaken 35 newborn PDA stentings, 8 newborn arterial switch operations, several neonatal PDA device closures, and balloon valvuloplasties. This includes a 2 kg baby who underwent ASO. More than 50 patients with single ventricle have been treated by us. They are at various stages of Fontan completion.
Additionally, we have found other NGOs providing a fixed amount and leaving the families to fend for the rest. We evaluate, and if the family can't afford anything, we do pay the full amount (in most of the cases).
Q. CHF offers a holistic approach, from screening (PraDAAN®) to treatment and long-term management. How have these programs helped in making pediatric cardiac care more equitable in India?
A. The crux of treating a child is long-term management. One-time surgery or treatment may help a child once, but there may be long-term issues as the child grows, and if it is left to parents, they would not want to spend the money.
Unlike most other NGOs, we follow up with our patients not only until 18 years but also beyond.
Q. Despite CHF’s remarkable work, many children still lack access to necessary care. What are some of the biggest hurdles in scaling CHF’s efforts, and how do you plan to overcome them?
A. Collaborating with the state governments and using available funds to treat these children partly (rest provided by CHF) would be a game changer and immediately help several more kids.
Q. What are CHF’s future goals and expansion plans? Are there any new programs or collaborations in the pipeline to further enhance your reach and impact?
A. CHF plans to look at collaborating with state governments and developing more diagnostic centers and a central interventional center. The pacemaker program is one we have focused on. We look forward to developing Delhi-based/state-based programs whereby all children are taken care of for their treatment, including emergencies (which are hard to treat due to a variety of reasons). Since we are focused on North India, working closely with Delhi, Haryana, and UP govts would be our objective.
Q. CHF has built strong partnerships with hospitals, donors, and other stakeholders. How have these collaborations strengthened CHF’s mission, and what kind of support do you seek from potential partners moving forward
A. We seek help towards centralized statewide management of all patients as per the needs that may arise.
Q. As a leading Pediatric Cardiologist, what motivated you to establish CHF? What keeps you driven in your mission to ensure every child gets the cardiac care they deserve?
A. The ability to get a child treated, for a parent, cannot be based only on his income or financial resources. That is why CHF got started and is fulfilling the dream of many parents and families. We seek to accomplish this. Seeing happy children doing what they are supposed to do—play, smile, and grow—is our motivation.
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