Patching the Holes in the Treatment of Congenital Heart Defect in India

Patching the Holes in the Treatment of Congenital Heart Defect in India


India is the most populous country in the world with 1.325 billion people on last survey. The birth rate is 24/1,000 women compared to 11/1,000 women in North America, or 2.4 birth to 1.6 birth per woman, respectively. The number of total births per year is 28 million with an infant mortality of 42 to 50 deaths per 1,000 birth. Prematurity accounts for 14% or 300,000 deaths per year. Congenital anomalies of all types account for 1.2% or 33,000 deaths per year.

Congenital heart defects have an incidence of 0.8/100 birth and it is consistent in almost all countries. Therefore, 224,000 infants are born with some forms of congenital heart defects. Not all infants born with CHD will need cardiac surgery but it is estimated in North America that approximately 40% (89,000 infants and children in India) needs open heart surgery.

Recognizing the fact that the majority of those born with CHD do not receive timely treatment, the overall burden of children and adults with untreated CHD is likely to be considerable in India but very difficult to quantify, whatever ones uses the DALY or QALY assessment tool developed by WHO in the early 1990’s.  Even more so, the burden of Rheumatic Heart Disease in India is likely to be substantial with at least 2 million people and a large proportion of the affected individuals are children and adolescents. Other pediatric heart diseases such as idiopathic pulmonary hypertension, Kawasaki disease, myocarditis and cardiomyopathy, rhythm disorders and, Takayasu arteritis, are all well characterized in the Indian context. They all need specialized attention, ideally in pediatric heart programs. Infant and newborn open-heart surgery is among the most resource-intensive care in medicine and comprehensive pediatric heart care that seeks to address all forms of pediatric heart disease are found in only the most advanced countries with robust health systems.

It is generally recommended from North America studies that a pediatric heart surgery program with the capability of performing 200-500 operations is required for a 5-10 million people area. With the current population of India, this would translate into a requirement of at least a thousand pediatric heart centers for all of India. Because of the specific challenges, dedicated pediatric cardiac programs have been slow to develop. Although these numbers were from 2006, there were 14 pediatric cardiac facilities doing 6500 cases per year. From 2015 statistics, it was estimated that there were less than 50 centers in India with the capability of infant and newborn open-heart surgery providing a minimum annual caseload of 200 operations per year. The majority of these are a part of “for-profit institutions” and fewer than 10 of these were in the government sector and outcomes are directly related to expertise, experience, resources and quality of services. There are certainly a few more centers today but the data is difficult to obtain on the exact number of centers.

Very few of the existing pediatric heart centers in India can be considered truly comprehensive by prevailing western standards. Most programs are forced to share resources with busy adult cardiac programs without which they would not be economically viable. The most serious deficiencies are in nursing, intensive care physicians and dedicated pediatric heart surgeons with the capability to perform infant and newborn cardiac surgery. There is also a serious lack of ability to provide timely diagnosis and referral and general awareness of the magnitude of the problem among the primary health care professionals also resulting in late presentation or, often, untimely death.

One could argue philosophically that in a country with extreme malnutrition and malaria, as well as lack of clean water supply and inadequate housing, should not even be attempting to repair hearts in children, an exercise that can be expensive and, at times, a palliative one. But it is ultimately a poor argument as it can be debated that every disease needs to be treated on the same merit, and pediatric cardiac care deserves its equal share of resources, education and awareness.

Universal health coverage (UHC) can be defined as the existence of a legal mandate for universal access to health services. The ability of a country to provide universal health coverage for all its citizens is a powerful indicator of its development. India ranks among the lowest in the world when it comes to public health spending, investing 1% of GDP per year on health. Starting in 2005 with the establishment of the National Rural Health Mission (NRHM) there has been an effort by the government to improve health coverage in India. In January 2015, the Indian Government released the National Health Policy (NHP), which prominently includes in its goal “universal access to good quality health care services without anyone having to face financial hardship as a consequence”. More recently, the Rashtriya Bal Swasthya Karyakram (RBSK) scheme was announced specifically for children in India. This is a new initiative aimed at screening over 270 million children from 0 to 18 years for the four Ds — Defects at birth, Diseases, Deficiencies and Development delays, including disabilities. It is stated on the first page of the operational guideline that children diagnosed with illnesses shall receive the follow-up, including surgeries at tertiary level, free of cost under NRHM. CHDs and rheumatic heart disease (RHD) figure prominently in the list of conditions included for universal coverage under RBSK scheme.

Potential payment schemes in India vary between the states, with grants-in-aid up to Rs. 80,000 to Rs 100,000, with direct payments to hospitals or with direct coverage to families. Very few families have private insurance, which leave over 80% of families responsible for the care of their children. Although the cost of pediatric cardiac surgery is low in a government institution, the cost in the for-profits private institutions varies from Rs. 200,000 to Rs. 350,000 ($3,800. to $6,700.) To be able to maintain a pediatric cardiology and cardiac surgery program with required staff, equipment, resources, training and quality of care, many private institutions advertise their services on line to attract private paying patients/families from around the world. Chocking as it may seem, it is unfortunately a reality that poor families are grossly limited in their access to care.

For 6 years, I had the privilege to work as an independent consultant in Chennai, India. I experienced all the difficulties and realities of life cited above. My colleague, a pediatric cardiac surgeon colleague who trained in New Zealand, returned to his native Chennai and started his practice at Apollo hospital that provided pediatric cardiac surgery. Too often, adult emergency cases would displace his pediatric cases or he would get afternoon operating time which did not provide appropriate time for pediatric cases. The staff had limited pediatric skills, including OR nurses, perfusionists and ICU personnel. His babies, infants and children would take beds among adult cardiac patients in ICU. The pediatric cardiac surgery program would have limited funding and resources supplied by the adult cardiac surgery program. It was a very frustrating and a difficult set up but it was the only way that the Apollo Hospital administration was able to fund a pediatric cardiac program.

Then in 2008-09, the Apollo Managed Care organization decided to open a dedicated pediatric hospital in Chennai. The Apollo Managed Care organization is one of the biggest for-profit health care delivery in India and Asia. It is well recognized, locally, nationally and internationally. My colleague left his adult practice and devoted his practice in building a pediatric cardiac surgery program at the Apollo Children hospital. He was the only pediatric cardiac surgeon with limited expertise and experience. There was one pediatric cardiologist, well trained in England, with several years of experience and practice in England who had come back to Chennai. At least, there was a pediatric cardiac ICU separate from the general pediatric ICU, there was one dedicated Operating Room with proper equipment and resources. There was a dedicated pediatric cardiac anesthetist, pediatric fulltime perfusionist and cardiac OR nurses .The funding for the pediatric cardiac surgery program was 95% covered by paying patients.

My colleague started his practice with cases he could handle, complexity RACHS 1-2-3 (international risk adjusted classification). I came along in 2010 to offer my help and mentoring for a period of a month per year. We started to discuss surgical cases in a new forum so the team would enhance its cooperation on patient care and everybody on the team would be aware of the cases coming up and potential difficulties. I scrubbed on all cases as first assist providing guidance, technical and surgical information. The relationship with my colleague became stronger based on mutual respect. He was very opened to any suggestions, as the pediatric cardiologist was during cases discussion. I gave a series of lecture during my month of work for the 6 years I was involved. It covered congenital heart defects, pediatric anesthesia, pediatric perfusion and ICU. I also realize that the setup of their heart lung machine was below standards owing to a lack of funding. I brought the pediatric perfusionist chief from BC Children hospital, Vancouver, and together with them, we look at cost of new equipment purchase, and decided to change the configuration of the pump, improving safety, cardioplegia delivery, flow dynamic, and pump priming volume. It lead to much improve safety on bypass and substantial decrease in the use of blood product. The number and level of complexity of cases increase progressively over my 6 years of involvement, leading to the hiring of another pediatric cardiac surgeon, another anesthetist, another perfusionist, and a clinical nurse assist. Along the way, the cardiac quality assurance program was enhanced, mortality and morbidity discussed more thoroughly with full reporting to the administration. But I also learned that the full reporting had to be crafted carefully, meaning no recognition of a surgeon or staff mistake, such that the international reputation and ability to attract patients was not impacted negatively.

In developing countries, the lack of mentoring, the lack of experience, the difficulties of practice, too often leaves surgeons to themselves to make patient care decisions, and perform operations that they have not enough or little experience with. One day at the clinic, I was asked to review the echocardiogram of a newborn. The baby had transposition of the great arteries but unfortunately with associated pulmonic stenosis. It was a contraindication to an arterial switch which my colleague agreed with. After convincing the parents that no open heart surgery could be done, they left very unhappy. Although a follow up was organized, they did not come back. It speaks to the paucity of follow up in India that other developing countries experience. Parents may think their child is cured after surgery and do not see or understand the need to come back. Most likely it has to do with their low income, their lack of money to travel back, the lack of transportation and no place to stay in town.

A year later on a subsequent trip, I was in the clinic and the mother of the same child showed up without appointment, carrying this small child in a dirty blanket, limp and barely moving, breathing with difficulty, and cyanotic as I have never seen. She had gone home and waited for the child to be in extremis to come back or perhaps even die. The oxygen saturation level was not measurable, the hematocrit was 78 and the hemoglobin 24, numbers that are not compatible with life. My presence as a mentor gave the surgeon and the team support to tackle this patient. We established urgent plasma pheresis all night, had a team discussion to review all the steps of anesthesia, setting up the heart lung machine, the cardiac surgery step by step as expeditiously as possible and so on. The next day, the baby was brought to the OR with a hematocrit of 74, hemoglobin of 20 and the team worked cohesively and expeditiously. the baby survived the shunt surgery without problem, was intubated the next day and sent home at 7 days. This was an amazing accomplishment for the team as they were initially uncomfortable to carry on with any treatment.

As mentioned, the payment schemes vary from states to states, making it difficult to understand how it works. In the state of Tamil Nadu, the hospital is funded to the amount of almost Rs. 100,000 for pediatric cardiac surgery. As I discussed earlier, over 90% of the hospitals are for-profits institutions, such as the Apollo Children’s hospital. My colleague would have to answer to the administration if his budget was in the negative, meaning if he had done patients that cost more than what the hospital was reimbursed for. This creates an impetus to ensure the cases will do well and a patient will not have complications and be in ICU for 2 weeks. To expand the case load, we would go from time to time to the public hospital to get public funded pediatric cardiac patients. I have never been so distraught in my life. We were two white shirts well dressed doctors, coming to a room of 20 poor women with babies in their arm or children hanging to them handing their babies or children to my colleague and I so we could choose them. We were able to choose only 3 or 4 of the safe and easier cases so they could be operated on and leave the hospital in 4 days and fit in the government reimbursement scheme. If my colleague was wrong or a complication arose, the responsibility was on him to increase the price on the next private patients to cover his negative balance with the administration. It was mind boggling and shocking to me but the sad reality of everyday business, health care or not, in India.


In summary, the present challenges experienced in India are many. Beginning with the larger picture:

  1. India is a country where there is a huge gap between what is available in rural communities related to social determinants such as clean water, housing, basic health services, and the cities where better quality of life is available. India needs to keep working hard on these issues and to reduce the impact of the class system on the allocation of health resources.
  2. The Indian government needs to increase the proportion of its GDP, currently around 1%, toward health care services.
  3. The increase in health care services funding is required in rural areas where the pediatric cardiac care is almost non-existent.
  4. A system for allocating the existing pediatric cardiac services is required such that the public health care system is better serve by the private system. To that effect, a greater cooperation is required between the federal government and the private health services to provide increase access for pediatric cardiac care. One strategy would be to facilitate and increase the process of reimbursement from the government and states to the private organizations so more poor children with CHD can be taken care of.
  5. Through education and training, alternative health care practitioners, for example, nurse practitioners and/or physician assistants, can provide basic health care services in the rural communities including awareness of pediatric congenital heart disease.
  6. There are very poor mechanisms to collect data on congenital heart disease and its burden, in addition there is no mechanism to take this information and help health resources planning.
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