In a photo clicked by her maternal uncle, Naina Singh, wearing a white and blue striped sweater, looks straight into the lens. Her eyes sparkle and a smile appears on her lips. Nothing seems to go wrong. But on closer inspection, a slight bluish tint is visible under both eyes; her lips are purplish, almost black. And, the skin under his fingernails is light blue.
Naina is only 16 months old. At her age, most babies weigh around 10 kg; she is not even 7kg. Naina has four birth defects in her heart, including a hole, a misplaced artery, and multiple blockages. Because of this, blood flow to her lungs is reduced and oxygen-poor blood flows from her heart to the rest of the body, making her skin blue. “She’s in terrible shape,” says pediatric cardiologist Vikas Kohli, founding administrator of the Child Heart Foundation, which diagnosed Naina’s disease. “She doesn’t have time – a viral infection will be the end of the child.”
The surgery will save Naina’s life, but it costs Rs3.5 lakh and her Noida-based family cannot afford it. Naina’s father is a farmer and her mother is a housewife. Her uncle, a taxi driver, has collected Rs 1.25 lakh over the past year. It will take him another two years to fix the rest.
“Congenital heart defects such as a hole in the heart or the narrowing of one of the major vessels require immediate surgery, a few hours to a few days after birth. If delayed, it can irreversibly affect a child’s lungs and heart, ”says Dr S. Ramakrishnan, Professor of Cardiology, All India Institute of Medical Sciences, Delhi. “If such conditions are treated at the right time, children are cured for life. “
Coronary heart disease could be a hole in the heart, one blood vessel instead of two, abnormal blood flow due to malformed valves and more. “Coronary artery disease is responsible for 28 percent of all birth defects,” says Dr Anita Saxena, professor and chief of cardiology at AIIMS. According to its 2018 report titled “Congenital Heart Disease in India”, the prevalence of coronary heart disease at birth is around 8-12 / 1,000 live births. “Considering a rate of 9/1000, around 13.5 lakhs of babies are born each year with coronary artery disease worldwide,” she writes. “The estimated number of children born with coronary artery disease each year in India is around 2.4 lakh, which poses a huge challenge for families, society and the healthcare system.”
Coronary heart disease is also one of the leading causes of death in children in their early growth phase, says Dr Biswa Panda, chief pediatric cardiac surgeon at Bai Jerbai Wadia Children’s Hospital in Mumbai. He recounts the case of a six-month-old baby with multiple heart defects who, along with his parents, had traveled by train from Uttar Pradesh last year. Shortly after admission, she went into cardiac arrest. A specialist and his team managed to resuscitate her and performed the echocardiogram. The report indicated tetralogy of Fallot, a combination of four congenital heart defects that included a hole, a deformity of the pulmonary valve, a misplaced artery and a thickened right ventricular wall. Surgery could have saved her, but within an hour she succumbed to a second cardiac arrest. “If this child had had access to a competent center closer to her home and if she had been diagnosed even two weeks earlier, she could have survived,” explains Panda. “It was a completely preventable death like so many before it.”
With technological advancements and improved diagnosis, there has been a sharp increase in the number of cases of coronary artery disease. On average at Wadia Hospital, Panda performs two to three surgeries per day, as 80 percent of children with coronary artery disease require surgery. “Considering the birth prevalence of severe coronary artery disease (requiring intervention in the first year of life) of 1.6 / 1,000 live births, approximately 43,000 babies are born in India each year with severe coronary artery disease. , of which only about a quarter appear to be receiving optimal treatment. heart care, ”says Saxena.
Many cardiac care centers, adds Saxena, are located in areas with a low burden of coronary artery disease. There are 60 to 70 heart centers in India; of these, 10 are considered high volume centers, performing more than 500 cardiac surgeries per year. “When you consider critical CHDs, the southern and western states have fared much better,” says Saxena. “States such as Uttar Pradesh, Bihar, Jharkhand and Madhya Pradesh, which presumably have a much higher coronary heart disease burden than the rest of the states, have done much worse. “
Uneven distribution of well-equipped hospitals, lack of awareness, delay in diagnosis, illiteracy, lack of funds and access to health insurance have prevented children with coronary heart disease from getting appropriate treatment and in a timely manner. In Palghar district, near Mumbai, three-and-a-half-year-old Sandesh Patil was admitted to a hospital with pneumonia when diagnosed with a hole in his heart; he was only nine months old at the time. He has been waiting for surgery ever since. “I’m tired of going around hospitals,” says his father Santosh, a farm worker. “No one is ready to do the surgery because I don’t have the money. I beg them to consider me for the government plan, but they ask me to produce a payslip. Where did I get this from? ”
The program Patil refers to is the Centre’s Rashtriya Bal Swasthya Karyakram (RBSK), launched in 2013. It includes early detection and intervention for children with medical conditions, including birth defects, and helps them to endure. free tertiary level surgeries as part of the National Health Mission. Yet on the ground, families continue to struggle. Take, for example, the case of Maharashtra. In 2019, the state decided to end the RBSK because it saw the program as a duplication of the Centre’s new program which envisioned the establishment of health and wellness centers across the country. At the time, Keshav Madhola was trying to generate funds to treat the blocked congenital artery of his two-and-a-half-year-old daughter Amruta. “My daughter was diagnosed late in the past, and to add to that, I had no way of asking the government for funds,” he says. Madhola’s daughter died a year later.
The Paithanes, too, are at an impasse on how to pay for their son’s surgery which cost Rs3.5 lakh. We met Prathiba Paithane with her one month old son in intensive care at Wadia hospital a few days after the operation. They could only pay 90,000 rupees. The family had been informed that the baby would be transferred to the common room if they did not pay the rest. The Paithanes feared their child would contract Covid-19 in a common ward. Atul, the baby’s father, showed us documents that qualify them for assistance under Mahatma Jyotirao Phule Jan Arogya Yojana (MJPJAY). However, the hospital, despite being a charity, would not consider it.
Cardiac surgery coordinator Dhanashree Dichulkar says the hospital has requested the removal of MJPJAY. “The problem is, if the cost of the surgery is, say, Rs2.5 lakh, we only get Rs40,000 from the government,” she said. “So it’s not practical.” She adds that the hospital has quotas under which it performs surgeries for free, but they are limited to three to four patients per month. “The Paithanes had known for three months that they had to organize at least Rs2 lakh,” she said.
The tragedy is that despite technological and medical advancements, coronary heart disease continues to be one of the leading causes of child mortality and morbidity in India “for reasons and factors that are entirely within our control,” explains Dr Manvinder Singh Sachdev, senior consultant in pediatric cardiology. and interventionist at Medanta, Medicity Hospital, Gurugram. The pandemic and the lockdown that followed made the distress of many even worse, after non-Covid treatments and surgeries were put on the back burner. Travel restrictions only added to their woes.
Dr Krishna Kumar, clinical professor and head of pediatric cardiology at the Amrita Institute of Medical Sciences, says facilities for operating on newborns are extremely limited in India. Infant and newborn open heart surgeries are the most resource-intensive medical activity, requiring a concerted effort by many specialists. There is a huge gap between the numbers we need to process and the numbers we are processing. For example, there is only one pediatric cardiologist for Uttar Pradesh and Bihar; he sits in Aligarh. And pediatric heart surgery is not a lucrative specialization. “There is no money for pediatric heart care, and it takes a lot of work,” says Ramakrishnan. “I know of a very skilled senior pediatric cardiac surgeon who is unemployed. So if these older men are finding it difficult, why would younger doctors go into the specialty? “
In addition, it requires high-end infrastructure, which is only available in large hospitals. All of these hospitals are mostly at a loss and are getting their money back from adult heart surgeries, including bypass surgery. In a hospital like Wadia in Mumbai, which receives patients from all over India and abroad, there is only one chief surgeon, assisted by two others.
There is no national policy for CHDs in India, says Saxena. “This, despite the fact that one in 100 babies is likely to have coronary heart disease,” she says. Prabhakaran Dorairaj of the Public Health Foundation of India agrees that there should be a universal health coverage policy to fund such surgeries. “I believe Ayushman Bharat is a start in this direction,” he said. “Forty percent is covered now, hopefully it will be fully covered. ”