TREATMENT AND COSTS

In the past three decades, impressive advances have been made in the treatment of children’s heart disease with continuously improving results. Though medical treatment can control the symptoms of heart disease in children, surgery offers definite cure in most cases, especially congenital heart disease. Most of the treated children can lead an active and productive life with a near-normal life expectancy.

However, surgical treatment is expensive, costing Rs. 110,000 to 200,000 per case depending on the complexity. As nearly 40% of population of India lies below poverty line it is obvious a vast majority of affected children cannot afford such an expensive treatment.

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TYPES OF HEART DISEASES

There are basically two groups of heart diseases in children – one is congenital heart disease, in which the child is born with a heart defect and the other being acquired, predominantly rheumatic heart disease.

Heart disease in children has a high mortality rate. Without treatment 90% of children with congenital heart disease die in the first year of life and a further 9% die before adolescence. Thus less than 1% of children with untreated congenital heart disease survive into adulthood. Even these children have a very low life expectancy of 30 to 40 years.

Children with heart disease can be severely incapacitated. The main complaints are breathlessness, repeated chest infections, cyanosis(blueness), weight loss and growth retardation. The affected children usually require regular medical check-ups. Severe cases where heart failure ensues may require frequent hospitalisation for control of symptoms. Thus heart disease can interfere with the growth and development of the child, including education and extra-curricular activities. The disability caused by childhood heart disease is all the more poignant because most of these children have normal intelligence, not to mention the fact that less than 1% of them survive into adulthood.

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CONTRIBUTION OF GOVERNMENT OF TAMILNADU

India spends about 4.8% of GDP on health of which only about 25% is public expenditure. Medical and surgical treatment for children with heart disease is provided by government hospitals where treatment is free. But, in spite of their best efforts, many of these government hospitals are severely restricted by the dual burden of relatively inadequate resources and excessive volume of patients. A conservative estimate is that there are about 1000 children waiting for heart surgery. Considering the fact that the hospital performs about 300 operations a year, it will take at least 3 years for the current waiting-list to be cleared, not to mention the fact that new cases are added onto the list everyday!

There is usually a long waiting-list of children needing heart surgery. This leads to a situation wherein the optimum timing of surgery has passed and many children become inoperable; they eventually face a tragic death in front of the very eyes of their helpless parents.

The Institute of Child Health, Chennai has a department of children’s heart surgery offering free operations for children with congenital and acquired heart diseases. It caters to the needs of such children not only in Tamil Nadu but also neighbouring states.

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RAISING FUNDS

With the KJ Hospital offering to help the effort in 2003, Dr. Sreemathi decided to raise money through a combination of corporate help and government funds. "There are several government funds giving between Rs 25,000 and 30,000, and one can raise Rs 90,000 for a deserving case, but the problem is lack of coordination and the money never comes in time; one comes without the other and the time limit is violated. By the time you get money from the PM's fund, you might have already returned money from the CM's fund."

Dr. Sreemathi is grappling with the nitty-gritty of raising funds for this cause. At first she wrote to wealthy individuals as also corporates, but got no response. Some of the international charities, such as Ford Foundation did respond and by trial and error she "…realised that there is a particular method of approaching people or organisations for such fundraising." Initially she focused on cardiac surgery, but soon realised that donors preferred complete healthcare projects including prevention and rehabilitation. "So with this new armament I'm trying to get back to all of them!"

She even attended a seminar on donation collection! "They advised us to first understand the donor completely and the reason he may have for giving money. We were told: “Don't depend entirely on the donor’s altruism or philanthropy completely. He might expect something in return”. While some donors don't want their names mentioned, others want publicity and we have to be able to tell the latter how to get it”. The dealings are transparent. "We send a letter to every donor, along with a photograph and contact of the child we have operated upon so they may get in touch with them. The donors are welcome with their suggestions," said Dr. Sreemathi.

The cardiac surgeon says that many celebrities such as Oprah Winfrey give money for charity, but the "…difficulty is getting past secretaries to reach them! If we can reach them I can convince them about our cause as we have two strengths — the genuineness of the team of doctors and the genuineness of the patients we operate upon”. This genuineness, Dr. Sreemathi adds, is being monitored through professional audit.

Dr. Saravanan adds that they had also approached banks with funds for the social sector. One of the General Managers of the State Bank of India responded; "we gave him a list for equipment worth Rs 53 lakh, and he said, `don't cut it, we'll try our best to give all of it'."

Also, there are the usual tax benefits to the donors. Donations are exempt from tax of upto 125% under Section 35 (i) and (ii) of the Income Tax Act.

Only those children from the lower socioeconomic group are eligible for this scheme and the family is required to produce evidence of income. We also encourage the family to contribute to the scheme whatever amount they can so that another disadvantaged child can benefit just like theirs, but this is not a precondition to treatment. One such parent, awe inspired by the surgery performed to save the life of his son, donated Rs. 3000/-, which was actually 3 times his monthly salary.

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Success stories

Name: Mr. Vinodh Kumar
Age: 9 Years
Status: Operated 1 1/2 yrs earlier

Vinod Kumar suffered from Frequent respiratory infection. A hole in the heart between the upper chambers Atrial Septal Defect (ASD) was discovered during one episode of hospitalization. Being the only sibling put their parents in great trauma. They were on the lookout for donors for more than 3 years. His father is a painter by profession with a monthly income of about Rs.500. This was just not sufficient to run the house which comprised of 4 members. About six years ago their house was burned down in a fire accident and their agony was multiplied when they heard that their only son was suffering from heart problems. However god was gracious to them. The government granted them a house for free and their son was operated by us. He is now fine after the surgery and aspires to become a pilot. After surgery Mr. Vinodh Kumar donated Rs.3000/- for the corpus fund which was used along with other donations for surgery on another boy Surya with a defect called Patent Ductus Arteriosus.

Name: Ms.Gayatri
Age: 12 Years Status: Operated

This little one was one of the victims of the Tsunami. Her family lost all their belongings including their house and their fishing boat (only means of livelihood) because of this natural disaster. She was a suffering from frequent cough and fever. Even normal activities like playing or cycling left the girl breathless. On diagnosis it was found that she had a hole in her heart between the lower chambers – Ventricular Septal Defect (VSD). After the surgery she is now well and is continuing her studies. Thanks to the faceless many all over the world.

Name: Ms.Sripriya Vidyakar
Age: 11 Years
Status: Operated

The tiny tot was diagnosed for Atrial Septal Defect (ASD)– Hole between the upper chambers of the heart in a medical camp attended by one of our doctors. She is an orphan. Abandoned by her parents she was admitted into ‘ Udhavum Karangal ’ a home for the homeless when she was 1 ½ years old. She is now pursuing her schooling and is presently in her 7th Standard. After the operation she is fine. She is very intelligent and aspires to become a doctor. Thanks to the founder of Udavum Karangal Mr.Vidyakar.

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SAMRAKSHAK OF LITTLE HEARTS

One of the recent happy occasions for this team was when Mr. Amitabh Bachchan dropped in to visit the place that contributed to his health matters in his difficult times. Dr. Sreemathi grabbed the opportunity to explain to him about the “Needy Little Hearts”. She asked him if he would accept the title Samrakshak or Patron. He chose the former.

And out of his pocket he took his pen and wrote a cheque of 11 lakhs!!

His short note in the visitor's book said -"May the Almighty give you the strength and courage to continue this noble service to humanity".

Here are a few captured moments of happiness.









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PREVALENCE OF HEART DISEASE

On the prevalence of cardiac disease in children, Dr. Sreemathi says that authentic data is not available in India but making projections from western data, six children in 1,000 have congenital heart disease, and five per 1,000 have rheumatic heart disease (RHD). Even though all of them may not require surgery, she estimates that around 1.1 lakh children are born each year with congenital heart disease in lower-middle class homes. Add to this the RHD, and the number is huge. "Forget statistics, I have seen blue babies just dying like flies in the general paediatric ward at the ICH; if we had the means we could have saved them."

She says it is generally thought that cardiac disease is not common, or its treatment is too expensive and only for the wealthy. "But we cannot tell a poor mother that if her child is lucky enough to get diarrhoea he'll survive, but if he gets heart disease, tough luck."

After a recent camp where 460 poor children — some from far-flung places like Kanyakumari and Vellore — from Corporation schools were screened, 38 were diagnosed with heart problems and successful surgery has already been done on four. "After reading about the camp, some children have come forward to help us; one of them got donations of Rs 1,000 each from two different donors; another sold newspapers from home and gave us the money," she says.

She wants to do more camps, but has found from trips to schools and orphanages that "the parents get flabbergasted when you say your child might have a heart problem. Unless you can give them a proper diagnosis straightaway, it's terrible and cruel to tell them that a problem might be there. So we want to get an echo machine, do the test on the spot and tell the parents. For example, it could be a murmur in the heart, which is innocent. We can tell the parents this because later if another doctor sees this and thinks it is a serious problem, they should know the child will grow out of it."

If it's an organic problem, more tests could be done and if necessary the child could be admitted. With plans to do 200 operations a year, and each operation costing Rs 1.1 lakh in a general ward, the Fund needs to raise a total of Rs 2.3 crore a year; "this includes unforeseen expenditure in the form of complications, emergencies, etc."

The most common heart problems in children requiring attention are holes in the heart, blue babies, defective valves, and pus collection outside the heart. "If not attended to, all these children die. So we are talking about saving little lives," she says. In other words, a successful operation would mean many more years to live.

While the KJ Hospital gives rooms and care at a discount, the professionals are also decreasing their fees by 40 per cent and "60 per cent for complications because the cost goes up, and the child may be stuck to the ICU for a longer time," says Sreemathi.

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HEARTY HELPING HAND

Located just 2 kms away from the Chennai Central, K.J. Hospital offers a range of General Medical and Surgical services from renowned and efficient medical professionals. My cousin Dr. R.Narayani, Ph.D in Biochemistry joined there in the month of July 2005, as a Proffessor and Head, Biochemistry dept.. It was there that she met Dr. Sreemathi, a cardiothoracic surgeon.

Dr. Sreemathi, who retired from the Government Institute of Child Health (ICH) in Chennai in 2002, currently in K.J Hospital, says that she has watched for years how corporate/private hospitals are beyond the reach of parents from the lower classes. "Government hospitals are overcrowded and the demand is so huge that however hard we try, we're not able to cope. So I thought I should do my bit to support the government in a small way."

K.J. Hospitals is one of the best-known hospitals of Chennai. But what is unknown to the general public is that, there is a small unit with a Big Heart. This unit, headed by Dr. Sreemathi, takes care of the congenital (inborn) Heart problems of the kids, who are less affluent. In short, it is a charitable trust called the “Less Affluent Kids Cardiac Fund”.

Dr. P.S. Sreemathi is always on her toes to get help to her inexhaustible list of her needy little patients. Dr. Narayani, infected by her enthusiasm, pooled a few thousands from us cousins. My sister Harini Sripada, a software professional, offered her bit by volunteering to develop a website for them called needylittlehearts.org.in. And now, as I too set my fingers into the world wide web, would like to inspire and call upon people with Big Hearts. But first one has to know what is going on there. So read on…

Led by Sreemathi and sponsored by K.J. Research Foundation, a charitable Trust of K.J. Hospital in Chennai, 'Needy Little Hearts' is the logo of the Less Affluent Kids' Cardiac Fund-an initiative by Sreemathi and individuals from the medical fraternity of various hospitals in Chennai.

The programme aims to provide free surgical treatment to 200 children with congenital heart conditions in 2007; the team has performed 15 surgeries since April. What prompted Dr. Sreemathi to launch the initiative was her experience at the government Institute of Child Health (ICH) in Chennai, where she has performed over 4,000 surgeries.

Dr. Sreemathi left the ICH in 2002, and began mobilising medical resources to take cardiac surgery to children from less affluent families.

Dr K. Jagadeesan, founder of K.J. Hospital and Research Foundation and president of International Medical Sciences Academy, explains Sreemathi's vision: "The target group is children in the below poverty line section. Free cardiac operation includes surgery, investigation, hospitalisation, follow-up, rehabilitation, and prevention."

It is teamwork that has helped. While K.J. Foundation and Hospital provides the infrastructure, specialists, surgeons, anaesthesiologists, physicians and cardiologists from the city’s various hospitals perform the surgeries, and help in the rehabilitation of patients.

Said Dr C. Saravanan, cardiothoracic and general surgeon, who gave up practice in the UK to join Dr. Sreemathi: "We are not doing this as sacrifice. Every one of us enjoys it. It's a pleasure to do something that is close to your heart. Nobody can remain untouched, especially when children suffer, and when we know that their condition can be set right."

On her team is Dr C. Saravanan, "one of the few doctors who opted to come back and stay in India and be happy about it," she says. While he was looking for a job in IndiaUK, he was keen "that most of my work should be on charity. Dr K. Jagadeesan (Founder of KJ Hospital) saw my CV and told Dr. Sreemathi and as we were on the same wavelength, I joined the team," he says.

The road ahead for the team is not easy, though. The surgeries cost between Rs 95,000 and Rs 1.06 lakh, or more. As government funds are not always timely, they depend on donations from philanthropists. Dr M. Paul Korath, chief physician, internal medicine, said cardiac disorder was not the only problem. "Malnutrition and anaemia are serious problems. We are only touching the tip of the iceberg, but we have made a beginning," Korath said.

More on this topic:

Prevalence of heart diseases

Types of heart diseases

Treatment and costs

Raising funds

Contribution of Govt. of TN

Success stories

Amitabhji-Samrakshak of little hearts

(Dr Sreemathi can be contacted at kjh@vsnl.net or sreem@vsnl.net)