The. Little Hearts. Project. Santokba Durlabhji Memorial Hospital, Jaipur

The Little Hearts Project 1 Santokba Durlabhji Memorial Hospital, Jaipur

The Little Hearts Project Santokba Durlabhji Memorial Hospital Jaipur 2

Pain and suffering are always inevitable for a large intelligence and a deep heart. Fyodor Dostoyevsky Angel. Just a year into the world, and the battle scars of life are already evident on her tiny body. Many of her fellow rangers would have been content, nestled against the mother s breast, delighting their parents as they grew strong and big. Angel, however, is just another shade of red the colour of life that throbs beneath the delicate skin of her furrowed chest. It was stitched following a surgery for Tetralogy of Fallot (TOF) with Pulmonary Atresia, a congenital heart defect present at birth. The little heart now beats to a song of victory for it has won the skirmish against death, and given Angel a medal to wear for the rest of her life. As is with victories, this, too, wasn t without its battle. Only the arena was different where man was contending with nature, awareness with ignorance, living with dying. Angel was born a blue baby with TOF for reasons yet unknown to medical science. Her lips, hands and feet were discoloured blue. She had difficulty feeding, cried a lot, and suffered recurrent spells of fever. At nine months, she weighed less than 2 kilos, and had already been through two episodes of unconsciousness. Tetralogy of Fallot was a complex congenital heart disease (CHD) that needed correction. Surgery was the only treatment. And without it, her heart would give her only one in a 10 chance to live till even the first decade of her life. The surgery was a high-end technical procedure that came with a price tag. Few surgeons could treat difficult lesions of the heart such as this with a great degree of success in Rajasthan, Angel s home. That she was born to parents with humble means made the situation even more complicated. But problems rarely come without their solutions. What stands in the way, as Marcus Aurelius said, often becomes the way. Angel won in spite of the 4 5

odds against her when a group of compassionate surgeons joined hands with a dedicated hospital to fight for her heart. As part of Project Little Hearts, Dr Alok Mathur, Director, Cardio-thoracic and Vascular Surgery (CTVS) at Santokba Durlabhji Memorial Hospital, Jaipur, and Dr Sandeep Khanna, Chief Paediatric Cardiac Intensivist from Rady Children s Hospital, San Diego, USA performed 14 complicated heart surgeries in March 2017. The children were between the ages of 3 months and 13 years. The surgeries were performed in state-of-the-art modular OTs of SDMH at its free paediatric cardiac surgery camp.the camp was one of several in a series of similar camps initiated by the two doctors a decade ago where 13-15 needy and neglected children with complex CHD are operated free of cost every year. The team from Rady Children s Hospital, San Diego, USA Daughter of Seema and Devendra Singh, a farmer from Bharatpur, Angel was of these children. And, luckily, not of the 20 per cent who die because their disease may be fatal or because the attitude around it is. The local doctor in Bharatpur told Angel s family their baby was very ill, and may not survive too long without surgery. Holding on firmly to hope that surgery would be the godsend for her, they committed to giving her a chance to live, never mind what it took. Their hope was fulfilled by a hospital that not only had the skill but possessed the sympathy so necessary to life. In Jaipur, the surgeon at the public hospital told us it would take about a lakh and a half for the surgery nearly 50 per cent less than the cost at a private hospital, says Devendra Singh. But we would have to wait two months for our turn. We returned to the village with her medicines. That s when a friend from the neighbouring village told me about Dr Alok Mathur who had also operated upon his child. My father was adamant that we got her operated irrespective of the cost and the outcome of the surgery. We had no guarantees as to her life except that we had seen another child get well. We managed to put together the money and returned to SDMH to meet Dr Mathur. He asked us to get an Echo test done. We were told our baby would need two surgeries: for blockage and a hole in her heart. Next thing, one of the doctors in his team wrote For Camp on our file. As part of the free surgery camp, 10-month old Angel was operated successfully on March 24 without her family having to pay a single penny. 6 7

THE HEART OF PAEDIATRIC CARDIAC DISEASE 1. 3-4 children in 1000 live births all over the world have a congenital heart anomaly 2. About 50 per cent of these will need correction at some point in their life 3. Prevalence of Congenital Heart Defects (CHDs) is not linked to socio-economic- geographical status 4. Only a small fraction of CHD is detected at birth and infancy 5. According to some data, some 1,75000 children are born with CHD annually in India 6. Nearly 20 per cent of the babies die every year for want of treatment at appropriate time 7. Paediatric cardiac care is too expensive for the average Indian family, despite subsidy. It may cost 50,000-60,000 rupees in a government hospital. And four to five times the cost in a private or semi-private hospital 8. Approximately, only 10,000 paediatric cardiac surgeries are performed in North India 9. There is a huge dearth of paediatric cardiac surgeons in India 10. Paediatric surgical programs are not encouraged in private centres as they are technologically more demanding and expensive, besides being associated with higher morbidity and mortality 11. Few specialists choose paediatric cardiology and cardiac surgery over its adult counterparts which are far more profitable, and bring more attention to the doctor and surgeon 12. There is no national policy for paediatric heart care, related, perhaps, to the prevailing notion that CHDs are uncommon, often incurable and, therefore, not worth expending national resources on BUT 13. Simple lesions of the heart account for 90 per cent of CHDs across the world: surgically curable and simple to operate in India. The success rate is 90-95 per cent with surgery 14. Only 10 per cent CHDs are complex and financially challenging 15. Lack of awareness leads to lack of treatment of simple lesions as well 8

Ache of Little Hearts Finds its Echo Workups surgical or otherwise are vital. Sometimes they may take a while before they lead to a good diagnosis, and they have a cost. The cost of initial tests such as Echo Cardiography and, sometimes, CT Angiography for simple to complex surgeries may be anything between Rs 1500-15,000 while the surgery itself costs between 1.5 lakhs and Rs 3 lakh. The workup to Project Little Hearts, when it started 10 years ago, also needed similar investigating so as to get to the heart of the problem. It also had a cost. Of the babies born every year with structural or functional defects of the heart all over the world, nearly half may need surgical intervention or correction during their lifetime. Some may require repeated multi-stage procedures and long term, rather expensive,medical treatment. And if the baby happens to be the child of an indigent family, the anguish of a parent cuts beyond the pocket. Serious limitations of infrastructure, finance and technical expertise in the government sector for these complex and challenging procedures makes matters worse. Consequently, parents of thousands of children diagnosed with CHDs of several kinds at birth anxiously wait for their turn because their hardship hushes their child s right to live. Some die every year for want of treatment at the appropriate time. For a surgeon who is among the handful of 150 paediatric cardiac surgeons in India, credited with doing the most procedures in Rajasthan, Dr Mathur was quick to spot the twin blockages in the system: the sclerosis of awareness among paediatricians, peers and parents in the periphery of the state who believed that a child with CHD was a closed chapter till as recently as 10 years ago. Therefore, there was no point treating such a child. The second challenge, that was true for the entire country, was that the state had few resources for treating CHD. And the first was connected with the second. Consider this: the paediatrician tells the parents their child has this disease but he does not think surgery is going to benefit too much. It is expensive, and the child may still die during surgery. The parent thinks he has no money, and will have to travel to an unknown city for the treatment. And in spite of it all, his child may still not live. With that starts the cycle of attrition from the parents. If the child does not come to us, it has no chance of surviving, rues Dr Mathur. This is unfortunate because simple lesions of the heart account for 90 per cent of the heart disease across the world, and are surgically curable easily. But because of lack of awareness, we end up not even treating simple lesions the success rate for which is 90-95 per cent with surgery. And I can, without any reservations, say that the medical community in India is perfectly capable of treating them but we just don t know about it. It is only with the heart that one can see rightly; what is essential is invisible to the eye. Antoine de Saint-Exupéry, The Little Prince 10 11

So, on the one hand, a lot of effort, says Dr Mathur, went into changing this mind-set. He facilitated interaction with paediatric doctors, and made them aware that most of the CHD was treatable. Even if some of these surgeries were palliative in nature, many children could be restored to health. Those who would need another surgical intervention children with holes in the heart for instance or medicine later, could lead a productive, full life. On the other hand, there was a reaching out to the state paediatric services. We found, to our dismay, that children who were diagnosed and waiting for treatment but could not afford it, were growing. Or the state did not have the facility itself. When the number of patients waiting crossed 1000, we realised this was a big problem. The answer to the problem came from a deep chamber of the heart. Dr Mathur s basic training in cardiac surgery at the prestigious All India Institute of Medical Sciences in Delhi had given him much exposure to such patients and situations. He had worked as Assistant Professor of Cardio-thoracic and Vascular Surgery at Sawai Man Singh Medical College in Jaipur, followed by several private institutions. He instinctively, perhaps, understood that the systemic obstruction needed a graft a program that would not only be technologically state of the art but also bypass high costs inevitable to CHD surgeries, depending on how simple or complex they were. With that was sounded the first beat of Project Little Hearts. At the time he was Director Cardiac 12 13 Surgery with another Jaipur-based hospital when Dr Mathur crossed paths with Dr Sandeep Khanna, a colleague and senior from medical school who was working at University of San Diego, Rady Children s Hospital, USA a tertiary care centre for paediatric diseases. He was a paediatric cardiac Intensivist whose daughter had been cured of a congenital heart defect by surgery. Shared passion brought them together on the project. Dr Khanna would sponsor a team of specialists to travel from the USA for the surgeries. And Dr Mathur would shortlist the children in Rajasthan who urgently needed the surgery based on only two criteria: the family would have to be from lower economic strata, screened at different government hospitals of the state, and the child should have been diagnosed with complex congenital heart defect treatment, facilities for which were not available with the latter. Of course, in the course of the project, the surgeons and their teams would also end up doing simple lesions as well. Pain made worse by poverty had found an echo in their hearts. STATE OF CHD IN RAJASTHAN Two-fold problem: till as recently as 6-10 years ago, lack of awareness that CHD is treatable; limited finances with the state government Limited detection abilities of paediatricians, especially on the margins. Several still believe that a new-born with a CHD will not live, in spite of surgery Lack of resources with the family and unwillingness to travel to an unknown city for surgery, compounded by paediatrician s outlook State hospitals not equipped to treat complex defects Long waiting time at the paediatric hospital in State Medical College, Jaipur. Numbers on the rise

New Challenges, New Pathways By the time two-year-old Pratigya s father from Beethnok village in Bikaner came to SDMH, she had been diagnosed with a rare congenital disease Dextocardia with Atrio-Ventricular Discordance in which the heart points towards the right side of the chest instead of the left. She had multiple issues Double Outlet Right Ventricle, Ventricular Septal Defect and Pulmonary Stenosis. She had had an episode of unconsciousness, had very blue nails and lips and developed FTT, or Failure to Thrive, indicated by lack of weight gain, fatigue etc. Pratigya was born blue in a government hospital in Bikaner. But even doctors at one of the wellknown private hospitals couldn t understand what the matter was with her, says father Prem Kumar. I was advised to take her to Bombay or Delhi. But for someone like me who hadn t gone beyond Bikaner, Jaipur was the closest. I was also told that the surgery will cost anything between Rs 2-2.5 lakh. I am a labourer. I have just enough money to feed my family on a daily basis. So I took my baby to Shri Sathya Sai Hospital in Chhattisgarh because they do not charge for operating children like my daughter. However, I was told I would have to wait for several months. Then another doctor in Bikaner advised us to go to the government hospital in Jaipur. They diagnosed her problem. Then I heard of the camp at SDMH. Pratigya, however, developed a cough and cold and the surgery could not be performed, given the schedule of the camp. Dr Mathur advised them to return to the village, and bring her back once she had recovered. But the camp would be over by then. We were assured that, irrespective of the dates, my child would definitely have her surgery because she had been registered for the camp. We returned after a few days, and Pratigya was operated upon in the second week of April. We stayed at the Vishram Griha on the premises of the hospital. All I had to pay for was the medicines. Till today I do not know how much her surgery cost. I never asked Not that I even have that kind of money. Sirf itna pata hai ki meri bachchi theek hai. Khaansi-zukam ab nahin hota. Neelapan nahin hai, gori nikal ayi hai. Khaati hai, khelti hai. 14 15

Little Pratigya underwent a Bidirectional Glenn Procedure, one of the surgical techniques that would alleviate cardiac function in the severe structural heart disease. The surgeons gave her new pathways for increased blood flow to the lungs. The understanding that surgery is still in the process of learning and evolving, united with the spirit of making whole some of the disjoints in their field, has enabled the project leaders to take on new challenges, and give similar new paths to Project Little Hearts. They have been keenly working on increasing the complexity of surgeries every year. Unlike in the USA, where the practice of intra-uterine diagnosis for heart disorders is very aggressive, surgeons in India see patients with the same diseases at the age of 10 or 12 years. This is a completely new subset of patients with CHD. The child may come to us with kidneys not working well, for instance. These are complexities of having the lesions for so many years. The blood becomes so thick that we have to draw some blood out of the body, and put some saline into it, so that we can work with the tissue. The body of cyanotic or Blue Babies, as they are called, compensates by making more red blood cells so that oxygen can reach the tissue. The problem is: the already notso-perfect heart has to work overtime. The babies and children end up getting strokes in the brain, or heart or kidney failure. This is a segment of patients that a surgeon in the US will never see, explains Dr Mathur. While it is technically more demanding to operate on a baby of two months, it is so much easier in terms of the overall outlook of the patient. This is because the multi-organ involvement hasn t happened, and the heart hasn t lost its capacity to pump when kept on low oxygen for a long period of time. 17

A congenital cardiac repair is as three dimensional as the heart itself. A surgeon dealing with the heart is nothing short of a mechanical engineer who has to assess the length, breadth, curvature, convexity or concavity of a bridge or a girder that has to bridge two fixed (or moving) structures. In addition, he has to ensure that what he creates stands the test not only of vigorous cardiac motion but also the test of time. In fact, he has to provide for something that no engineer has to wrack his brains about: growth. What he creates today needs to stand the heart in good stead for a lifetime. Dr Rajesh Sharma, Eminent Paediatric Cardiothoracic Surgeon; Annals of Paediatric Cardiology Dr Khanna s team of seven-eight people that has been working with Dr Mathur consistently calls him to say they are waiting for the next camp in March. They tell me, we make them do cases of the order of complexity that they don t even do in the US, smiles Dr Mathur. Some of the patients who come in for surgery are fully grown adults. They survive, almost miraculously. The mother, for instance, thinks it is better to have a sick imperfect child than a dead perfect one. Why, when we decide to not do a very complicated surgery, we are also taught that because science is not yet perfect, a living problem might be better than a dead solution, recounts the surgeon. 18 19 When Krishna was born a blue baby, all doctors in Deedwana in Nagore district, where we live, told us that the only treatment for my niece was surgery. Surgery on a new-born it was a scary thought. At least here she was with us, alive if somewhat ill. We opted out, says Om Prakash, uncle of 11-year-old Krishna. But as she grew, it became evident that the little girl was finding it difficult to cope. Saans ki bahut takleef thi use. Vazan nahin utha paati thi, apna school bag bhi nahin. Dimag bahut tez tha, lekin khelne mein kamzor thi. Chalne mein bhi dikkat hoti thi, says the uncle. When she was 7, we took her to one of the well-known super speciality hospitals in Surat where my brother, her father, works. But no one there had ever done the surgery she needed. Krishna had, at birth, the Ventricular Septal Defect (VSD) with Pulmonary Atresia of the small pulmonary arteries. Simply translated, her heart had a hole in its wall that could overwork the heart, affecting its ability to pump efficiently. Fortunately, VSD is one of the most common types of malformations with excellent long-term outlook with surgery. In spite of that, unfortunately, Krishna would have to wait about six years before it would happen. The family had to contend with some holes in the medical wall without very many practitioners to plug them. If the expertise was not missing, its cost was steep. If it was affordable, then the wait was too long for comfort. I was anxious for someone

to at least look at my niece. In 2016 when I came to Jaipur, I was told there was no point spending 3-4 lakhs at a private hospital and was guided to AIIMS, Delhi. There the OPD was extremely crowded an entire room filled with little children and their parents. It took us three days before we got an appointment. The doctor examined Krishna, and asked us to deposit about 70,000 rupees and blood. The surgery was possible, he said, but then told us to come back in 2022! Next we went to Sathya Sai Sanjeevani Hospital in Chhattisgarh where child heart care is totally free of cost. But there was a twoyear wait there as well. Meanwhile, we had no choice but to continue Krishna on medicine. Everyone cautioned us that the delay would kill our girl but no one was ready to treat her. Not in big cities, not in small cities and then I met this surgeon in Jodhpur who referred us to Dr Mathur in SDMH. It took the two surgeons and their teams about five hours to operate upon Krishna to relieve her of spells of breathlessness and fatigue, and her family of the financial fallout. The procedures at the camp covered a wide spectrum of complex surgeries for Tetralogy of Fallot, Atrial Septal Defect, Cavo-Pulmonary Shunt (Stage I Operation), Glen Kawashima, Cavo Pulmonary Shunt (Stage II Fontan Operation), BT Shunts Operation and Aorta Pulmonary Window Operation. The distinction between simple and complicated surgeries is really arbitrary. People with experience are now trying to get more and more defects into the simple category, informs Dr Mathur. Uncomplicated holes in the heart and obstruction of great arteries of the heart are simple lesions. The Atrial Septal Defect and Ventricular Septal Defect are two types of holes which could be put under the simple category as can PDA and Co-arctation of Aorta diseases of the great vessels of heart. 20 21

With experience, we now know something like Tetralogy of Fallot, a congenital heart defect with multiple lesions, was complex at one point in time. But we have a lot of experience now, and it is a very common disease. Dr Prashant Mahawar, who has been with Narayana Multi-speciality Hospital, Jaipur, for about eight years and is Head of Paediatric Cardiology there, points out to the two aspects of CHD: volumes and complexity. Project Little Hearts came at a time when all patients of congenital heart disease were referred to the capital city of Jaipur from district hospitals of Rajasthan. Hospitals such as Fortis and Narayana were also not equipped for such surgeries, and patients had to mostly go to AIIMS, Delhi, which was already bursting at its seams, and had a long waiting time. Dr Mathur pioneered these surgeries in these parts at the time since he was very keen on paediatric cardiac surgery. Today, in terms of volumes, we are able to do in a day what the Project perhaps does in their week-long camp. But the degree of complexity of CHD that the surgeons handle is its USP. On the other hand, the CMEs and Dr Mathur s continual awareness work has helped make paediatricians aware, and to refer patients for surgery. MOST COMMON CHDs: Hole in heart Obstruction of main arteries or veins Abnormal connection of arteries or veins All the above can exist together SIMPLE CHDs Atrial Septal Defect (AST) Ventricular Septal Defect (VST) Patent Ductus Arteriosus (PDA) Co-arctation of Aorta (COA) COMPLEX CHDs Tetralogy of Fallot (TOF) Transposition of Great Arteries (TGA) Total Anomalous Pulmonary Venous Connection (TAPVC) Need and Fulfilment: An Anastomosis Every year for the last 10-odd years, Dr Mathur says they have been trying to simplify the perception of complex CHDs through holding education programmes for paediatricians in the remote areas of the state. While he continues to do relatively less technically demanding surgeries through the year as part of what is in effect a year-long free camp, he travels to hold CMEs, and talk to his peers, who are surprised that the surgeries can be done at a far lower cost. The process is very satisfying because it has helped the patients tremendously. In the last five years, we have been hugely oversubscribed for the week-long camp which is held mostly in March. Patients start calling us soon after in April asking us when the next camp is. But we can only do so much in a week two surgeries a day, sometimes just one. So we try and do the simpler cases; about 30-40 the year round, and money keeps flowing the year round too. My estimate is we end up doing 30-50 lakhs worth of such work: donors keep calling us to ask how they may contribute, and patients keep calling us to say they have a child who needs this surgery, but not the money. For the surgeries that Dr Mathur feels cannot wait until the next camp, he ensures that the patient gets to AIIMS, Delhi where he was trained and with whose doctors he has kept in touch. Survival of the baby is far more important than the success of the camp, he says. I cannot even imagine suggesting to the parent to wait for the next camp just so that I can do a surgery during the camp. But if my paediatric cardiologist thinks the baby is going to fare well we keep calling the parents back in the interim to check on the baby and can wait, we take him or her for the next free camp. 22 23

As I said, attitude was the bigger wall, finances the smaller one. We have learnt over these years that there are so many people in society who, if assured their money is really going to help someone, would turn their pockets out. That s a huge change over this decade. Propelled, in some measure, by aid from the Chief Minister s Relief Fund for these babies, Project Little Hearts started first in Rajasthan. While there were premier research institutes and hospitals in North, West and Central India, they were either not equipped to handle these surgeries till as recently as a couple of years ago, or were overcrowded and mismanaged. Most of them continue to swarm with patients, while renowned centres in South India are logistically difficult to access. Given the situation, Little Hearts has expanded to receive patients from Punjab, Haryana, Western Uttar Pradesh and adjoining Madhya Pradesh. 24 25 With interest growing, the number of children to be operated upon at the camps has gone up by a few notches. The surgeons have made sure that starting with investigations and medicine, to the cost of surgery, everything is borne by the project. The good thing is the hospitals I worked with earlier, and now SDMH, have been extraordinarily helpful. They have charged us at cost price and taken no profits from these camps. That helped us to operate more in less, smiles Dr Mathur. The response of SDMH has been phenomenal. Not only did the Secretary of the SDMH Trust Yogendra Durlabhji put all infrastructure and other resources at our disposal, he also made sure that the gap in finances was borne by the Trust. He has assured me of support, and insists that we carry on this work continuously and on a much larger scale. Our two big concerns are Paediatric India and Poverty India. And we would like to address them, says Mr Durlabhji. I want to understand who and what the paediatric child, the paediatric cardiac child, the neurology child,and so on, are about. We now have in-house expertise to look at paediatric cardiology in depth, and we would like to use that. I would like us to be a seamless organisation, not merely a hospital for the rich. Unfortunately in India, any service or facility that caters to the rich also becomes totally commercial. I don t think that has to happen. Nor do I think an extreme left approach to wealth is the answer. A lot of the rich who come here leave sufficiently enlightened. We find them mellowing, melting and desirous of helping. That has led to a visible shift in how people perceive a private hospital, says the surgeon. One of the initial hurdles was, in fact, in the minds of the people who rightly believed that free camps notwithstanding, there were bound to be hidden costs. We have people coming to us only from humble backgrounds. And it is equally humbling for us to be asked questions like Aisa to nahin hoga ki aap baad mein paise maangenge? ( Will you ask us to pay for the treatment later? ) or Saab, dava ke paise bhi isi mein hain kya? ( Sir, does the cost include the cost of medicine as well, or do we have to pay for it? ) or Saab, inke paas bilkul paise nahin hai. Baad mein udhar to nahin lena padega? ( Sir, these are poor people, with very little money. Hope they won t have to borrow later to pay for treatment. ) We have, I think, gone overboard in trying to tell the parents to not spend a single rupee during the camp. There have been occasions in each camp when a patient has ended up with post-operative

complications; the costs have gone up exponentially, and we have spent 3 lakh rupees on that surgery. But we are committed in saying to the family that whatever be the situation or howsoever expensive the surgery, we will not translate the cost to them, says Dr Mathur. Patients come for post-surgery follow-up which are not very frequent in paediatric cardiology at SDMH. The endeavour, says the surgeon, is to keep it free of cost to the former. Neither the follow-up nor the medicines are very expensive. They leave it to the family and if the latter cannot afford to buy them, the doctors ask pharmaceutical companies to provide sample medicines. Exponential costs, however, are not without their collateral benefits. Dr Mathur s team has gained from these experiences. He feels the group of people that his team can handle has gone up over the last decade. Several of his patients need no longer wait for the next week-long camp because the main pumping chamber of 26 27

Little Hearts in India pumps through the year! It s a win-win. It excites the US team a lot that they have been able to share and transfer the technical expertise to the group they have been working with. That s the ultimate benefit of science that there are more people who can do technically challenging surgeries. This paediatric cardiac surgery camp has been an eye opener. We operated upon 13 children where they would have died. As a hospital, we want to do things that no one will touch with a bargepole. I want to build a permanent centre for CHD. The US team asked me what we thought of their program and I said to them: Too timid. One camp a year is hardly enough. Where is the growth, evolution and permanency in this? We are looking at a dedicated centre one that treats a new-born with a hole in the heart. That s the scale I want to operate on. People ask me where the funds will come from. They will come there s a god above, says Mr Durlabhji zealously. Currently, Dr Mathur and his team are operating 95 per cent of the children on their own. In the last eight years, they have operated upon 130 children. We have come a long way, says the surgeon with satisfaction. Angel, Pratigya, Krishna and several other children too have come a long way. But it is perhaps early days. Some of the children need repeat procedures. Yet, they are harbingers of palliative surgeries that tantamount to cure. Krishna s mother Lalita says her daughter runs up and down several flights of stairs all the time and carries her own schoolbag. Jab woh kehti hai mere sar mein dard hai, to main samajh jaati hun ki ye to bahana hai. Woh ab bilkul theek hai, she laughs ( Sometimes when she complains of a headache now, I know it s just an excuse... She is perfectly well! ). Dr Mathur is a good doctor, uncle Om Prakash recounts their last follow-up visit to SDMH. He put Krishna on his lap as he spoke to us. I have already sent a couple of patients with similar problems to Durlabhji hospital. It is clean, has a good residential facility and inexpensive places to eat. I hope that the annual camp continues because it is very beneficial for people like us. 28 29 For Seema, mother of Angel, her baby s wound is still fresh in her own heart. She is apprehensive

when she says she splits the Ecosprin tablet into three, powdering one part, mixing it with water, and administering to her baby to keep her blood thin and flowing, for the next round of surgery to plug the hole in her heart. But in her nervous laughter as she hugs Angel close is the story not only of her daughter s tryst but stories of several children born with congenital heart defects (CHDs) in India, that are no longer condemned to end without so much as a murmur. 30 31

October 2017 Text, research and interviews: Bhavana Pankaj Photographs: Ajay Lal and SDMH Design and production: Designations, New Delhi Santokba Durlabhji Memorial Hospital cum Medical Research Institute Bhawani Singh Marg, near Rambagh Circle, Jaipur 302015 Phones: (+91-141)2566251-58 E-mail: sdmhos@bsnl.in and info@sdmh.in Website: www.sdmh.in 32