Dr Armida Fernandez is one of India’s foremost neonatologists, treating babies born in some of the most underprivileged and marginalized homes in Mumbai. She has dedicated her life to service in public health. From pioneering the cause of neonatology in the country by focusing on low cost solutions that are available to all, she has championed breastfeeding in India and even started the first human milk bank in the country.
In 1999, Dr Fernandez’ founded SNEHA or the Society for Nutrition, Education & Health Action which has two primary goals: that of improving health-seeking behaviour among underserved communities and improving the quality of public health services.
With over 500 people, today SNEHA works across urban centres with women and children and their families with a mission of raising health for all. From working in maternal and infant health care she then expanded her work to domestic violence against women and children and even palliative care, through the establishment of the Romila Palliative care centre in 2017.
Dr Armida Fernandez is in conversation with Sonalini Mirchandani, a former civil servant and the founder CEO of The Communications Hub, a leading development communications organization.
This conversation was recorded in Mumbai.
Additional audio courtesy SNEHA (Society for Nutrition, Education & Health Action).
For more information, go to www.rohininilekaniphilanthropies.org
Welcome to Grassroots Nation, a podcast from Rohini Nilekani Philanthropies, a show in which we dive deep into the life, work, and guiding philosophies of some of our country’s greatest leaders of social change.
Dr Fernandez is one of India’s foremost neonatologists, treating babies born in some of the most underprivileged and marginalized homes in Mumbai.
Born in Dharwad in Karnataka, Dr Armida Fernandez trained as a paediatrician and worked for many years at the Lokmanaya Tilak Municipal General Hospital (LTMGH) and Medical College hospital, or Sion hospital, as it is more commonly referred to as Sion Hospital.
She has dedicated her life to service in public health, from pioneering the cause of Neonatology in the country by focusing on low cost solutions that are available to all, she has championed breastfeeding in India and started the first Human Milk bank in India
For over twenty two years, from 1977 till 1999, Dr Fernandez was the head of the neonatology department at Sion hospital, treating underweight and premature infants born into low-income households. From working maternal and infant healthcare she then expanded her work to domestic violence against women and children and even palliative care, through the establishment of the Romila Palliative care centre in 2017.
In 1999, Dr Fernandez’ founded SNEHA or the Society for Nutrition, Education & Health Action which has two primary goals: that of improving health-seeking behaviour among underserved communities and improving the quality of public health services. With over 500 people, today SNEHA works across urban centres with women and children and their families. And their mission today is focused on raising health for all.
Dr Armida Fernandes is in conversation with Sonalini Mirchandani, a former civil servant and development communications specialist. Sonalini is the founder CEO of The Communications Hub, a leading development communications organization. She is also a member of several advisory bodies including Population Foundation of India, SNEHA and CCDT. She is a Director at Karuna Evam Shanti Vahini Foundation Foundation, set up by her last year, that implements interventions in palliative care, focusing on communities at the margins.
This conversation was recorded in Mumbai, at Dr Fernandez’ residence.
Doctor Fernandez, this is such a pleasure, I mean, to be here this afternoon, looking out at the sea from these wonderful windows in your home, and catching up on the story of your life and all that you’ve done over the several decades. I haven’t known you for so many decades, but it’s been such a privilege and pleasure to know you for the time that I have.
I think I really have to thank Grassroots Nation for making this happen, so thank you for being here, and I would really love to know a little more about how it all began. Perhaps if we go back to the formative years. I do know that neither of your parents were doctors and none of your siblings took to medicine, but here you are – a neonatologist. So could you tell us how that happened?
First of all Sonalini, thank you for being here. I know how busy you are and then you take time from… and a person like you interviewing me, you’ve been in communications, you’ve done a wonderful job, and then you’ve been an advisor to SNEHA and every time you came you added value to SNEHA. So thank you for being here.
So I was very fortunate to be born in a little town called Dharwad, and it’s in Karnataka. And fortunate too, because Dharwad was what I would say heavenly – my childhood, I’m talking of many years ago, actually, 80 years ago. It was a city with only colleges and universities. There were no factories. Gardens and trees and birds and but…, I mean everything that one would want an environment to grow up with. So I had a really lovely childhood. And you’re right, you know that no one was a doctor in my family but I think what my parents instilled into every one of us, not only instilled by way of telling us what to do, but by actually acting what they wanted us to do in life. One is that they were so compassionate and caring, they always felt for people and they reached out to people and I think that was instilled. I think it was also the background of our religion, Christianity, you have to be there for people, to be there for poor, and they did that themselves. And we had a home, you know, everybody was accepted. There was equality, there was no caste, creed, anyone.
So that sort of an environment that I grew up in was a wonderful environment and having put this into my mind that we have to be there for people, probably I felt – now I look back – I felt that the way of reaching out to the people who need you and what would be to do medicine. I know I loved the animals and birds and any bird, animals that were sort of hurt with some wound, like to always try and treat it.
So I next went into medicine. But I think in a way, Sonalini, I must have disappointed my parents. My father was a professor of literature, and I was an avid reader, and he thought I might take up English literature, but I didn’t. And my mother was dead against me doing medicine because she thought it would be too tiring and why, when you can have a good life, why do you want to work so hard? But then I’d made-up my mind, and that’s how I did medicine.
So that’s really wonderful to hear, Doctor Fernandez, I mean, we are really glad that you chose to become a doctor and I’m sure your mum would have just loved to see what you’re doing today. Within the field of medicine, was there something that motivated you in particular to become a paediatrician? I mean, there were many choices, surely. There was cardiology, there was, you know, everybody was looking at OBGYN. So why paediatrics? Was there anything that made you choose that?
So when I finished medicine, I had decided – having worked in Hubli Medical College close to Dharwad – that I would like to work in the rural areas. And I started off working with the Missionaries of Charity who were housed in Dharwad and who used to go into the rural areas and work. And one day a child was brought to me, an infant maybe six or eight months and that child was passing blood in stools. Came from a neighbouring village. When that child went home after a few days, when I asked one of the neighbours who’d come from that village, I said, “What’s happened to the child?” They told me that the child died.
You know, I was filled with guilt. I said, “I finished my MBBS, but why not enough to look after children.” I said, “No, I can’t continue working here. I need to know more about paediatrics because it is a tough path to look after in medicine. I must do paediatrics,” and that’s why I left Dharwad actually. Then I came to Bombay and I was fortunate enough to get a seat in a KEM hospital in Bombay and that’s how I moved and started paediatrics.
Given that you were a paediatrician, there must have been options of choosing to work in the private sector, for example. I’m sure there would have been a huge career path for you over there, but it looks like you made a conscious choice to work within the public healthcare system. Was there anything in particular that made you do that?
You know what, I came to Bombay to do paediatrics but in Bombay, that’s where I met my wonderful husband Rui. And when we decided to get married and we were still deciding to get married, I told him, “See, I want to work in the rural sector.” And he said, “Rural sector? Whatever for?” I said, “The really poor people stay there and that’s where I’d like to work.” So the answer Rui gave me really made me think, he said, “Why do you have to go out to look at poor? Look at Mumbai. Look at the look at the patients that come to KEM Hospital. They’re all poor, they’re all miserable. Why do you have to go out? So why don’t you work here and work for the public sector?”
And I think at that time I decided that… . And I want to give Rui credit, you know, times were tough, we were not financially well-off, we didn’t have a home, we didn’t have… . Actually we had taken loans and he could have at any time told me I think you better move from this public sector that hardly pays, into the private sector, we need the money. But not once. He always encouraged me. That’s where I belonged actually, I loved it, I would do it again.
That’s really something heartwarming that you just said because I think both Doctor Rui and you – this complete dedication to working amongst the marginalised, amongst people who cannot really afford private healthcare and bringing a level of attention and humanism to every patient who is sitting in front of you… . There was another choice that you made subsequently and that was to specialise in neonatology, which was a relatively new term. I mean that didn’t even exist as a subspecialty, if I’m right, around the time that you opted to look at that. Tell us a little bit about how that came to happen.
When I started working in paediatrics, I moved from KEM to Sion hospital and I was working in paediatrics. At that time, obstetricians were still looking after newborn babies. Only when the babies got really sick, then they referred to the paediatrics. And we had a paediatric nurse, we had a premature unit, but it wasn’t one paediatrician – all the people who were in there went and saw babies whenever they could.
Being a young paediatrician joining Sion Hospital, I wanted to go off to a conference. So at that time I decided, I said, “Why not analyse the deaths of babies in Sion hospital?” And to my shock Sonalini, it was the neonatal deaths of sick babies I’m talking of, and premature babies was, you know, over 70%. I don’t know how I had the courage, but that’s what I found. I went to Srinagar and read that paper, I can tell you I was the laughing stock of that conference. I came back and told the head of the department, Doctor Athavale, I said, “Why did you let me do this? Do you know what people said?”
So he asked me one question, “Is that the truth?” And I said, “Of course, I analysed all the data.” And the second sentence was, “Why don’t you do something about it?” You know Sonalini, in that one minute, I turned from a paediatrician to a neonatologist. And from that moment onwards, and for years and years to come, my whole thought was how can I save babies from dying, how could I save newborn babies from dying.
And that’s why I spent all my life after that really being a neonatologist. Neonatology, like you said, where even in paediatrics was not a subspecialty, it came much later. But it was looking only at newborns, finding out why they died, trying to reduce the mortality that really made me the neonatologist I am.
If you would be okay with talking about it, I do remember you telling me once that your own newborn was very unwell soon after she came into this world, that Romila required a level of care, which today it’s taken for granted in terms of the NICUs, but in those days, for a little baby to have to undergo blood transfusions, I’m just wondering whether you could tell us a little bit about that. That was really tough.
I think I need to share that because you know that that time – I’m talking about almost 50 years ago – when a baby had high levels of bilirubin, peri-jaundice in the neonatal period, that bilirubin could damage the brain and therefore we had to change the blood of that baby.
Now unfortunately I’m RH negative and Romilla who was born after many years of marriage, she had this hyperbilirubinemia. And we had to change her blood from the third day onwards. And you won’t believe Sonalini, because the risk, there were 50% chances of risk of her not making it through the exchange. So every time they took her away from me, blood collection and the screams of blood collection. You don’t anaesthetize a baby. As you do the exchange you can hear those cries and then I used to wait for the footsteps to see is my baby coming back to me or not. Not wondering whether… . And of course for, fortunately for her and for me, she made it through those three exchange transfusions.
But this incident changed me totally as a doctor, as a neonatologist. Because when I looked at babies, I used to look at the babies and I used to care for them – what was wrong with the baby, what was the diagnosis? Then I had students and I taught them and we made sure we tried our best to make the child live. But you know, we never looked at the mothers. I had gone through the pain of a mother who almost lost her child. I knew what every mother in that ward, when the baby is really ill, goes through and I think I became a different human being. And all my life, even today, when I look at a patient, I just don’t look at that baby, I feel with the mother. I don’t look, but I feel with the person who’s looking after that baby. I think it made a lot of difference and the way I cared for our patients.
I think that’s a special, rare quality that you bring to everything you do. I mean, I think we have seen it with, with all the work that you’ve done over the years, this ability to empathise completely and totally with another’s pain, it’s rare. Not many of us have that. I think those of us who’ve come to know you are very blessed and fortunate to know that such a thing is even possible. But I’m just thinking back, and you made that resolution that no more babies should die and I’ll do whatever I can to make sure they survive. And you were working in a setting that wasn’t necessarily a high resource setting. I mean a public health hospital like Sion, it was a low resource setting. There wasn’t fancy equipment. Probably there were incubators that had just come in. Today there are terms like thinking out-of-the-box, thinking on your toes, but what could you have possibly done to bring down those infant mortality rates that were really high? Were there certain things that you did? I know that at a much later stage, much of this was incorporated into the public healthcare system, but if you could tell us a little bit about those times and those little innovations that made a difference.
Yeah, when I said I must do something about the deaths, the first thing was – why are so many babies dying? So I had to actually look at the causes of death and why babies died and I found out that most of those babies died of infection. And then I used to say, “What is the source of infection?” And you won’t believe Sonalini, do you know the first cause of infection happened to be the incubators that we’re using?
Now these were not the latest incubators. These were, I call them, prehistoric, they were donated by the UNICEF. They’re all difficult to wash, and there was a little humidifier with water there, which is a source of infection and I realised that because when a baby was born preterm, we put in that incubator, within hours or within a day the baby became septic and I said, “My God, what’s happening?”
And then we took cultures from that incubator and we found the worst bugs – the Klebsiella Pseudomonas – in those incubators. And there was no way of… . One would say, “Clean them and reuse it.” But cleaning it on a regular, we didn’t have the staff and it was difficult to clean. I said, “I have to get rid of the incubators.” So if I had to get rid of the incubators, then how would I keep the babies warm? Municipal Corporation, no budget, no more equipment, and there was no, we just couldn’t buy new equipment and those, don’t forget, incubators were not bought, they were donated. So then I realised that, yeah, Mumbai has the best humidity, 40% – ideal for preterms. That was one battle won. And then I said let me warm up the room. It was a small room, you know, half of this size. So I put warmers and that brought up the temperature. But the smallest of babies were still not being kept warm.
So I started using lamps 20, 40, 80, wattage, so we used these lamps to keep them warm. The other thing is that, sometimes there are places in villages where you don’t have lamps. What would they do? Then I tried putting oil on the skin. Babies, when they lose water through the skin, their temperature drops. If you put oil, the water doesn’t evaporate, so the temperature remains. So here was something that people across villages could do to keep the babies warm. So one was incubators of, one source of infection of, and the babies are kept warm.
The second cause I found out was that it was, babies used to get diarrhoea, and got sepsis and then they died. So what was the source of infection? We were giving babies formula milk, we gave them animal milk and we fed them with bottles. And I said, this must stop.
So what we did is, I got rid of the bottles. I stopped the formula and I stopped animal milk. So what do I feed babies with? I had to feed all the babies with breast milk. And to make it easier, I changed the rules of that unit. I said, “Every mother will be a nurse,” so mothers had ease of access into the unit. They came, they fed their babies, they expressed milk and kept it for their babies, so they got the source of milk.
This helped us because we didn’t have enough nurses. So I said, “Every mother will be a nurse,” because, you know, we didn’t have enough nurses. And what better nurse than a mother? I mean, you know, a mother holds the baby, holds the baby close, feeds the baby, she’s giving them the baby positive vibes that you need to live – I love you, which no nurse or doctor can give. I think that made a whole lot of a difference to the baby.
So the mothers came in, but the only problem was that when some mothers didn’t have enough milk or they couldn’t come up, then I had to use one mother’s milk and give it to another baby. So being a Medical College in a hospital, it was not a very scientific and correct way of doing things. So then I said, “What can one do?” And finally, as you know, I started a human milk bank.
So we ensured a safe, secure form of milk that was banked. So every baby in that unit and the hospital also got just human milk. So that was the second major thing. But you know, simple things, I can’t tell you what simple things you can do. For example, you don’t have towels in a municipal hospital, where do you have disposable towels? You don’t have towels to start with. And so, you know, I had a dryer, put a dryer. I used to tell people why does Sion hospital’s neonatal unit looked like Taj? They would say that we have the dryer to dry our hands on.
Another thing, that people didn’t wash their hands because the wash basin was outside the unit. I shifted… . I can’t tell you, a whole lot of things that were changed, didn’t cost money. That was the most important thing. At that time, people were so scared of neonatology, thinking neonatology meant equipment made meant trained people and what I was trying to tell paediatricians and people who looked after babies, “You don’t need all that, you just make sure that the babies are kept warm, they get the mother’s milk, prevent infection.” And the majority of babies, I wouldn’t say the tiniest requiring ventilation, but the majority of babies can be saved in any part of the country.
That’s an incredible story. And actually it brings me to what you pioneered. And that’s when I’d first heard of you. I heard there’s this doctor doing amazing work with breastfeeding and she wants a series of movies made on encouraging mothers on how to breastfeed. And I heard about you and I was at the Xavier Institute of Communication and that’s when I first met you. But then you went on to actually set up Asia’s first Human Milk Bank, and also what started as an initiative in one hospital soon took on a momentum of its own. Breastfeeding was what was being talked about by UNICEF and everyone. So if you could tell us a little bit about that, what did it take to convince people that this whole concept of a human milk bank is doable, it’s needed, it’s feasible? And I’m sure you must have had to do a lot of convincing and there was probably some scepticism that you must have faced.
There are two things, Sonalini. One is that movement trying to spread, the most important thing is actually for survival of babies is making sure that mothers exclusively breastfeed their babies. So that was the main thing that had to be done. And the movement that was started, and I was one who did it from this part. But many people across the country were trying to promote breastfeeding. But here, when we saw that babies could be exclusively breastfed in a hospital, like Sion, and Sion, the 10-15,000 deliveries for the poorest of people, and here we could actually make sure that every mother could breastfeed her baby. So this was the message, I said, “All other public hospitals could do that.”
So with this in my mind, I had went to see the head of the DMC in charge of hospital, the DMC. But before I did that I knew that when you need to convince people you need data. And I went and asked him, “We found that in Sion hospital, all babies don’t breastfeed at birth and they go home and they come back and they’re… . Can I do a study in all the hospitals of the Municipal Corporation?” And there were quite a few. There were two other medical colleges, 13 peripheral, 26 maternity. So he gave me permission.
And we found, like in Sion hospital, a small percentage didn’t feed the babies at birth, even before they left the hospital. But worse still, when they came back for follow up, a large 20-25% had stopped breastfeeding and they were giving formula. They were using bottles which was the source of infection, giving rise to infection in the neonates, deaths also in infants.
And all those who come to the Municipal hospital are poor patients. They can’t afford formula feed and sterilisation. So with that data, we went back to them and I said, “See, we want to get all hospitals to know that you can convert them, make sure that all babies are breastfed.” So they give us permission. I remember the early days.
I think one question the Municipal Corporation always asks is, “Do you want any funds from us?” I knew if I said, “Any funds,” they’d say no. They said, “No, we don’t need any funds.” And the three of us in our department – Jayshree, Rathan and I, we used to go to hospital to hospital with… . We had our own projector and we went. We met with the you know Superintendent of the hospital and we were taking lectures. Now this was between ‘89 and ‘91. And then ‘91 WHO and UNICEF came out with the Baby Friendly Hospital Initiative.
That was wonderful. And when they came out with initiative, they had funds to do programmes and of course they came and asked us because we were already doing that work and we were so happy. Sonalini, it showed me the difference – when UNICEF said get a project we are willing to fund, once you have funds, you can change the way you work and you can really do a good job. So once we had funds we said we must train people and train them well.
And that’s why we came out probably the first Breastfeeding Manual in India, it’s called the Blue Book. And with the film – that’s what you were talking about, your friends… . We went, we said a film to back the manual. And also we should teach them exactly what to do and how to do. And with that we had an Infant Feeding project. We covered all the hospitals in the city. But the learning from this, and I think that learning is, we have carried it out through all the other programmes I did, you can’t do anything alone, you need the cooperation. So the BMC officials from the Municipality, they were operative. Then we went to all the medical colleges and we got not only paediatrics, neonatology, the obstetricians as well.
We got all of them together so we had a big team of trainers to train. We also went to the academic bodies IIPs, NNFs. So those in private practice also came on board. And so when everyone is together and going on we can do a much better job. Luckily from there it moved up, once we did that and we saw so many hospitals baby friendly, UNICEF said, “Can we go to the state?” I want to tell you when you know when you talk about going to the State, I remember this- I’ll never forget this story. I didn’t know anybody in Maharashtra state and they said, “The Directorate of Health Services is one this doctor Salunke.”
So I go into his office and I said,” Sir, this is what I think we should do for the state,” and the first thing they say whenever you talk about breastfeeding, he said, “but every baby in India is breastfed.” So of course I took out my data which I was carrying along with me. I said, “No, this is the data. You think they’re breastfeeding, but no, this is what finally happens.”
And he was convinced, and he said, “I’m going to have a meeting of all the civil surgeons in the hospitals and the Deans of the medical colleges in Maharashtra. You can come and address them.” I was only too happy.
There we went, we addressed them and you know what he had to say, this is what I remember about him, he said, “Now you’ve heard what has been told about breastfeeding formulas and bottles. I want you all to have a bottle breaking day. And not only break bottles but send me photographs.”
So that was a cooperation we got from them. And then of course, with our UNICEF funding, we went and covered the entire state, all the medical colleges, through the nurses association, the nurses colleges, through the government where the team, through the government, all district training, we went right down into all the districts and trained and you know at the end of it.
I think Maharashtra at that time had the maximum number of baby friendly hospitals. I learned so much from that programme, how to work with people, how to get the cooperation and what can be done if everybody is together.
I think these stories are so interesting because I’ve heard you say before also that you never had these grandiose plans and these big heroes and these big role models, you just always wanted to do something, you went ahead and did it, and the universe seems to have worked with you to make it become something larger than life and take on a life of its own. Because what happened with the breastfeeding movement, as we all know, is really something that changed the way infant survival was being looked at in India and the kind of impact it had.
So Sonalini, I didn’t answer the second part of your question about the milk bank, and I want to come back to that because, how do you do something quite different that has never happened before?
So when we wanted to, like I told you, that we wanted a safe, continuous supply of human milk and the only way to do it is a milk bank.
Now, how did I get this idea? It’s not that I dreamt of it. I saw it when I was in a Commonwealth, Senior Commonwealth Fellowship, I saw it in Oxford. There was a nurse going on a cycle collecting milk. She and her mother, actually, collecting milk, bringing it, storing it and giving it. So I said this is an idea. But nothing like this was heard about in India, forget about… . And then not only India, Mumbai and that also in the Municipal Corporation.
So when I came up with this idea, of course, first thought is no one will ever fund it, because where will they… they’re not willing to fund an incubator, didn’t have funds… . So the funding was out of the question. And the second one is how to convince the state to give us staff. When I talked about it, who gave me total support was the Head of the department, same Doctor Athavale who said do something about newborns. So he gave me the support. So when it came to milk banking, he said, “Of course, go ahead and do it.”
So then I said to get the source of funds. Also that taught me that you don’t have to be in an institution besides UNICEF, you can go to other funders. See you learn, as you live, you learn. So I went to the Taj group of hotels, met the person there and I said, “This is what I’m going to do.” And he of course was shocked. I said, “No, it’s possible. We need it if we want to save babies.”
And he said okay, but he also told me, “See, you’re in the Municipal Corporation, take funding, but we take it for three years because it will take time to convince.” I didn’t realise it would take, but really I just about made it.
So I got funding. And then of course getting space, equipment. The second thing, milk banks abroad are quite different because, where did they get milk? They got milk from donors. Donors came from homes where they expressed their milk hygienically, stored it in their fridge and they brought it home. And then they had this Pyrex bottles where they stored the milk and they autoclaved. Here and all my patients from the slum, Dharaavi where is the question of hygienically even expressing milk? No one had a fridge!
So we had to… . And where? We couldn’t think of Pyrex and all, so expensive, it’ll break. So I had to modify. When I started, that human milk bank had to modify, like I always do, to suit our country’s situation. So I said, “No, we won’t get milk from home. We’ll get it expressed in the hospital. We’ll get it when the mothers come for follow up.” We had a Lactation Management OPD. They came in, expressed the milk… .
So this was the plan. You know you change human milk to suit the country, the donors to suit… . Many of the criteria that we did was to suit our settings. The other thing was to convince the Municipal Corporation, oh my God. You know when people are not doctors to go to that office and tell people have a staff… . You know, they almost thought I was a lunatic! “Man, human milk? How can you give human milk from another (mother)?”
And, you know, sometimes, you know, God sort of descends and whispers in your ear and tells you what to do. I told that person in-charge, I said, “You’re giving from one species to another human being, and you don’t want it from one mother… .”
Even then he didn’t get convinced. Then I remembered I said, “You remember Krishna was wet nursed he didn’t have his mother’s milk…” So finally… but it took me up to three years to convince the authorities and they gave me… .
But you know when you talked about you know did you go around and talk about milk banks, you know Sonalini, for years there was no other milk bank. With great difficulty we started at KEM and JJ in Mumbai and people were not convinced. Neonatologists were not convinced. Then more and more data came saying the need for human milk to save sick preterms who needed even a few drops of that human milk… . So with more evidence, more and more interest.
Today, human milk banks have become a craze in India. Everywhere, if you see the newspaper, someone has opened. There are over 100 human milk banks. But it took over three decades for it to catch on. So I really started in ‘89 and today, of course, in the last maybe five to ten years, there are human milk banks all over the city, all over the country.
It’s a fascinating story because, as a concept for you to convince people and then for it to take root and then to come to where it is today. It’s been a long journey, that’s fascinating.
Talking about the late 80s and the early 90s, Doctor Fernandez, when you retired, I remember being called in for a meeting in a one-room tenement in Dharavi. And there was a bunch of doctors. You were there and a couple of your colleagues and you were brainstorming in that little room about how now is the time to work in the community and you’ve spent a lifetime working in a hospital, but now is the time to move to the community. And I think that is when SNEHA was born, right? I remember thinking, what’s with these doctors? They could be out there practising medicine, they’re sitting in this room trying to figure out how they can work in the community. Firstly, Dr Fernandez, nobody was talking about urban poor and urban health at that time. It was still rural health. And even when National Rural Health Mission (NRHM) came, it was National Rural Health Mission (NRHM), and Urban Health Mission (UHM) came much, much later. So what made you decide to work in the community and to step out of the institution?
I think the same one thought, Sonalini, was in my mind, “How do I save lives of babies?” I was feeling so good, with all the things that I had started at Sion hospital – mortality rates from 70, 60, 50, 40, they just kept dropping. And I was so happy, elated, saying that we are saving babies.
And again two thesis of my students, I want to know what happened to babies that asphyxiate, the babies who didn’t breathe at birth, and preterm babies when they don’t… . And I said let’s do a follow up and see what happens to those babies as they grow. So the students came back and from the OPD they said, “Madam, they are not coming back for follow up.” So I said, “So what if they’re not coming? We have the addresses. Let’s go to the slums and follow up, follow them up.”
And when they did go back to the slums, you know, they came back and said, “Many of those babies had died.” They died in the slums. Some of the babies were handicapped post-axphysia and all the things that happened to a preterm baby – blindness, paralysis, cerebral palsy. And at that time, the question I asked myself was, “Why are we saving these babies? Is it fair to send them back into those slums where they’re finding it difficult to live their lives and bring up normal babies and to struggle with these babies?” They spend so long in the hospital, come back and struggle.
So I said, “No. Sitting in this NICU, we are lost, we’re just doing one aspect, the final when they come sick and dying.” I said, “If we really need to save babies, we need to move out of intensive care areas, go into the place where they live, where the community with the families…. Bring about changes there so that they don’t reach the hospital, make sure that… .” So that’s when I I thought I’ll start working in the slums. But something even worse happened.
I was thinking of maternal newborn health all the time because the baby has to survive, so it was maternal. But at that time, a six week old baby was brought to Sion hospital, raped and because they couldn’t rape, they had cut the baby… six weeks! It was brought up at our mortality meeting and you can’t even get over something like this happening. And when that happened, I don’t know whether we finally found the rapist or what they did and what did the police do… . And because I didn’t even have the time to follow up what happened to this, I swore to God that when I retire I will work on violence against children and women.
And therefore when I said when I start working in the slums, it will be maternal and newborn health and it will also be violence against women and children. So the concept of starting to work in slums happened at that time. And you know how to work, what is an NGO, of course I have no idea at all.
But it so happened – I’m talking, I always keep talking and I was at a wedding and I was talking and one of my part-relative friend Neville Soans, he told me, we were in a group, and he said, “Armida is always talking about slums and working there.” He says, “I’m selling a house in Nashik and I’m going to give you the money, you start working in the slums.”
So this was a statement at a wedding and I smile and I forgot about it. But, tragically, the next morning I get the news that Neville was in his late 40s, not really old, but collapsed and he passed away. So it was really shocking. And after a few weeks, his wife Patricia, maybe weeks or a month or so, she comes to me with, cheque and all the money and she says, “Armida, I sold that house in Nashik and here’s the money.”
But that’s what I’m saying, that’s why I believe that God has a plan. She said, “Do you know, I was not in that group? I came in when Neville was making this statement. This was his last promise to you, and I have to follow it.”
Patricia Son had five children, the eldest was 16, the youngest was 5. And I said, “How are you going to support your family if you’re going to give the money? Plus, I’ve not left the hospital. I don’t know how to start.” She said, “Nothing doing, you have to do. It looked as though I was being told that I am facilitating it, God is telling me I’m facilitating it, so you need to work and therefore it… .”
I realised that I wanted to work, I was getting money even before I started and that’s how I started. Of course to think that with that little money, we start with one social worker and work in one slum, we’ve reached now from that to over seven states and more than 500 workers, it’s transformed.
After 25 years at Sion hospital, Dr Armida Fernandez retired as the Dean of the hospital and left to work at SNEHA, an NGO that she founded.
[ARCHIVAL AUDIO CLIP – SNEHA]
So Doctor Fernandez, could you tell us more about SNEHA? We did hear about how it began many decades ago, but it’s come such a long distance today. If you could share with us what are the different issues that it works on today? Why were these seen to be important? Also, were these issues in some way interconnected?
My first thought, I think for years had been, how could I help save the lives of newborn babies and therefore with the newborn babies, mothers. So when we started SNEHA, we moved into the community. But even as we started, we realised that we just can’t work with only communities. We would be trying to change behaviour, get mothers to seek healthcare and look after the babies, hygienic methods, exclusive breastfeeding, but finally when they are sick they needed to go to hospitals.
So we had to work simultaneously with both the communities and institutions. So this was a major thing, these two. And then like I said, even early on I realised that if we needed to convince people or even ourselves, if we are doing the right thing, it had to be evidence based. So there were times when we didn’t do the right thing and evidence showed that no, this is not what you need to do. So I think the three strongholds of SNEHA is we work in partnership with communities, we work with systems, and all that we do, all our programmes are evidence based.
Having said that, when we started it was the mother and child. So maternal newborn health. But we said that if the child really has to survive or the mother has to give birth to a child who has a good birth-weight, not a low birth-weight, then we couldn’t start with the mother, pregnant mother, we had to start much earlier. So we had to work with the adolescent girl. And if the adolescent girl had to be healthy, then she should have had (been) nutritionally well even in her childhood. So we realised we can’t look at one aspect and it had to be the whole life cycle of the woman.
And therefore SNEHA now works with the adolescent mother, the newborn, the child across the life cycle and to break the intergenerational gap of ill health. So if you want an IVF baby and all, we have to work towards it. At the same time we realise that, at all times, it could be as a child, it could be as a an adolescent, or older woman, violence had an integral role in the health of that – both physical health and mental health. And therefore across all these stages we would work with violence. So this was our main project and this is how we worked. So that’s what we did.
And when we said work with systems like for maternal newborn health, we worked with the Municipal Corporation in Mumbai city. They have all the free services across. When we talked about violence, we worked with the police and the legal health system, so we were working with systems. When we worked with nutrition, we worked with the ICDS which is the government. So all our partnerships have been with the systems as well.
I want to take up this point that you’ve just raised because I find it very interesting. Many nonprofits find it very, very challenging, to use a mild phrase, to work with the public systems. And I recall Doctor Fernandez, I sat in on a meeting, I think it was the Thane Municipal Corporation and it was a round table – there was the Municipal Commissioner, there were various bureaucrats, and there was SNEHA. And what SNEHA was sharing was being listened to with a great level of attention and respect. What I found in that room was a level of mutual respect and a kind of symbiotic relationship which I really haven’t seen between too many NGOs and government. And I remember the same in a police conference which SNEHA was facilitating on violence.
So what was it that made this relationship possible? Because it is fairly unusual, it’s not that common.
I think when we first started working and we already knew the weaknesses of the system because we came from a Municipal hospital. So we knew the weaknesses, and therefore we said when we worked, for example, with maternal newborn health, we realised that SNEHA actually didn’t do anything. We started a process of referral system across the Municipal hospitals because we realised that the even normal cases came to Level Three
and the complicated cases went to Level One and by the time they reached the hospital, the mother or the baby was at a very high risk. So we said we’ll start the system of referral.
Now what we did, and I think it’s important to learn, that our approach was very participatory. We were only a catalyst Sonalini, we actually didn’t do the work. For example, in the referral system we had the administrators and they looked at the gaps or the weaknesses of the system, what are the gaps they need to fill. So they looked at it, they found the solutions and then they put it into practice. Also the doctors and, we had a doctor group, we had a nurses group and at every level they were looking at what are the gaps.
What did SNEHA do? We made sure they met, we organised a meeting, recorded the minutes, we translated, and we made sure that what they discussed and said they would do, they would follow up. So really that participatory approach. And then we never took the credit, we congratulated the hospital for doing what they are doing because finally they were doing it. So I think what is important is, as NGOs when you say you know we as NGOs how do they respect it? Because they realise that we are not there to say that we have done something that… . They take the credit for whatever they’re doing. So once we did it in the Municipal Corporation, the Municipal Corporation of Mumbai realised we are doing a good job, systems were laid.
We also had, I forgot to tell you, we had a group of you know professionals in the field – neonatologists who made the protocols for Levels One, Two, Three – that was put into place. And once that was done the Municipal Corporation was really happy with the work done, the word news spread. So the seven Municipal Corporations around Mumbai came to us and said can you do this for our corporation as well. And I think one of the meetings that you attended in Thane, they had invited us to come.
The second is we got people from the Municipal Corporation to come from Mumbai Municipal Corporation to talk to them – what happened, how it was done. And I think then comes the acceptance. Thet they mean what they’re doing, they do a good job, and things are put into place. And finally, Municipal Corporation has taken over what we are doing. So we need not be there anymore. So I think that’s what we learnt in working with systems.
And I think what we saw in Mumbai was how that translated into something quite amazing on the ground during COVID. I think the Dharavi model, where SNEHA, where the Municipal Corporation partnered with NGOs on the ground, especially with SNEHA. And by then I think SNEHA had this major force of volunteers drawn from Dharavi. So this three way partnership which did some really amazing work in terms of compliance with the protocols for COVID. I mean I remember the high rises and the upper middle class and middle class of Mumbai, they weren’t following compliant behaviour. But the NGOs working, the SNEHA outreach and volunteers and what they did with the Municipal Corporation in Dharavi, correct me if I’m wrong, but this has been documented and went on to be seen as a best practise in COVID management across the world-
You need to give credit to the DMC who was there-
Yeah, Kiran Dighavkar. You know what he did and that’s the same thing I told you when we were doing breastfeeding. He he said, “We can’t do it alone,” the Municipal Corporation. So he got everybody to participate. So it was the Municipal Corporation, the government, the NGOs and the community – so everybody participated. So I think that was one reason. But what was the role of SNEHA, and SNEHA has a huge army of volunteers, we say we have almost 500 workers, but we have almost 700 volunteers.
And this is extremely important because finally when we are looking at sustainability, it is the volunteers in the communities that will take over. And these volunteers and some of our community health workers were actually living in the slums of Dharavi. So we had a large workforce of volunteers living in Dharavi.
So because of the technology and although we could not move around, no one could move around, we could get in touch with all the volunteers, we could get in touch with the community, community organisers within the slums. And the role of each NGO was identified. And ours was distribution of whatever food that we had to give, fruits and vegetables and all. I think that was an excellent model and many people can learn from it because of the way it was planned and done.
From a communication lens, actually, I think what worked was that level of trust that you had already established with the community, because without that trust, I mean getting compliant behaviour… . We’ve seen it in polio or in HIV, people were willing to go that extra mile because they realised that SNEHA understands them, I think and SNEHA was there to tell them what is doable while the rest of the world was saying don’t do, don’t do, don’t do. I remember you had a Gharwali Diwali. I mean, that was incredible when everyone was telling Mumbaikars, “Stay at home, there’s COVID out there, don’t step out.” You said, “Celebrate at home.” It was a different tone, I think. I think that that’s the little things. I don’t know, I mean today when I look at SNEHA and I see you’re open to taking the best from everywhere, whether it’s technology or research. The transition that you made in terms of taking the best from everywhere, you were open to taking someone from the private sector, you brought leadership into a not-for-profit from a sector that is not associated with not-for-profits. How did that transition happen?
People whenever they start an NGO, and whatever they start, they say I have a dream, I have a vision and they plan it so well and then they go forward. Unfortunately, my life has been so different. The dream, vision and all, it has been very small. Something really affected me. I felt strongly about it and had to do something about it. And you know I could do it with the best possible way I knew.
So what were my strengths really? I think my one strength is strength that my heart feels strongly. The second is I need to do something and I want to do it and make sure it happens. So that’s the second thing. I’m a dreamer in many ways, I’m a teacher. But when you talk of systems and policies, what happens and what is happening in SNEHA today I’m not that type of a person and when I was… . There were 10 years 12 years down into SNEHA was doing all this work, two things happened. One is we were doing a fairly good job but not the best. The second is my daughter, you know, same one who had exchanged transfusion, this was the second bout of, you have got into cancer and she was very ill and I was finding it difficult to continue, you know, working with as much vigour.
So at that time, and I give a credit to the people who were on the board, who felt very strongly that we must do something about… we need to get a full time person who you know who will work. The second set of people I want to have Dasra. Dasra had got a nutrition project, you know, they have different programmes and we went into our nutrition project and they said after the first meeting they said, “No, we need a full time CEO. We have to continue to fund it.” And therefore I’m saying, “Lord, where will I get the full time?” Because there are lots of people who are qualified but we were looking at someone who feels strongly about what they are doing. It’s not the background and what degrees they have, but they have to feel strongly about it. Secondly, the person has to have the right values, it’s so important to run and organise, and third is the skills. Bring in the skills that you have to run an organisation, run the programmes.
One of our volunteers, Vanessa D’Souza, she worked for Citibank, having a big post in Citibank and she’d worked there for 20 years and she had resigned from Citibank. And when she was there, she came and volunteered. So she had been volunteering with me for six months, but somehow I got the feel, “My God, this girl is very good.” I remember, you know, normally when we went for donations and all to some, I used to make the presentation. I think once I couldn’t, I said, “Vanessa can you do it?” She did such a good presentation, I said in future I better not talk Vanessa’s the one who should go and do the presentation. So I realised she had the ability, but she was not sure. But when it came to the crunch, my daughter was really ill, I just couldn’t do it. And I told her, “Vanessa?” She said, “I don’t know whether this is what I want to do,” and I said, “at least try it out for some time.” And then Vanessa said yes.
But I think her coming from that Corporate background and also the person she is you know not just anyway lots of people work for the… made all the difference to SNEHA. She got in people from technology, she brought in people from communication, she brought in people that you know changed the face of SNEHA. And if you say policies, vision and systems and whatever you… this is after she came. She really did an excellent job and I give her credit.
I would also add, Vanessa did this part of it, but a colleague of mine who was with me – Shanti Pantvaidya, she took over the whole medical aspect – Vanessa is not a doctor – so she could do and she looks at every small comma and all, she has a different mind. So she looked after all the programmes. And the third blessing was for the finance. You know today you need the right finance person and there’s Archana. So the three of them changed SNEHA.
I want to take up something that if you’re comfortable talking about, you mentioned that Romila became very unwell at one point in time. And we know the pain that you and Doctor Rui went through. Romila suffered for a long time, and her passing led you to begin the Palliative Care Organisation – the component of SNEHA working in palliative care, which much later with your vision today has become an entire network in Mumbai. It has grown from one organisation to so many.
Would you like to tell us a little bit about palliative care? I mean you had done so much in promotive and preventive and treatment and rehabilitative. It’s almost like life has come full circle in the entire spectrum of healthcare and today you’re passionate about palliative care. I mean both personally and professionally, that is what takes your energy today. Would you like to talk a bit about that journey?
I think the lesson one has to learn, like I said, you go through a lot of suffering in life. I’ve seen many people suffer, mothers suffer. And so I know that suffering comes to everyone. So even we in our lives have to suffer. And I think I went through that suffering of my daughter.
And I finally lost her about 10 years ago. And at that time, I hadn’t heard really about palliative care. I knew, of course here we have Shanti Avedna, and it was a hospice for the dying. So you send someone who’s dying and they will die. But that’s about all I knew, I didn’t know the whole spectrum of palliative care, where palliative care meant relief of suffering, not just physical suffering, where you give pain relievers, but it is about mental suffering, social suffering, spiritual. And it’s not just the persons who has the disease, but it is the caregivers. I realised it with Romailla at that time, but when it was us, I didn’t know who was there to support who would do that.
And after Romilla passed away and someone told me, why don’t you go and meet and talk to Doctor Mary Anne, who is doing palliative care. And I did that. Then she gave me the whole spectrum. She said, “Even at home, your daughter was at home, but people could have come to your house and helped her and helped you and her husband and my husband Rui who was suffering so much,” and I said, “oh my God, I wish I knew it.”
And the moment I heard that, I said, “I, my husband, as doctors didn’t know about it. What about the rest of the world?” And probably I always feel something happens in my life that tells me I’ve got to do something about it. I said, “I must make sure that people know about palliative care and I will start it in Romilla’s name.”
And so I started the Romilla Palliative Care and Outpatient and then Home Care. But the beauty is, we reach out Sonalini for example and I realise that palliative care is not only for cancer patients. Palliative care is for dementia, for parkinsons, for stroke, for chronic obstructive lung, heart disease. So this is a huge spectrum and leave aside the patient, the caregivers are suffering and there’s a huge gap in the hospitals in the community – hospitals don’t accept palliative care, they don’t admit palliative care patients. So this was something had to be done about it and that’s why I started it and I started it in a small way but, like you said the universe comes down to help you do whatever you are doing, and so we then we had teams that could go home.
We had the doctor, nurse, counsellor, went to different parts, did home care, made sure that these patients that we were dealing with got palliative care. Our centre, you must see our centre, you’ve seen it Sonalini? It’s a cheerful centre. We have a day for dementia, day for Parkinson’s, day for cancer, we have a day for senior citizens who suffered so much during COVID time. It’s a cheerful place for them and you can see them, they come smiling, actually, and go out smiling. So I think that made all the difference.
And like I said, you know, whenever I start something, you can’t do it alone. I started a network, when I was doing breastfeeding, I started a Mumbai breastfeeding network that is still functioning today and doing a tremendous job. So I said we can’t do it alone and therefore I said let me call other people who are working in small ways in palliative care together, and we formed a group. Now this group is larger and larger, you’re very much a part of the group, and we go across and we are trying to change, we’re trying to change hospital, doctors who don’t believe in palliative care.
Doctors think they must cure and if they can’t cure, they can’t. So we are talking to doctors, nurses, we’re trying to change the community. It’ll take time, but it’ll happen. What we’ve started in all our academic units, for example in paediatrics, we have training courses in palliative care that never existed. So we are trying to push palliative care. And I think there was a need, I think I lost my daughter for a reason, I think I got some sort of healing because of what we are doing for other patients like her.
I think this is a really touching story. I think what’s also very significant is, because I remember the early days when you tried to start the network, everyone was busy working in their own little silos and doing their own little thing, and the initial few meetings there was this level of cynicism with people saying, look why are we meeting? We’re all so busy with our own work. This network won’t take off. And there were many amongst us who felt that, why are we meeting once a month, but today, I mean thanks to that network, the cross referrals and also they share strength in numbers, the kind of advocacy that the network can do as a group when it comes to doctors or the government. I mean we’ve seen how those numbers matter and how networking matters. And I think for me that was a real learning. You don’t give up, I mean the first three or four meetings, we all said, “Look, the numbers are dwindling, there are only 5 today, they’re only four next time.” Today there are 25. That network consists of more than 70 plus and at least 25-30 come for every meeting. I mean I had to swallow my own… . I kept thinking that will this work? Incredible. I think nobody knew what palliative care was, and we’re actually getting that language out there now it’s… .
The second thing, you know Sonali, we had a hospice much before the rest of the country – Shanti Avedana, but it is only for cancer patients. Now you know Sukoon Nilaya, Doctor Eric Borges at King George V Memorial, it’s a palliative care for non-cancer patients, and as you know in our network more and more people are starting such centres and hospitals for non-cancer patients as well. So really it is spreading. I think someone above makes sure things happen. He just gives you the push, says, “Start and I’ll be there with you.”
That’s really lovely because I think the universe has worked with you, and as you said, someone above has really supported all these wonderful, heartwarming concepts, ideas, plans, and just your life mission. I mean, if I were to ask you what is it today that really gives you a sense of joy and meaning and purpose, what is it today that keeps you going? I mean, you’ve seen a lot, it’s not been easy. What keeps you going today? And what is it that you… what’s the vision that you have for tomorrow? For palliative care, for SNEHA, for all of us.
I think I’ll start with the vision first Sonalini, I think what is the vision I have for SNEHA? We’re going to be almost 25 years, next year. I think we’ve been here for a long time and we’ve always talked about sustainability. We’ve done a whole lot of research projects and all our projects. We have documentation, we know what we’re doing, what works and what doesn’t. So it is time to start a centre. I think evidence based work at the extent that we have done in SNEHA on maternal newborn health, on nutrition, on violence it’s a huge amount, so it is time for us to start that centre here in Mumbai.
And not do as many programmes, we have cut down the programmes. Only try out newer things that create more evidence on how you can work in urban slums. We’ve also come to a level where we can hand over, we can hand over to the system. Some of them, I would say to some extent, maternal newborn health and you know and a little bit of nutrition, because we’ve had these large projects on nutrition in Dharavi, 2000 babies, where we’ve reduced the malnutrition stunting by 6%, huge numbers. And the whole, it is evidence based, we have data to show that. So now we are handing it over to the ICDS on one hand, we are slowly withdrawing our staff and also handing to the community.
Certain programmes like violence, it’s not time, we still can’t, we are working with police, we are training with police, we are looking after the one-stop centre. So it will take time, but there will be a time. Even adolescent health, it’s the newest programme we need to continue. So I think this is what I think would happen to our programmes in SNEHA.
Even palliative care, there’ll be a time where we won’t have to do palliative care because systems will have it taken up. I’m trying to push palliative care, so all the hospitals will have a palliative care OPD, all the hospitals will have a palliative care unit-
-the government has its community health workers and they also will be doing palliative care. So the National Urban NHS, it’s already started palliative care, they could take over palliative care. So I think that should be the future of what SNEHA or all the things that we are doing.
And the other question is what is it that gives me joy and what is it that keeps me going? I’ve been walking and you know I walk in the morning and I was taking my walk and I reached the end of the road and suddenly I see the sun rising and there was a little bit of a grey cloud and below it, this red sun. You know, my heart, I was so happy to see that sunrise.
I think nature gives me a lot of joy. I love to see the sunset, sunrise. I love trees, I love flowering trees, I love you know, plants and flowers, all this.
Like I said earlier, Sonalini, I’ve been blessed with love from the time I’ve been born. My family, my parents, my family, my friends. Wherever that my wonderful husband, when I recently lost my daughter, I was enveloped with love. And I think, you know when you are loved, you need to give that love, it sort of flows. You’ve got to give that love back. And I think what keeps me going is that love.
That if I see someone suffering, if I see someone in pain, whatever, God has a purpose for each one of us. He brought us into this life because he has a purpose and I need to follow, I have to keep working till I can. So when I have limbs and I can talk and walk, I will go around and do what makes me happy. And I think even when I can’t walk, I’m just young, 80, of course when I can’t walk, love is something you can give in any place you are or wherever it is. I think, I think that’s what I live for actually, that that’s what keeps me going.
Really have no words to say, Doctor Fernandez. All I can say is that we’ve been touched by that love. Many of us who have known you well are so privileged and so blessed to have been touched by that love, we have felt it. We are hugely blessed and grateful for having been so privileged as to have known you. I think it’s really, I’m too emotional to say much more except for a huge, big thank you for spending so much time talking and opening up and sharing your stories and opening your heart to us. It’s really been wonderful, thank you very much for today.
Thank you, Sonalini.
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