Being stuck in bed for the second time in a month with gastroenteritis (who knew that packaged almonds could wreck such havoc?), and all 3 kids at school, it’s the perfect time to finally write the story of Nane. There is huge reluctance to write this story because writing requires thought, and to think about the plight of this child is overwhelming and makes my heart physically hurt. But his story has to be told so that no matter what happens, someone knows he was here and how important he is.

The first time we (every time I write ‘we’ I mean Links for Education, AKA Urvi and I) met Nane was a month and a half ago in Ambedkar Nagar, on a day we went to the anganwadi (government preschool) with volunteers to teach yoga and read books to the preschool kids. Although he is 5, he looked like a toddler with a large head, blue-tinged lips, and stick skinny arms and legs. He was carried in by his mother, Jyoti because he cannot walk. He also cannot speak more than a couple of words in Kannada. It was immediately clear, even before we knew what he suffered from, that he was very, very sick. When I held Nane while Jyoti attended to her 2 year old and 5 month old daughters, his heart pounded in his narrow ribcage, and his breaths were shallow and hard to come by. I was afraid of holding him too tight. His dark blue mouth was open as he gulped for air, and as he tilted his head up and searched my face, his round, dark brown eyes locked on mine. In that moment it was impossible not to feel the pain this child was in. His mom asked us to help him, so the tears had to be held in and the wave of uncertainty and fear had to be pushed down as we tried to figure out how to help. A plan. We needed a plan.

This story is so convoluted, complicated and filled with so many lies and numerous people’s perspectives that it is daunting, and more than a little depressing to write. And I don’t promise that it’s the truth, the whole truth and nothing but the truth. It’s told from my perspective with all the background, culture, race, privilege, baggage, etc. that I bring to it. It’s the truth from my point-of-view, but may not match every other character’s in this story.

Like all the projects I have gotten involved in in Bangalore, this one is so much more complex than what it looks like on the surface. Trying to do good work of any kind here is so beyond difficult. An example, we collected that money from our yard sale fundraiser and generous friends and family back home to rebuild 14 houses (which I wrote about in a previous post), which fell down in a recent flood. It’s been over 2 months and we still have not given away this money. Because we have limited money, we will buy the materials which the homeowners can then use to rebuild their homes themselves. Apparently, most people in this community know how to do this. But even if only one wall fell down, they want enough materials to build an entirely new house. And everyone is fighting over who will get the materials first, and who will get more than others. And there’s the issue of this possibly being defense land so are we really even allowed to build on it? Even though Baghya says she has paperwork saying the land was given to the community, who knows? Currently, we are in the process of trying to find a contractor who will honestly tell us how many cement bricks and sand each home will need to rebuild it. Oh, and one who will consult for free. I get it, I do. People have been ignored and kicked down for so long by those that are supposed to help them, that they want to get what they can get at the expense of everyone else. It’s just how it is. And even if you manage to do what you set out to do, it’s only a drop in the bucket of what needs to be done. It’s enough to make me want to crawl back under my covers.

Back to Nane. He had been recently diagnosed with tetralogy of Fallot. Babies born with tetralogy of Fallot are called ‘blue babies’ because their lips and skin are tinged blue due to low oxygenation of blood. Bear with this medical stuff because I think it’s important in understanding Nane’s condition and his family’s response to it, and I will use the most user-friendly medical source of information around, Wikipedia to try to explain:

“Untreated, tetralogy of Fallot rapidly results in progressive right ventricular hypertrophy due to the increased resistance caused by narrowing of the pulmonary trunk. This progresses to heart failure which begins in the right ventricle and often leads to left heart failure and dilated cardiomyopathy. Mortality rate depends on the severity of the tetralogy of Fallot. If left untreated, TOF carries a 35% mortality rate in the first year of life, and a 50% mortality rate in the first three years of life. Untreated TOF also causes delayed growth and development, including delayed puberty.

“Patients who have undergone total surgical repair of tetralogy of Fallot have improved hemodynamics and often have good to excellent cardiac function after the operation with some to no exercise intolerance (New York Heart Association Class I-II). Surgical success and long-term outcome greatly depend on the particular anatomy of the patient and the surgeon’s skill and experience with this type of repair.”

Bottom line if you skipped all that medical stuff, in the US and much of the world, babies with this congenital heart condition would be operated on as infants, and the surgery has a very good success and recovery rate. Nane was 5 when his condition was first addressed by his parents. He’s already 2 years older than when half of babies with this condition die.

Nane had been diagnosed at a local hospital a few days before we met him. He was admitted to the ICU, and the doctors at that hospital had immediately referred him to a well-respected heart hospital for immediate heart surgery. However, the family didn’t go. His mother told us that they did not have enough money to pay for the surgery. We told her we would help, although we had no idea how much a heart surgery would cost in India. I asked Jyoti how much money she had towards the procedure, and she said zero. After a quick chat, Urvi and I decided we were prepared to spend the money we had raised for flood relief on Nane’s surgery instead. At that point, Baghya, the anganwadi teacher extraordinaire, jumped in to say that Nane’s parents had been given 15,000 INR from a neighbor for the surgery. When questioned about that, Jyoti said that she had spent most of that money already, and only had 8000 INR left. Baghya didn’t believe her. Baghya also told us that because of a government scheme, the family has been given a BPL card, which would allow the surgery itself to be free, although there would be costs associated with miscellaneous medical tests, blood work, and possibly bribes so that their son would be looked after well. We were confused as to why Nane hadn’t had the surgery at this point already if it was mostly free, but maybe we were missing something in translation. It turns out there there was, as there always is, more to the story than what was visible on the surface.

Although I wanted to drive immediately to the hospital right there and then, Jyoti said that she would check with her husband who is only home on Sundays, and let us know if it was okay to take Nane for surgery. Her husband could not be reached on the phone, so she asked her sister instead. She agreed, and on September 11th we picked up Jyoti, Nane and his cousin Manny and drove them to Sri Jayadeva Institute of Cardiology. This was the most crowded hospital I have ever seen ever. I was definitely the only non-Indian, and it looked more like a concert or an organized riot than a hospital. It is considered one of the better hospitals probably because it is partially privately funded, and it’s open to everyone, of any faith. Although it was crowded and looked chaotic to me, the staff and doctors seemed competent and experienced.

Jyoti was told in no uncertain terms by the admitting doctor that with the surgery there was a 5% chance that he wouldn’t make it through, but without the surgery he was sure to die. She agreed to admit him, and with the help of Vasanthi, my nanny extraordinaire who speaks the local language, the admittance process was handled. Nane was the 25th child in line for emergency heart surgery, and was kept in the ICU on an IV and given oxygen at regular intervals. Jyoti was concerned about her children at home, and so Baghya arranged for a friend of the family to watch Nane’s 2 sisters. Urvi and I agreed to pay for childcare, even though Baghya and Vastanthi were up in arms about Jyoti’s family not helping her for free when they are comparatively well-off (all have jobs and homes with floors and roofs). A few days later, Jyoti’s husband arrived at the hospital and the family discharged themselves. When we called to check on the family who we thought were in the hospital, Jyoti told us that the doctor said that Nane will never be better, and so they choose to take him home. She said that she has 2 other children at home to look after, and if Nane dies it is God’s will. Urvi and I called the doctor to verify this information, and she said that this is not what she told the family. In contrast, she said there was a very good chance that Nane would be healthy after the surgery and with the right amount of physical therapy, which we were willing to help arrange, he would be able to develop normally.

We have come to find out that Jyoti is not an honest woman. Although I have only met her husband once, I am guessing he isn’t either. Most days it seems that every single thing she says is a lie. Throughout the month and a half we have known her, she has probably lied to us more than she hasn’t. The lies she has told us as well as ProVision Asia, the NGO we called in to help are the following:

-The doctors said Nane will die if he has the surgery.

-I will have the surgery after I get 1 lak (100,000 rupees).

-My husband caused a traffic accident and needs 1 lak to pay the other driver.

-My husband was in an accident and injured his head and leg and needs money.

-I need money for the surgery (which was free).

-We spent all the money the neighbors gave us for the surgery.

-My husband beats me and the kids.

-If you pay for childcare for my other kids, I will get the surgery.

-I will call you when my husband comes back home so you can talk to him about the surgery.

-I will get the surgery done.

Anyone who has helped us interact with this family has told us not to trust Jyoti—Thamil and Vastanthi, my house helpers and translators, and Baghya. Although we, time after time, gave Jyoti, an overwhelmed mom with 3 children 5 and under, 2 of which have developmental delays and serious medical conditions, whose husband is an alcoholic and works in another city and is only home on Sundays, the benefit of the doubt. However, it became clear that she is using her son’s illness to try to collect money. Even with this knowledge, it’s not my place to judge her or her family. I can only imagine that being poor in a culture that perpetuates poverty and lack of educational opportunities, whose government is beyond corrupt and gets rich on the backs of those who need help the most, she feels she’s doing the best for her family. But all that said, she really pisses me off.

Links for Education visiting Nane at his home.

Nane with his new toy to help with fine motor skills.

Counting in the sun with garlic.

We visit Nane at least once a week, and although we don’t know it’s not enough, we bring him and his sisters toys and treats. He loves books, especially ones with animal sounds. We take him outside on walks. The neighbors think we are doctors, and seem confused as to why we are interested in helping Nane. I ask his mom about the surgery only once in awhile, but try not to harass her about it. I don’t want to make things harder. After one such visit, Jyoti started crying and said that she would have the surgery. When I called the next day to ask when we should pick them up to take them to the hospital, she had changed her mind again. Typically, when we leave our visits, I put Nane down on the couch, he holds out his arms to me, and I pick him up again. I don’t want to leave him. Every time we visit we have to ask Jyoti to bring down the toys from the top of the shelf that we have brought on previous visits. They are never on the floor where he can reach them. On two visits she has asked me to take Nane, do the surgery, and bring him back. She has also asked me to take him to my house. I repeatedly told her that she is Nane’s mom and he needs her. I have been advised by Baghya that if anything goes wrong with the surgery, I will be blamed. And Dan will not allow me to take Nane home. I don’t even know if what she’s asking is legal.

So what’s the plan? What do we do now? As a privileged American who is used a culture in which everyone gets on board to help each other, especially when kids are involved (I am not including Trump and his deportation plans for dreamers in this) I don’t want to give up. I need to make this okay. But it’s not in my hands, and I need to let go. I am leaving things in the hands of the experts—God and ProVision Asia. I am stuck and don’t know what else can be done. I have asked ProVision to figure out if there is an organization who can take legal custody if the parents want to give it and do the surgery, and then we can figure out an adoption plan, if that’s what the parents want. The good news is that last week ProVision said that Nane’s mom agreed to have the surgery in November. So for today, we are hopeful, but who knows what she will say tomorrow. Please pray for my friend.