…It was an incredible honor today to have Squalor to Scholar featured front and center in the Mayo Clinic newsletter. For those readers unfamiliar with me personally, I joined the M.D. Class of 2017 here at Mayo Medical School in July 2013. Since then, I have overseen Squalor to Scholar from Rochester, Minnesota, and feel blessed to have tremendously supportive and compassionate people supporting me at Mayo Clinic, back home, around the world, and especially in India. Read the full article here: http://intheloop.mayoclinic.org/discussion/from-squalor-to-scholar.
…Over the past three weeks, we’ve registered and vetted more than 150 children and their families, visited and evaluated 13 local schools, conducted a half dozen women empowerment seminars, organized and enabled an upcoming surgery for Prianka, prepared our students for their first final exams, and tried to win a $5,000 voting competition at http://www.volunteerhq.org/john-schupbach.html (which we are unfortunately currently losing by about 400 votes…please help!).
Here are some of my favorite photographs from the past few days:
–Instructions are written in Hindi with chalk on a wooden door in the slum. We rely on scattered literate parents to convey these messages by word of mouth. We can reach about 60% of the slum’s residents in 24 hours this way.
–Prianka had a large abscess drained from her face this week. She is being treated with antibiotics. She will go home while her treatment continues and return to Delhi in 4 weeks for another surgery to remove residual tumor shown on a recent CT scan. Thanks Mom and Dad for funding Prianka’s care!
We’re working hard here…very hard. Please don’t forget to vote at http://www.volunteerhq.org/john-schupbach.html and have your friends and family vote too. If each person reading this blog voted, we would win!
More good news: If your fingers are tired like mine from typing johnschupbach.wordpress.com, worry no more. This blog can now be accessed by simply visiting http://johnschupbach.org!
…Without giving away too much too soon, Squalor to Scholar will soon be surpassing a momentous milestone. Plans are well underway with multiple schools that will allow us to surpass the century mark and bring the total number of our students to 116! As you know, these children are viewed as inferior, less capable, and sometimes even unworthy of a world-class education. It is our intention, however, to prove otherwise. In less than a year, our 21 original students have proven to themselves and the world that, indeed, they are worth it.
Approximately 200 million people in India are of the Scheduled (aka Untouchable, Dalit, or Shudra) caste that I mentioned in the previous post. We will soon be supporting 0.00005% of this often ignored population! Sure, that’s a small percentage but it is an undertaking that is sustainable, effective, and inspirational. As my father would say, the camel’s nose is in the tent. We will spring from here to tackle the educational and public health challenges of India on a much more macro level while remaining fully aware of the needs and issues of the people our work will target.
Our pursuit here, however, has been and will be focused on quality, not quantity. These children are more than numbers or statistics; they are breathing, vivacious human beings who not only yearn for knowledge but have the potential to teach us about ourselves.
All in all, the 116 children who will soon be under our care will receive every resource necessary to excel in their top-tier schools, graduate from 12th standard (the equivalent of high school), and attend college or vocational school. Over the next 12-14 years of their primary and secondary educations, our students will, combined, rack up nearly 2,500,000 hours of classroom learning! That’s the equivalent of more than 285 years!
I was walking and laughing with our current students the other day when the boys started energetically impersonating superheroes. They acted like they were shooting webs from their wrists, simulating roundhouse kicks, and flying as fast as possible down the street. I joined in as Ironman and pretended to fire up the rocket engines in my boots and gloves. Ajeet ran over to me and, quite seriously, said, “John Bhaiya…you…are…superhero!” I asked, “Which one? Spiderman? Superman? Batman? Ironman?…” He stopped walking and contemplated with his hand on his chin and eyes looking toward the sky. He then responded with a big smile on his face, “No…you…are…Johnman!”
The true heroes here, however, are our talented students, their perseverant families, and, of course, the generous sponsors and donors who make all of this possible! Just think…this time last year, we still did not have a single student enrolled in school. Within the next couple of weeks, we will surpass 100!
Last night, a close friend of mine from home was on CNBC providing market analysis after the closing bell. I watched the video of it tonight online. There he was in a suit and tie, looking great at age 25, making his predictions as a burgeoning expert in the field. I told my fellow volunteers who jokingly noted, “And look at you, sitting inside a mosquito net next to a slum wearing a ski hat to stay warm!”
I laughed at the irony. However, there is nowhere I would rather be (ok…I lied…a hot shower at home and some of Mom’s lasagne would be pretty stellar right now). However, from this mosquito net, I can trade stocks, follow world news, promote human rights, and conduct research on local and international levels. I can bring thousands of people around the world together and shine light on problems that are overlooked even by those who live right next to them. Welcome to the 21st century!
One of the first questions I am often asked about Squalor to Scholar is, “How do you choose the students?” To me, this is the hardest part of our job. Not a day goes by when a mother or child does not beg me for admission into a school. Many criteria go into each selection and it is difficult to convey why we can help some people and not others. It’s one thing to deny someone money or food here because that individual will, sooner or later, likely obtain what they need. That’s an instinct of survival. However, education is not an immediate necessity. Among the “to-do list” of the poor in India, education usually ranks pretty low, somewhere near long term personal health.
Over the past year here, however, we have brought the topic of education to the forefront of every parent’s mind. That, in and of itself, is a victory.
Three days ago, we printed out formal applications containing our important criteria and sat down unannounced in the slum at 9:30am. We planned on registering just a few children. The news spread like wildfire. Members of our team filled out applications continuously for the next 11 hours!
Due to such an overwhelming response from the community, we’ve begun creating a database of all eligible slum children ages 2-10 so that we have a permanent record of their biographic and family information. In three days, we’ve processed more than 200 applications. Each application takes considerable time and effort, as nearly every parent in the slums is illiterate and a member of our team must fill out the entire form.
Luckily for us, volunteer Mira Patel speaks Hindi! She has been an incredible addition to our team and has certainly boosted productivity. Mira, Mamta, and Mithlesh do all of the speaking and documenting to assist families.
Bethea then evaluates the students individually and attempts to determine their basic knowledge, interactivity, estimated potential, current abilities, and degree of family support. Faith and I then obtain their photographs for our ability to recall, find, and identify the children later.
Lucky might just turn out to have the perfect name! We’ll let you know in a couple of weeks where he ends up.
Our 15 newest students are thriving in the classroom and impressing even the sisters. These are some recent photos of them leaving school this week. Their pristine new uniforms are currently being made.
–Anjali (the third one on the bicycle)–
–Sadna and Raj Nandani in the back of a cycle wagon–
Last night, Prianka returned from Bihar to re-visit her surgeon in Delhi. She had a smile on her face and tears in her eyes when she saw me. Her benign tumor has continued to grow despite her previous surgery. She was admitted to the hospital today and will have another highly invasive surgery tomorrow morning. She’s my superhero tonight. Her surgeon will be her superhero tomorrow. Please keep her and her loving father in your thoughts and prayers.
To all those who have supported us this year and made the educations of 116 children and surgeries like Prianka’s possible, thank you!
…It’s a rainy, gloomy day here in Faridabad. The streets are flooded and the slum is a sea of thick mud and cow dung. For the first time in more than a month, I am the only foreigner living in Mamta’s home. It is eerily peaceful for India. The ever-present sounds of chanting salesmen, children shouting, impatient drivers honking, and sputtering engines billowing clouds of smoke are nothing but memories of sunnier days. All that I hear are the patter of rain, the distant pounding of nearby metal factories, and the faint call to prayer from a faraway minaret. The air, for once, is fresh. The usual airborne industrial debris seems to have vanished. The smoke has cleared. The dust has been beaten to the ground by drops of water. Taking deep breaths and being able to listen to my own thoughts have never seemed like the luxuries they are now.
Life among the slums here is tiring. Trying to make a difference is exhausting. Throw in a little ‘Delhi Belly,’ a common cold, and some water scarcity and it would be tough for anyone not to miss the comforts of home.
But, then I go outside. Even though I sleep on a wooden plank, wash my clothes in a bucket, and use a cup to rinse my body in a candle-lit bathroom, I realize that what is important in life is not what we have but what we are able to do with what we have.
I have the ability to read and write, I was born free and equal, and I am loved by a family that would move heaven and Earth to ensure my health and safety. I’m set. Much should be and is expected of me. The children and young adults here, however, can’t read or write, they are neither free nor equal, and their families can hardly afford to put food on a table they don’t even have. Despite living at the bottom of what will soon be the most populated civilization in history, however, the children here are among the happiest I have ever met. They exude hope even when others have lost it. They are skin and bones but tough as nails. They act as though they have everything going for them even when everything is actually going against them.
The slum’s residents have every right to be angry at the world. Throughout their lives, they have been treated as inferior 4th class citizens. They perform back-breaking, unhealthy, and often demeaning work without ever second-guessing their status. They and their ancestors have been denied healthcare, education, and opportunity for so long that even when they are offered such services they do not trust or understand them. When I take patients and their families to the hospitals, some doctors scold the parents for waiting so long and having to have a foreigner bring them in for treatment. However, are they really the ones to blame? I don’t think so.
Living in India is no longer the novelty it once was to me. Being 8,000 miles from home now seems pretty normal. I no longer flinch when I round a corner to meet a massive bull staring into my eyes from three feet away. I no longer want to fumigate myself or my clothing after spending the day in a slum.
The hardest part about my return to India has not been adapting to the culture but adapting to the scale of India’s problems and the widespread lack of regard for them. Education of the poor here is a disaster and I believe it is the central root of India’s vast poverty, overpopulation, and massive public health dilemmas. To make matters worse, the caste system cripples altruism and any attempts to promote equality. Some of the high-caste locals who only know the basics of our work think that our impoverished children from the slums cannot perform to the same standards as “normal” students. In true Indian honesty, they tell me directly that I am “wasting my time.” All someone needs to do is meet one of our students to know that this is not true.
How can you think I am wasting my time if you have never met our students? How can you understand their problems if you never go to their communities? How can you stand to watch them suffer and even die without wanting to find a solution?
I experienced the most egregious and bewildering example of the caste system last year in, of all places, church. It was my last Sunday mass with the sisters before returning home and I planned a special, surprise event.
During mass, I had all of the pediatric patients I had been caring for (and their families) come meet me at the church entrance. When the parish priest finished his sermon, he signaled me to come address the congregation (all of whom speak perfect English). I walked down the aisle from the back of the church with six severely deformed children and their parents following me. We all turned around and faced the congregation. I took the podium and introduced each of the children, their medical conditions, what I had done for each of them to date, and when their operations and/or treatments were scheduled. I then made one simple request for help transporting the children to and from the hospitals and physicians that would cure them. I thanked the congregation in advance for their generous help and for their hospitality during the three months I had attended their church.
Once the service ended, I stood at the back as everyone passed to shake my hand, hug me, and thank me for my work here. They then passed by the children, entered their cars, and drove away. No one ever said a single word about helping these unfortunate and astonishing children. Even when I brought devout lifelong Catholics children with obvious and dire problems and explained exactly what each of them needed and when, they unanimously declined to help.
When I told the sisters that no one had offered to support us, Sister Pushpa said, “We knew that no one would help you but we did not want to crush your hope.”
India, like these children, has so much potential. A relatively recently liberated democratic republic with 1.25 billion hard-working and patriotic people should be one of the world’s most formidable economies and superpowers. Yet, the ultimate definition of success here is the ability to leave. It’s a race to the top and every man for himself. The brain drain and caste system are debilitating and undeniable problems for India and its future.
Several of our new students this year, including Raj Nandani (above) are of the Scheduled Caste, otherwise known as the Untouchables, Dalits, or Shudras. They are members of the the lowest castes that make up approximately 16% of India’s population.
Many of our students’ parents are so illiterate they cannot even sign their names. The photo above is of a mother having to use her fingerprint to sign her daughter’s application for school.
I took the above photo of Manisha 13 months ago, when we wrote her name because she could not.
This is Manisha now, holding up her impeccable homework that has been marked “excellent” by her teacher. When people believe in you, you believe in yourself; you become proud of your work and you try even harder the next time. All these beautiful children need are opportunities for challenging learning and positive feedback when they succeed. We have done this at Squalor to Scholar and in one year our students have shattered everyone’s expectations of them.
Once our students are finished rocking their exams later this month, I’ll be heading out into the slums before dawn every morning with an iPad to Skype with sponsors and donors all over the world. I’ll be in touch soon to organize the video hangouts and share with you in live broadcasts some of the most inspiring children you’ll ever meet.
…It was 365 days ago today when I walked into the Carmel Convent School and met Sister Pushpa for the first time. She sat me down in her office and, for the next hour and a half, we had a conversation that I knew would change my life. We discussed such topics as the purpose of our existence, the plight of the poor, and the perseverance of the human spirit.
Little did I know, however, that I would walk into that same office one year later with more than three dozen slum children under our wings, that we would celebrate their outstanding academic and athletic achievements, or that I would be back here in India.
As of this time last year, Ajeet had no plans of ever attending school. He is now the top student among his high-end class of 160 students. In only a year, he has learned how to read nearly anything in English or Hindi, have entire conversations in English, and multiply and divide in his head even faster than I can. He didn’t have any dreams for his future 365 days ago. Now, he wants to become an engineer. NASA, I think you should get ready for one of the best employees you’ll ever have.
Daulati had never been to a doctor before her condition became severe and her family brought her to us. She has now had full radiology and lab workups and is under Directly Observed Treatment (DOTS) for her disease: tuberculosis of the spine. DOTS officials will visit her every other day for the next 9 months to administer her medication. More about her recent hospital visits is coming soon.
Marital and family disputes ended in violence for Prianka (our student) and her mother. Fearing for their lives, they fled together to a place no one could find them. After searching far and wide for over a month, we finally found Prianka and have returned her to the peace and love of our care. She is not only safe but happy and excited to return to her friends in the classroom. We have arranged temporary transportation to and from school for Prianka until her mother and she can find permanent and safe housing.
Inspired by our progress over the last year, Mamta started her own slum school this week. She found a bilingual teacher and is fundraising on her own to begin a new chapter for herself and many children in the slum. On the first day, 53 children and families showed up. Within the first three days, more than 100 children came for admission.
This week, Versha (our student in Lower Kindergarten) won “First Place” in her English Writing Competition among 164 of her classmates. We always knew she was talented; now, everyone else does too.
Many students have had impeccable attendance. However, Roshan’s has been nearly perfect with 222 days of attendance since we started recording last March. One must remember that our students attend school from early in the morning to late in the afternoon 6 days per week. This young man is dedicated, ambitious, and as photogenic as they come.
As you know, we’ve been hard at work looking for more high-potential children to give the chances of a lifetime. There are thousands who deserve our help. Some, however, stand out immediately. It’s like they’ve been preparing for our arrival all year…or perhaps their entire lives.
We’ve chosen our 15 young girls for the class of 2027 and have begun preparing them for the first day of school on April 1st, 2013. In coming days, I’ll be introducing them to you.
We are not the only people nurturing and caring for this new class of students. Our older students have, as I expected, begun treating our newest students like their little sisters.
This time last year, Indu was sweeping homes to support her family with an additional income of $20 per month. We took her and put her on an entirely different track. She is now one of the most hard-working students her teacher has ever seen. I wonder why!
Santosh died in January, shortly after his first birthday. His mother wailed and cried in my arms when I visited his home the day after he passed. Even though his death was caused by easily treatable diarrhea, his family has carried on. His 3-year-old sister is a student in Mamta’s slum school and his mother has already given birth to a new baby boy.
In only a year, we have impacted directly and indirectly thousands of people’s lives. We have promoted the value of education, the importance of healthcare, and, perhaps most importantly, the ideals of equality that sometimes seem so absent here. We are small, so small; but our determination and long-term outlook certainly set us apart.
Although many lives have been transformed here, I feel that I am the one who has grown and learned most from this epic journey. Over the past year, I have learned more about public health, business, education, politics, poverty, corruption, illiteracy, religion, spirituality, web design, photography, charity work, and humanity than I could ever learn in a classroom. As a strikingly honest and insightful physician correctly concluded earlier this week during my visit to a government hospital, I’m slowly transitioning toward a much more macro level of thinking and problem solving.
To the hundreds of people who have volunteered their services and donated their money to Squalor to Scholar over the past year, I am and will be forever grateful for your vital and unwavering support. None of this would have been possible without you.
…I spent the entire day today at the hospital with this beautiful, angelic, and incredibly unfortunate young girl named Daulati. Even among the slum’s residents, Daulati’s family is one of the most destitute of all. To make matters worse, she has half a dozen siblings, is severely malnourished, and can now hardly walk due to an infection that has contorted and crippled her spine.
I never met or even knew about Daulati when I was here last year. However, I became aware of her painful and debilitating condition nearly one month after my departure. She and her family had heard about our work treating other children and approached Mithlesh for help. Mithlesh sent me the following photo with a short description of her severe pain and evident need for immediate treatment:
Not knowing at the time what this condition was, I asked Mithlesh to take her to the hospital as quickly as possible. Amazingly, Daulati’s family had never sought treatment before. Mithlesh and Mamta both generously agreed and took Daulati with another of our patients to New Delhi on multiple occasions. The physicians there drained her abscess and referred Daulati to the All India Institute of Medical Sciences (AIIMS), India’s largest government research hospital, for further care and radiology.
At AIIMS, Daulati was diagnosed with “Tuberculosis of the Spine,” also known as Pott Disease.
According to the NIH, India has one of the largest concentrations of patients with TB anywhere in the world with more than 6 million radiologically proven cases. I can only imagine there are at least twice or three times as many people who actually have it but never seek care. Worldwide, approximately 30 million people suffer from TB and nearly 3 million people die annually from the disease. Among all cases of TB, approximately 1-2% of patients develop skeletal tuberculosis, approximately half of which are reported to result in spinal tuberculosis.
Patients with TB are often poor, illiterate, uneducated, and/or live in highly dense and unsanitary conditions. Multi-drug resistant tuberculosis (MDR-TB) is a growing problem in India, mainly due to a lack of proper patient education. Illiterate and impoverished patients start taking their antibiotics, improve, and then stop taking all medications because they feel better and don’t want to waste their time or money taking pills. Strict adherence to medication protocol over as many as 9 months is vital for curing a patient’s TB. However, these patients live day-to-day and lack the awareness of the harm they do to themselves and others. As a result of their failure to adhere to instructions, they occasionally develop MDR-TB that creates entirely new and severe public health concerns.
People here fear TB, as they should. Mithlesh expressed his concern of being infected. I could not ask people to take on a risk that I could not evaluate or take first. Instead, I attempted to have Daulati’s family take care of her on their own. However, they refused/were unable to go on their own. They live in the same room as her and breathe the same air all day every day.
Even though Mithlesh and Mamta had shown Daulati and her family what to do and where to go, they would not go alone. For the past six months, Daulati’s condition has continued to deteriorate. My first sight of her broke my heart. She is like a pile of mangled bones shrink wrapped in dark weathered skin. She walks bent over at a 90 degree angle with her arms assisting her every move like a primate. Watching her climb in and out of chairs or vehicles is heart-wrenching. How could her parents stand by and watch her suffer so miserably?
I never cease to be amazed by the extent of suffering people will endure here. Daulati’s condition has been worsening now for nearly two years. She has had severe kyphosis (hunchback) for over a year and yet her family never took her to a doctor. As shown in the photo above, Daulati spends her days laying in a mesh bed outside of her family’s little shanty in the slum.
The longer I stay here, the more I realize that healthcare among the poor in India is a complete mess. After experiencing the deaths of Kishan, Santosh, and numerous other precious little children who died from easily-treatable illnesses, I have realized that many of the problems are fairly simple. Rapid, early treatment could have saved faces and lives in many cases.
Today, however, Daulati’s world took a new turn. I suited up in a mask and gloves, placed masks on Daulati and her father, and then set out with them in an auto rickshaw to one of the best private hospitals in town for appointments I had made. Within 4.5 hours, we had visited multiple senior orthopedic and plastic surgeons and obtained T-and-L-spine MRIs, chest x-rays, and blood tests. She was an ideal patient and never once complained, even when her noisy, claustrophobic MRI took nearly 90 minutes.
The physicians today were not too concerned of active pulmonary TB, which is good news for her family and me. However, I will continue to take the best precautions I can.
We will return for her results and follow up on Thursday morning, when the surgeons will drain her abscess, treat her tuberculosis of the spine, and plan an operation to repair her kyphosis that would otherwise remain chronic.
How far would Daulati’s family had let her health deteriorate without seeking help? After my experience alone with her father today, I fear she would have almost certainly died.
Many thanks to the donors of Healing the Hidden who made Daulati’s MRI, x-rays, blood tests, transportation, and consultations possible today. Our combined efforts may very well save her life.
…It has been seven months since I departed India and yet I feel in many ways as though I never left. The constant din of automobile horns, pounding of factory machines, chants of salesmen in the streets, and clanking of billowing tuk-tuk engines create a unique atmosphere that cannot be forgotten. The air is thick with pollution and inhaling occasionally takes noticeable effort. It is very cold at night, to the point of needing fleece and a wool hat inside my sleeping bag.
I arrived in Delhi at 11:00am on January 10. After 28 hours of flights and airports, an hour of customs and immigration lines, and a 90 minute taxi ride from the Delhi airport, I finally arrived at Mamta and Shri’s home. Their daughters, Naysa and Nayma, were standing in the middle of the street with flowers in hand. I stepped out of the car to kneel down and hug them when they extended their flowers and harmoniously sang “Welcome to India, John Bhaiya!”
I unpacked and organized my belongings, set everything up as I had it before, and then joined two new volunteers, Amy and Bethany, for Mamta’s great cooking.
Then, off to the slum we went. I was immediately recognized by hundreds of children and adults in the slum. Many of the adults even came forward to shake my hand and welcome me back.
I had wondered many times what the reaction would be to my return. However, I did not predict or even consider the reaction I actually received. Everyone I had interacted with before in the slum knew that I was coming and the day that I was supposed to arrive. No one, therefore, was surprised by my arrival.
Interestingly, many of our students seemed initially hesitant to approach me. They would peek their heads around a corner, see me notice them, and run away with big smiles on their faces. It was as if many of them were playing a game of hide-and-seek.
Only then would they come closer. They ran up to me and stopped just in front of my feet. They made no attempt to touch me but looked directly up into my eyes with massive smiles and said “Hello, John Bhaiya!”
Neha ran to get something to show me. Before I left last May, I had given a picture of my family and me to each of the students. Neha’s family framed the photo and keeps it in plastic covering on the wall of their tiny dwelling. She was so proud to show me she still had it.
Manish and his mother Dolly were out in public prominently sitting along the main route through the slum. Manish has continued to receive treatment during my absence. His venous malformation does not appear to have grown, which is cause for celebration. I wish that we could do more but at this time surgery is still not an option here. I will take him to a physician soon for closer follow-up.
Mithlesh and his family have had a very tough time since I left. His father Narayan (center) was diagnosed in September with Grade IV Glioblastoma Multiforme, a very aggressive malignant brain tumor. He has undergone surgery and many rounds of radiation treatment at government hospitals. He remembered who I was and thanked me extensively for coming back. However, he can no longer remember the names of even his own family. His family, consisting of about 40 individuals, has pooled their money to support the tremendous expense of his medical care. They have spent all of their meager savings fighting for his life.
All of the students ask me if my friends Heather, Natalie, Crystal, Rehan, Dina, Jess, Yeonui, Merril, Win, or others are coming too. They ask for each of you by name and still have many of the gifts you left them. I tell them that you will not be back this year but perhaps in the future. Then they wobble their heads, smile, and continue on.
Ajeet was very excited to see me and anxious to tell me about multiple awards he has received at school. I asked him more about them and he sprinted away. He returned a few minutes later with his “Certificate of Honor” for a listening skills test and two gift-wrapped pencil boxes as prizes, both of which he placed back in the wrapping paper after showing me.
School is still out for winter break and will resume on January 16. Our students do, however, have a special class every morning during the break. Their class had already ended on this day so our students had returned home and removed their uniforms. Without their school attire, they are largely indistinguishable from other children in the slum (other than the girls’ red headbands, which they seem to wear all of the time and help me spot them from hundreds of feet away). Somewhat to my amazement, our children are fitting in with their peers in the slum with hardly any problems.
In the next post, we will join our students in their winter uniforms to their special class. Our children have learned a truly incredible amount in the last year and I cannot wait to share their success with you.
…In the late afternoon of April 9, I walked into the slums expecting to teach our students English and Math for a couple of hours before dinner. However, when I arrived at the school, a young girl and her father whom I had never met before were waiting to speak to me.
They stood just outside the door of the barren, dusty slum school looking directly at me as if they had been studying my daily routine. The bright orange shirt of the little girl drew my attention to her already striking face. Obviously in need of healthcare, I knew exactly why she was waiting for me.
I knelt down and introduced myself to the little girl in Hindi. Most Indians laughed when they heard my assuredly terrible accent for the first time, but she never even hinted at a smile. She didn’t speak to me either. She diverted her eyes and seemed all too accustomed to curious stares. With Mithlesh translating, I met the father and began to ask him questions. His name was Rajesh and his daughter, I discovered, was Prianka.
Her father told us that Prianka was 7 years old and that the right side of her face began to grow unusually large when she was only 6 months of age. For the past 6 and a half years, Prianka’s cheek had continued to grow at an increasingly alarming rate.
I knelt down again and got out my camera to take pictures of Prianka for the surgeons. She turned and modeled her deformity without expression or a peep.
I felt sad for Prianka. When I asked her father why she had not been treated earlier, he pulled out two opaque plastic sheets from a plastic bag he was holding. They were small x-ray films that looked like they had been produced in 1965. I could hardly even tell that they were x-rays of Prianka’s head. They were essentially useless; so, I naturally wanted to know where they had been taken.
That’s when my life changed.
All this time talking to Prianka and Rajesh, I had assumed they lived in the slum. After all, I had just met Santosh for the first time less that one week prior and he had been born in the slum while I was there. However, I was wrong to assume that about Prianka; I wasn’t even close.
Prianka and her father had actually just arrived in Faridabad that afternoon. For the previous 22 hours, they had traveled from rural Bihar, one of the poorest states in India. They had just traversed 600 miles of deserts and rivers aboard trains and buses because someone from their family had called and told them that there were westerners taking deformed children to hospitals and that they should come immediately to the Patel Nagar slum.
Without delay, without ever trying to contact me first, without ever even verifying that we would still be in Faridabad, Prianka and Rajesh left their rural and destitute homeland in the largest leap of faith and hope I had ever encountered.
I was speechless. I stood thinking just how committed, courageous, and, well, crazy their plan was. But their mission was over now and it was the beginning of ours.
Just two days later, we were getting Prianka’s CT scans, blood tests, and consultations. Having made inroads with many physicians while caring for Manish, Santosh, Moni, and Chandni, we were now treated like VIPs in the hospital. The plastic surgeon, whom I admire greatly, stopped his normal workflow and committed an entire morning of his time to the care of Prianka. He personally escorted us directly to the offices of the pediatrician, ophthalmologist, otolaryngologist, pathologist, and other surgeons for consultations about Prianka’s unique condition. We could not have received more exquisite service even if we had been royalty.
Then, as suspected, news came back that a biopsy was necessary and a surgery would likely follow. The cost was going to be more than $3,000 but the plastic surgeon knew we didn’t have that much to give. I talked to the Chief Executive Officer of the hospital, but he could only offer a 10% discount for charity. We returned to the slum with some big decisions to make over the coming weekend.
On Sunday evening, I received an unexpected call from the plastic surgeon. He gave me the best news imaginable. He had contacted a classmate of his from medical school who now worked at a government hospital in New Delhi and was able to treat Prianka for pennies on the dollar.
To Delhi we went. It was an hour long taxi ride to the hospital–$25 round trip. But it was a blessing compared to the $3,000 alternative. We took Manish, too, in case he would end up needing surgery as well. The doctors at the new hospital saw us immediately and we began to make valuable lasting relationships.
More tests were ordered and, while we waited for the results to come back, I wanted to treat everyone to lunch. At this point, I didn’t have much time left in India. I wanted to make the most of it. We had passed by a fancy mall on the way to the hospital so I had the driver take us there. Then, I invited him to park the car and come with us too.
When we entered the massive air-conditioned building, it became obvious that this was a novel environment for the children and their families. As we came to an escalator, Prianka and her father stopped.
They stared at the moving pieces of metal wondering how to proceed. Then, they both took another step of faith as they fought for their balance.
Here we were, one deformed boy and his Hindu family from the slum, one deformed girl and her Hindu father from a rural village in Bihar, a Muslim taxi diver, Jordan (a volunteer from Northern Ireland), and me, now shopping for a restaurant in a chic mall. Since the event was already a melting pot of beliefs, backgrounds, and lifestyles, I decided that Chinese food would be the suitable choice.
As one might expect, most of the people in our party had never had Chinese food before. It was a day of “firsts” for everyone, including the staff and patrons of the restaurant. I had no idea what to order and neither did they; so, we just ate what was brought to us.
Prianka dug into the noodles and chili fries with her hands, as is custom for her. She was much more at ease than her father, who seemed more worried about fitting in with the environment than she did. Everyone seemed to enjoy their meal, but I could not help wondering what was going through their minds.
What were they thinking? Why was I giving them this meal that would likely be the most lavish of their entire lives? Why did I invite the driver to come with us? Why did I even pay attention to these overlooked children? What was going on? Who is this guy? What did they think that I was thinking? Did they think that I was thinking about what they were thinking?
We may not be able to talk to one another, but that does not mean we cannot communicate. The most powerful form of communication is a genuine smile; and there were plenty of those to go around.
To these children, going to a restaurant, riding an escalator, and sitting in a toy car were like a once-in-a-lifetime trip to Disneyland.
The fun was perhaps a bit overwhelming and certainly exhausting. With lab results and procedure schedules in hand, we made the hour-long drive back to the slum.
Only one week later, I had to leave India to return home. At my farewell party, Prianka and her father gave me a bouquet of flowers. I vowed that I would continue to care for her, even from afar. From the United States, I continue to stay in touch with Mithlesh, Mamta, and the Sisters in the Carmel Convent School nearly every day. Even though I am 8,000 miles away, I have not lost my attachment and commitment to our students, patients, and friends. We feel like family now, and that has powerful implications.
Mithlesh and Mamta have worked incredibly hard over the past few months. They promised to carry on what we started, and they have. We owe them tremendous thanks.
The first positive news came back in late May after Prianka’s tissue biopsy was found to be negative for cancer. For Prianka and her family, this was news worth celebrating. This meant that we would proceed toward an operation.
Mamta and Mithlesh spent many days going back and forth to the hospitals with Prianka and her father. Unlike in America, the patient has to do most of the work in India. You keep your own records, get your own tests (each in separate locations), and then even have to pick up your own test results in person and take them to separate doctors at specific times and specific locations. To further complicate matters, some hospitals do not recognize or use tests from other hospitals and so they must be performed again. There are no maps or phone numbers to call for assistance. Life is all about dead reckoning. Needless to say, the Indian healthcare system requires extraordinary patience and determination. Luckily for Prianka, she found people with those traits to help her.
On June 12, Prianka was taken into the operating room under the care of Dr. Anurag Jain, Plastic Surgeon. The complex operation took 5 surgeons more than 5 and a half hours to conduct. Dr. Anurag’s assistants took pictures for me throughout the procedure. I have contemplated posting them but, quite honestly, they are graphic beyond description. Some day, Prianka might read this blog post and I would not want her to be frightened by the pictures of herself with half of her face missing. Just know one thing: what Dr. Anurag and his team did was extraordinary.
Ten days later, Prianka was discharged from the hospital. She returned to the slum with perfect vision and healing face that was still decreasing in size as the swelling dissipated.
Prianka and Rajesh then thanked everyone profusely for their support. They said their goodbyes and departed for the train station to begin their 600 mile journey home.
To me, these pictures are among the most special that I own. They are of a girl who was beyond hope, who was facing almost certain blindness and perhaps worse, who displayed courage and took a chance.
Prianka returned to her village on June 22. However, she still calls to keep in touch. Last week, in late August, Mamta spoke to Prianka and her family. She says that Prianka was laughing and playing on the phone, that she had enrolled in school for the first time, and that she was looking and feeling much better. Rajesh and his wife also spoke to Mamta and they could not stop saying thank you to her, to the surgeons, and to us.
I would like to express my most heartfelt gratitude to the people who made Prianka’s life-changing story possible. First, I must thank Dr. Anurag Jain for his many years of training and work to make a surgery like Prianka’s even an option. Dr. Amitabh Singh, without your help and guidance, we would never have found Dr. Anurag or been able to receive such tremendous care at your hospital. Mamta and Mithlesh, thank you so much for taking Prianka to the hospital on those many long days, standing in queues for hours on end in scorching summer heat, and volunteering your time for this precious little girl whom we only met a few months ago.
Lastly, I would like to thank my parents, Joseph and Mary Schupbach. They funded Prianka’s entire medical care, from the tuk-tuk and taxi rides to the hospital to the expensive CT scans to her medications post-operation. Without funding, none of this would have been possible. Overall, the $550 you allocated to Prianka’s healthcare has changed her life forever and mine as well. Thank you! I love you.
Prianka’s was the first operation funded by Healing the Hidden. However, it is far from the last. Santosh received his bilateral cleft lip surgery on Tuesday of this week. He is recovering at the hospital in Delhi as I write. Please keep him in your prayers and, if you have been inspired by Prianka’s story, please take a moment and donate 5 DOLLARS to Healing the Hidden for Santosh. Let’s join hands and help Santosh with his precious smile. It’s a smile worth $5.
…April 3, 2012: This morning, a mother named Sugo Devi brought her deformed infant boy to the slum school for help. This is the first time someone needing medical attention has actively come to us for assistance and marks a radical shift in our ability to provide care to this community. Parents of deformed children here have traditionally not sought help from others partially because of the negative stigma involved with having disfigured or handicapped children. Manish’s mother, for instance, turned away from me shamefully the first time I saw her holding him. Moni, even by age 5, had never been to a doctor to have her cleft lip and palate examined. Even the young “normal” children, the least likely to judge others based on appearance, originally refused to play with handicapped or mentally challenged children.
The fact that Sugo Devi showed up this morning proves that the purpose of our work is being noticed and understood far beyond our direct area of impact. The slum residents are beginning to trust us enough to overlook social barriers, which is a huge step in the right direction. I wasn’t in the slum when Sugo Devi showed up this morning, so the volunteers who were there told her to come back to the slum school at 5pm.
When class ended at the Carmel Convent School at 5pm, Heather, Natalie, Merril, Win, and I ventured into the slum. Sugo Devi was waiting for us in the shade of a slum home with her infant shielded from the judgmental eyes of others. We greeted her and introduced ourselves. Then Sugo Devi unwrapped her little boy from the excess fabric of her Sari.
The little boy, named Santosh, was shocking. No one present had ever seen such a severe cleft lip and palate.
As I gathered information for the surgeons, I was stunned to learn that Santosh was born on December 23, 2011 right here in the slum. I was likely within just a few hundred meters while she was in labor! For three months of age, Santosh is small. However, I told Sugo Devi that we will take her and Santosh to see the plastic surgeon in Delhi on Monday when we take Moni for her appointment. Sugo Devi looked grateful, wobbled her head, wrapped Santosh back up in her sari, and carried him back toward their home upstream.
Sugo Devi’s arrival is inspiring. Within the past few weeks, I have coincidentally stumbled upon three children in desperate need of medical attention. We have taken all of them to hospitals and found surgeons who are so inspired by our efforts that they volunteer their time to help us. Now, other ailing families are starting to seek our help. It was evident this afternoon that we needed to upgrade our plan of attack. Win, Mithlesh, and I immediately set out on a search and rescue style hunt through Patel Nagar for more children we could help. We decided to follow Sugo Devi’s route. With eyes peeled for deformed and handicapped children, we set out upstream.
In just over 90 minutes, we passed within 50 meters of the homes of more than 25,000 people. We stopped every 50 meters or so and asked the residents if they had seen any children who need medical attention, especially for anyone with cleft lips or palates. We found several children with uncorrectable birth defects, retardation, down syndrome, and/or polio. However, there were few children that we could drastically improve through medicine.
We searched in nooks and crannies, through the rubble of slum homes destroyed by the government, and past enough livestock to start a farm.
We were eventually led by a vigilant resident straight to Santosh and his mother. Santosh was attempting to sip milk from a bottle in his mothers arms outside of their home. Santosh cannot create suction, so his mother had unique ways to manipulate the milk into his mouth. What I saw next, however, is what made my jaw hit the floor.
With permission, I walked into Sugo Devi’s home. As I did, I learned that six people live in this tiny room about the size of my bathroom at home. Six people socialize, cook, eat, clean, and sleep in this tiny dwelling.
But even more amazing is the fact that Santosh was born in this room on December 23, 2011! I was here, walking through this slum several hundred meters away while Sugo Devi gave birth to Santosh right here on this bed. Yet again, shivers shot down my spine as I stood in the dark doorway trying to picture that scene. I imagined the cringing chaos, noises, and blood that must have filled that room on December 23.
I could hardly believe anyone would give birth in a place like this, especially with doctors and dozens of hospitals within 10 km. The Indian government would have even paid Sugo Devi to deliver her child in a hospital. However, almost all of the slum residents still opt to deliver their children at home.
We said thank you for the hospitality and carried on. Although we didn’t find any more children we could help immediately, we made our presence and mission known to the entire community.
I still wonder how many more children are out there? This is just one slum with 25,000 people and we have already found multiple overlooked children with severe and treatable conditions. There are more than 65 slums in Faridabad alone! We don’t know who’s out there, but we will never know if we don’t look.
It is my honor to introduce to you now our newest campaign, Healing the Hidden. Separate from the Squalor to Scholar Program, Healing the Hidden is attacking the lack of medical care and negative stigma about disfigured children head on. The purpose of Healing the Hidden is to provide medical treatment to overlooked slum children who might otherwise never receive the treatments they need and deserve. Your donations will help us seek, discover, and treat ailing children as well as educate their communities about healthcare options.
The new campaign is live and accessible via the blue link above. Your donations will help pay for these children’s consultations, diagnostic tests, treatments, transportation to and from hospitals, and medications. As with the Squalor to Scholar Program, every single penny of your donations to Healing the Hidden (except for small transaction fees) will go directly to children like Santosh, Manish, Moni, Prianka, and Chandni. Even Mithlesh, who lives in the slum, is working voluntarily out of his own goodwill because he knows what an incredible impact we are making.
Every dollar will make a difference. Where else can you so easily, directly, and rewardingly donate cures, smiles, and life to people who truly need your help? On behalf of the children and families receiving your care and generosity, thank you!