…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.