Moni, Manish, and Chandni…

…On Sunday, two new highly motivated volunteers joined us. Merril Guzman of South Lake Tahoe, California, and Win Le of Vancouver, Canada, could not have arrived at a more inspiring time. Yesterday, they met our slum children as we accompanied them to school for the first time. Today, the three of us took Moni, Manish, and Chandni to the hospital to see the plastic surgeon.

When we arrived in the slum, all of our patients were waiting with their mothers and one grandmother. We walked a few hundred meters out of the slum to the nearby Delhi-Agra highway that serves as the main road through Faridabad.

Like crossing any streets here, there are no crosswalks, street lights, or stop signs. Even to cross the main road between a city of 18 million people and a city of 2 million people, the common procedure is just stick out your hand and signal traffic to stop while you start walking. This is partially the reason why it takes so long to drive anywhere in India. Even on the main highways, traffic is always stopping for pedestrians, animals, and slow vehicles to cross the road.

Once safely on the other side of the highway, we became the center of attention for passing traffic as we waited to flag down an auto-rickshaw going our direction.

There are two ways to take auto-rickshaws here. The most common way is to take a ‘shared’ auto. Starting at 7 rupees (14 cents) per adult for most distances within 5 km, you just hop in with up to 17 strangers going the same general direction. The other option is to hire a ‘separate’ auto. The cost for separate autos is essentially what it would cost to buy all 8 seats to go the same distance.

After a few tries and only about 60 seconds of waiting, we found a shared tuk-tuk going directly toward our destination. We jumped in with two families who must have wondered what in the world was going on with three foreigners and three disfigured children boarding their auto.

–Chandni with her mother, Reena–

–Manish with his mother, Dolly–

Down the road, we stopped at the gas station so the driver could fill up on diesel while Manish appeared to try some calculations.

–Moni with her grandmother, Pyaree–

After about 20 minutes and less than a dollar spent for the entire ride, we arrived at the hospital and waited to see the surgeon.

Manish was the first to see the doctor, who took dozens of photos and measurements of Manish’s hemangioma and called the pediatrician to let him know we were coming to see him too.

Before today, Moni had never been to a doctor. Cleft lips can usually be repaired as early as 3 months old and cleft palates as early as 6 months old. Now, she is 5 and is suffering socially and psychologically because nobody around her seemed to know that such surgeries were even possible. She wasn’t very happy about her first visit with the doctor. Little does she know how much a surgeon is soon going to change her life.

In government hospitals like B.K. Hospital where I volunteered for a month, cleft surgeries are free. However, we are treating these children as if they were our own. I want to get them the quality of care and service I think they deserve. Unfortunately, here at this hospital, the cost for a cleft lip surgery is Rs 45,000 ($900).

That’s when the doctor got on the phone. Thirty seconds later, we were scheduling an appointment with another doctor at a well-regarded hospital in Delhi who operates in partnership with the US-based charity Smile Train. We will visit him on Monday to schedule a surgery generously paid for by Smile Train.

The crying and waiting finally wore Moni out. She slept for most of her visit with the pediatrician.

Chandni, who is 6 months old, was next. We learned that she has a condition called hemifacial microsomia (HFM). HFM is the second most common facial birth defect after clefts, with an incidence of about 1 in 4,000 births. It is caused by lack of oxygenation or blood supply to cells that have already differentiated to become parts of the face during about the 4th week of gestation.

Nothing can be surgically treated yet for Chandni. If the surgeons operated now, they would risk exacerbating the problem by damaging growth centers. Chandni will have to wait until she is seven for her face to develop to an extent that surgery will be safe and maximally beneficial.

In the meantime, we will get Chandni a Brainstem Evoked Response Audiometry (BERA) test to ensure proper functionality of the inner ear as well as an ultrasound to check for renal and cardiac malformation (other defects occasionally seen in combination with HFM).

–Chandni’s underdeveloped ear is called a microtia–

To me, what is even more shocking than these deformities themselves is the fact that all of these children live within an area only slightly larger than a football field. It makes me wonder just how many children are out there just like them.

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