“There is a 90% probability that a kid who does not receive surgery for Cleft Lip and Palate would die before its 20th birthday”
– Sanjana & Nandini, Founders, Side By Side Smiles
The understanding of Cleft lips and palates seems to be very limited, specifically ‘why’ this condition occurs and ‘how’ one can rectify it. According to the Pediatrics Department of University of Virginia, School of Medicine – Some families have a history of clefting. There may be a grandparent, parent, cousin, brother or sister, or another relative who has had a cleft palate. This may be passed on from generation to generation. However, only 1 out of every 5 clefts are inherited. Alternatively, there are also many children born with cleft palates who have no family history of clefting. There is a lot of emphasis on ‘environmental factors’ as well that increase a mother’s risk of giving birth to a child with a cleft palate. “The exact cause is not known, but the risk of developing a cleft lip or palates increases if the mother smokes or is on drugs or alcohol”, says Sanjana. Besides that, certain medications or vitamin deficiencies have known to trigger the condition.
While there could be varied reasons escalating the risk of developing Cleft Lip and Palate, I got more inclined towards how early do parents get to know? Is the condition visible in ultrasound? “It’s possible to find out through ultrasound, but not always. In my case, my parents did not know about the condition until I was born”, says Nandini and Sanjana adds, “It also depends on the severity of the condition. In minor cases, it’s harder to reveal.” The Cleft Registry and Audit NEtwork (CRANE) Database compiles that around 81% of cleft lips are diagnosed before birth. While you receive a diagnosis of ‘cleft lip and palate’ from a regular ultrasound scan, it’s very likely that what was actually found was a cleft lip and gum. Only a very small number (1%) of cleft palates are actually diagnosed before birth. Once the diagnosis is done, the next step is surgery. “There is a 90% probability that a kid who does not receive surgery for this condition would die before its 20th birthday”, furthers Sanjana.
Sanjana Gangadharan & Nandini Arakoni are the young founders of Side By Side Smiles. An organization that focuses on spreading awareness and generating funds for the babies affecting from Cleft Lip and Palate. “What was the ‘sense of realization’, the driving force behind the cause?” I asked them. “My family immediately found out that I had a cleft lip when I was born. However, I’m incredibly lucky to have access to the proper care and resources that were necessary to treat my cleft lip. After a few surgeries, I was left with nothing more than a little scar as a reminder of my cleft journey. Additionally, I grew up with a completely normal childhood, but unfortunately, thousands of children are robbed of this same opportunity”, says Nandini, who shares a very close and affectionate relationship with Sanjana. “And, what could be better than getting an equally compassionate partner in one’s journey to nurture a cause like this.”
Every cause has a vision attached to it. A vision that helps it thrive and accomplish its continuously evolving goals. The vision of Side By Side Smiles is not only empowering and solution oriented, but also creative and inspiring. To ensure that people who walk their journey with them feel special, they make beautiful charm bracelets for $5. All proceeds from which go towards benefiting children who cannot afford cleft surgeries.
“Our short-term goal this year is to raise $25,000 and if you ask from a larger perspective, a $100,000 before we graduate. We are also in process of registering our organization as an official charity. Going forward, we do intend to add some local causes as well to our charity. Side By Side Smiles is associated with Smile Train, the great part about this is they do all the networking for us. We raise the money and they distribute it. In the longer term, when we aim to add more causes under our organizational umbrella, our prime focus would be on Special Education. For that, we would go directly to raise the money” – Sanjana & Nandini
To learn more about Sanjana & Nandini and support their wonderful initiative, read on: