INDIA
On average, 35,000 to 40,000 cleft children are born each year in India. According to local cleft and craniofacial surgeons, that is not how many children are operated on annually. Santhosh Mathews, co-founder of Love Without Reason, roamed the streets of Bengaluru in the early years of his life. Over three decades, he only remembers meeting one child born with a cleft and having developmental delays. Where are the children? The work of Love Without Reason and the emphasis and value on these children's lives is essential now, more than ever.
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Traditionally, the newborn baby would be given a name by her grandparents. When a little girl
was born to farming parents in a rural village outside of Bengaluru, India, this tradition was
not followed. Her grandfather saw the cleft lip and refused to give the child a name. Many of
the family members followed suit and rejected the child.
In many cultures, the social stigma associated with a facial difference is traumatizing because
of the lack of understanding and knowledge. Society's fear causes horrible reactions that leave
these innocent children ostracized and humiliated.
Disregarding their own community's social norms, the tiny baby's parents held on to their
daughter and loved her. They began to search for any way to understand what had happened and to
find help for her.
After many months, the family was introduced to Love Without Reason founder Santhosh Mathews.
The parents felt hope as he explained the simple surgical procedure to the family, especially
the grandfather. Santhosh shared his own son's success story. Still, everything they heard
seemed unimaginable for this family as they had never seen a surgery like this.
When the parents met with the surgical team in Bengaluru and prepared for their daughter's cleft
lip surgery, they held onto hope. They could only trust that their little girl would be okay,
and this would help.
The whole family went to the hospital to see her when this beautiful little girl was ready to
come home.
As Santhosh greeted the family in the ward, the grandfather turned to him with tears in his
eyes. "We didn't know how beautiful she would be. We couldn't see her in the way that you saw
her.”
That day this little girl's grandfather finally gave her a name. "She is so beautiful, and we
will call her by the name Amulya.”
Amulya means precious.
In a village on Bengaluru's outskirts, a woman named Rizwana found herself in labor alone as her
husband couldn't take off from his job. She was eager to hold her firstborn child. The moment
that Rizwana looked down into her newborn son's little face, eagerness turned into loathing.
This could not be her son.
Rizwana could not control her emotions. She was angry. She
was in pain. She angrily asked God, "Why am I going through this pain? What wrong did my
innocent baby do to deserve a face like this? "
Baby Rehan was born with a bilateral cleft lip. Rizwana had never seen a child with a cleft and
was dismayed.
These questions tormented her for days. She felt hopeless and helpless and alone without her
husband, Sher Ali Khan. People asked her questions, and she had no answers.
She felt
like a failure, a failure to everyone. When Sher Ali Khan was finally able to see his new son,
he struggled to comfort Rizwana. He felt, "As a father, all my dreams and hopes for my child
were shattered when I saw his face."
The parents began to research the bilateral cleft lip. Relief swept over them as they learned
that Rehan could be helped through surgery. Rizwana cradled her little son with love and dreamed
of the day he could have surgery.
The family understood that affording the needed surgery to repair their baby's cleft lip was
probably impossible. This didn't stop them. They started to save from their daily wage jobs for
Rehan's surgery. Even her grandmother contributed to the funds from her cigarette-making job.
Despite their struggle, they felt discouraged and wondered if they could ever afford surgery to
repair their baby's face.
Finally, someone told them about Love Without Reason and the free surgical care that baby Rehan
could receive in Bengaluru .
The family used their meager savings to travel to the city and meet with the chief craniofacial
surgeon, Dr. Sathish. Overjoyed, Rehan was cleared for surgery, and the date was set.
Sher Ali Khan could not hide his anxiety, but he also held on to his son's dreams as Rehan was
admitted for surgery. Rizwana and Sher Ali Khan entered the recovery room after a successful
repair and were handed their little Rehan. Both parents were shocked again! The tears and the
delight on their faces were genuine and heartfelt.
"Thank you, Love Without Reason, and Dr. Sathish, for our miracle. I could not even have
imagined my Rehan would be like this. You saved our family when there was no one to help us."
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Hazira and Riyaz have lived in Bangalore all their lives. They are the proud parents of their 20
year-old son, Khurnium. Khurnium and his father Riyaz both work as taxi drivers - known as auto
rickshaw drivers in India.
Khurnium grew up alone in the house, he always wanted siblings. He watched as his mother went
through six miscarriages over a span of twenty years of his life. He saw her grief and sorrow
over each pregnancy loss. She desperately wanted to have another child, but due to her diabetes,
she had miscarriages.
In 2019, when she thought all hope was lost, she became pregnant with another son. The family
was overjoyed. Due to previous miscarriages, the obstetrician was more cautious and diligent to
do all to protect the baby’s life. With the many tests and ultrasounds, the family was advised
that their baby would have a cleft lip. However, nothing could take away their joy to have this
child in their life. Due to Hazira’s health issues, baby Mounnadin was born four weeks early. He
had many breathing issues and remained in NICU for two weeks. He was finally released home, but
the parents struggled in thinking about the cleft lip repair. How could they afford the surgery?
They spent all that they had for Mounnadin’s delivery and hospitalization.
Miraculously, the intensivists at Aster CMI hospital, a partnering hospital of Love Without
Reason, introduced the parents to the Love Without Reason family. At the right time, Mounnadin
had successful cleft lip repair, and the family rejoiced with chief craniomaxillofacial surgeon,
Dr Sathish. Hazira said, “We cannot stop saying thanks to Dr. Sathish. He shared with us about
Love WIthout Reason, and we are so thankful for the free surgery provided for our son. If we see
any children with cleft lip or palate, we will be sure to introduce them to Love Without
Reason.”
Khurnium too is overjoyed. “I can't wait to teach him how to drive, he grinned. There is so much
joy in our house now. My mother will stop crying now, and our family will do everything to take
care of our Mounnadin.”
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