(Author's Note: Names have been withheld for privacy. )

​

"When she was born, she was too small, just like a one-liter water bottle," Chhutki’s father chuckles as he recalls. 

Born prematurely, at just 7 months, Chhutki’s early days were marked with difficulties. The tiny newborn spent the first 19 days of her life in the Neonatal Intensive Care Unit (NICU), a period fraught with anxiety and fear for her parents. "On the third or fourth day, the doctor told us she might not survive and that was a very big, sad moment for us. They said they'd keep her under observation for 48 hours,” her father narrates. His voice tinged with gratitude and relief, he concludes “By the grace of god, she survived the 48 hours, and after that she took some feeding from her mother."

‘When I first got the father touch, I almost had a heart attack, my heart was almost in my mouth,” he adds animatedly.

​

However, that was hardly the end of their journey in the hospitals. 

Initially, the family was drawn to believe that her small stature was due to her premature birth. But after consulting a fetal medicine and genetics specialist- at Apollo Indraprastha Hospital, they found out that Chhutki actually suffered from Seckel Syndrome, an autosomal recessive genetic disorder that affects multiple aspects of growth and development. Children with Seckel Syndrome typically exhibit severe growth retardation, both before and after birth. The condition can also involve cognitive & physical abnormalities, although the degree of these symptoms can vary widely. Upon being informed of the same, Chhutki’s parents were worried, especially with regard to the potential neurological impact of the condition, such as intellectual disabilities and premature closure of cranial sutures. “Aisa kuchh nahi hua (Nothing like this happened), luckily. Ye sabko recognise karti hai (She recognizes everyone). She recognizes voices & objects too,” her mother states proudly. This stands as a testament to how rare genetic conditions can have varying impacts, and how every individual case must be dealt with differently. 

​

In Chhutki’s case, the disorder is characterized by growth retardation, microcephaly, and distinctive facial features such as a beak-like nose and large eyes. This leads to a different set of social problems.; Her father shares, with a note of frustration in his voice, “Abhi delhi aaye hai jaha hum kahi bhi chalte hain toh hum dekhte hain ki sabhi log humme hi stare kar rahe hai, isko dekh kar.” (Here in Delhi, wherever we go, we see people staring at us, just looking at her). his kind of judgment isn’t limited to just strangers; sometimes, her parents feel that a certain amount of disbelief and prying questions came from their own family and friends. “People are not used to these kinds of faces. Still, except one of my friends who is in a medical line, no one knows she is a Seckel Syndrome baby….We have not told them. Obviously, at the first instance, everyone asked ‘Why is she small? Why is her face so small.’ But abh sabko aadat si ho gayi hai. (But now everyone is just used to it.)”

​

Nonetheless, despite the hurdles that navigating these social challenges presents, Chutki’s people skills remain at par, if not better, than those of her peers. “She's very friendly also; she talks to everybody, whereas kids of her age are very reserved… she [Chhutki] gets along with everyone, small or big!’’ says her mom, with her dad adding, “Yeh humaare dosto ke bacho ke beech bhi jaati hai, toh she is the most active! So people have stopped asking. Weak hai toh weak hai. Accepted ho gaya hai. (Even amongst our friends’ kids, she is the most active. So people have stopped asking. If she is weak, she is weak. It’s accepted.) Chhutki, therefore, truly proves how even the visible manifestations of such a syndrome do not necessarily have to be a barrier to building social connections and participating wholeheartedly in group settings.  

​

Her parents do fear that such kind of social assimilation will get more difficult, as Chhutki grows older. As her father astutely notes, “I think once time passes and she grows older in age, she will start understanding ki mai auro se choti hu. (that I am smaller than others.)” “We fear that moment only,” her mom adds, “Not for us, it doesn't matter to us anymore. But we fear how she will react and what feelings she’ll have.” 

​

Such questions loom large, but the family remains committed to supporting Chhutki at every step of her journey. Living in a joint family that has succored Chhutki all throughout has been crucial to both her steady cognitive development, as well as her social confidence. 

“Family is always first and foremost [in supporting them]. If we didn't have our family support…then it would be very difficult to bring her up,” admits her father. 

Above all, the parents advocate for consistent attention to the child. “Continuous care and support. No neglect,’ her father states firmly. “Be with the child, always," her mom adds, stressing on the need to never make the child feel lesser than or unloved. 

As Chhutki tries to argue with her parents to let her download just one more game on their phone, they laugh, saying that she might in fact be just a little too pampered and loved!

​​