The Angel At Home: The Journey Of Raising A Child With Down Syndrome

A family’s beautiful account of parenting their brave and inspiring daughter.

Finding out you’re pregnant is a time filled with emotions – joy, anticipation, nerves. For nine months you can only imagine what it might be like to meet your little person! For one mum and dad, their journey into parenthood started off like any other but quickly changed soon after their first daughter’s birth and subsequent diagnosis of Down Syndrome. Little did they know of the bumpy road that lay ahead, but also the great joys that would follow. This is Nagashree (seen in the picture above with her sister Sharada) and her family’s incredibly brave and inspiring story.

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The Beginning: Our Wonderful Baby Is Born

This was my first pregnancy and like many parents-to-be I was so thoughtful, imaginative, weaving so many colourful stories about the expected member of the family! On Monday, 3 January 2005, I was in the labour ward at a hospital in my maternal home of Shimoga, a District headquarters in Karnataka State, India. As the pain started, I was filled with joy even though it was unbearable. And then, the baby girl was born! I remember the feeling so well: I was joyous! All the family were so thrilled to finally have a baby girl! Until then, we had been dominated by boys.

A couple of hours after Nagashree was born. I somehow felt uncomfortable with the talks, actions and expressions of doctors and nurses around. Somehow, the usual happiness was missing in them; I got to know later that the child could have “Down Syndrome”. My husband rushed to Shimoga from Mumbai – calmly managing the situation though we were completely unaware about the disorder Nagashree was carrying. We received all sorts of advice, suggestions and solutions that our minds were spinning.

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Dealing With Down Syndrome And Further Challenges That Lay Ahead

Soon after Nagashree was born, we went through all the tests and extra tests needed because she had Down Syndrome. We got to understand that there was an AV canal defect in her heart as well and she required open-heart surgery. Again, a battery of doctors and specialists were consulted, suggestions were made and advice was given in an effort to ease the tension (super-natural prayers and scientific solutions included!). Finally, at just six months old, she was admitted to Narayana Hrudayalaya for open-heart surgery.

It’s an amazing institution, they (Dr. Rajesh Sharma and team) not only handled the complicated surgery but they took wonderful care of our daughter. There were complications in between because of an effusion issue, and so a thoracic duct ligation also had to be performed. After the surgery, Nagashree had to have oxygen at home for almost six months.

It seemed to be one thing after another. I almost forgot to mention Nagashree also had an infection called Pyogenic Meningitis (bacterial meningitis) when she was just 45 days old. She had to undergo strong antibiotics treatment for around 21 days – survival was a miracle. Nagashree was indeed strong-willed, even at that very very tender age! Our poor little girl went through so much pain.

“While we were able to share our emotions with our nearest and dearest, she couldn’t – except for smiling with her twinkling eyes!”

Despite everything she went through, she was always smiling and helped all put on a brave front.

Read more: Pregnant In Hong Kong During The Time Of COVID-19

A Sigh Of Relief: Finally Some Stability

Luckily, after all the hospitalisation, my husband changed his job and got a transfer to Mangalore, a coastal city. It’s here that she started her developments as a carefree baby. Though her developmental milestones were delayed, and by now we were aware of them. Our only aim was how to improve the situation, not to cure it.

It was also in Mangalore that Nagashree’s younger sister, Sharada, was born. Soon after that, we shifted to Bangalore for two years. Here, Nagashree started going to a special pre-school equipped to help nurture children with Down Syndrome. The school and teachers were exceptional. With their attention, love, care and empathy, Nagashree learnt her initial social interaction and responses from her beloved teacher Mrs Suma.

After that, we moved to Mumbai and the next three years ticked by – because there wasn’t much change qualitatively to Nagashree. As a mother, I was always worried. How will she be able to cope with the challenges? What tools can I give to her? With this playing on my mind, in 2013 I started a Diploma in Child Psychology and Learning Disability Management to understand more about it. I’ll be very frank – the support and encouragement we received from family and friends was excellent. However, the society surrounding us was still the same: judgemental. Inclusion is something that everyone talks about but is seldom practised. Luckily, our experience in Hong Kong has been positively different.

Read more: How Hong Kong Parents Are Tackling Issues Of Diversity And Inclusion

Move To Hong Kong And A Positive Future

We moved to Hong Kong in 2014 as my husband got a transfer with work. With the help of the Education Bureau (EDB) and the Special Educational Needs coordinator (SEN), Nagashree got a placement in Jockey Club Hong Chi School in Wan Chai. It’s an amazing school; the teachers, social workers and eco-system are all superb. Now she goes to Hong Chi Shiu Pong special school in Tung Chung, which is equally an excellent institution. Nagashree has been coached extremely well, the wonderful young woman that she is today is largely because of the school and its environment.

As a mum, I was always scared of her running helter-skelter. I always had to hold her hand always when we are outside and so it became a sort of a phobia for me. Within a year or so, her attitude has changed a lot. Believe it or not, today, she’s the most disciplined, well behaved, organised and most punctual member in the family! She never misses her schedule.

To list only a few of her achievements and most endearing qualities, I’d have to say:

• She is incredibly disciplined
• Is very honest
• Shows the purest form of love and affection
• Is extremely caring
• Is good at social interaction
• Is very good at picking up languages
• Has an impeccable memory (she remembers verbatim the songs we sang during her childhood 10 to 12 years ago!)
• Is fun and has a wonderful sense of humour
• Has her own logic and way of making connections

“Perhaps, the most important achievement of all is that she is the glue that binds us together as a family.”

If ever we happen to engage in an argument or discussion, Nagashree has a role to play (either visibly or invisibly)! That’s the power of her presence amongst us.

She’s a very protective big sister to Sharada, right from the very beginning! Now they’re inseparable – sisters, friends, cat-fighters and all! As parents, it’s a pleasure to sit back and enjoy all these experiences during our life’s journey. We are so very lucky and proud of our wonderful girls.

I will be failing if I don’t mention the incredible help that she – we – have all received in Hong Kong from society, it’s immeasurable. Not only from governmental and NGO institutions but also from the people around. Much more than just sympathy, it’s this unwavering support and encouragement that matters the most when raising a child with Down Syndrome.

We are very aware of the real challenges she has yet to face in the coming years. Down Syndrome has caused limited abilities in mathematical and scientific calculations yet she is extremely good at social behaviour. Her logic in finding solutions is amazing! She’s always thinking of how to help. A lovely example is how once when I was exhausted from work, she offered me help as soon as I reached home. I was so happy, I said “Nagashree, I don’t know how to thank you!”.  Her answer? – “Just say so” As simple as that! We often feel that her logic and way of thinking is worth further research!

“In a world that is all too often convoluted, she is a breath of fresh air. We can all learn a lot from Nagashree on how not to overcomplicate or overthink things.”

Fifteen years have since gone by. Now she is in her sixteenth and getting stronger and stronger. Nagashree is a real pearl, an angel at home! To put it simply, whenever she is around there is a positive electrifying atmosphere to be found.

For more information or support check out the Hong Kong Down Syndrome Association.

Read more: Children With Special Needs: Education And Assistance In Hong Kong