Niam’s Story – a letter from his mum Aarti

Written by Guest Writer

August 1, 2021

In this letter, Aarti hopes to encourage new parents of babies with Down Syndrome to look towards the bright future that lies ahead.

To all the new parents who have been blessed with a child with Down Syndrome,

I am writing this letter to share my story, to give you much needed hope and strength. My story starts in 2012, sitting in a car park with my husband, having just received the news that my baby had Down Syndrome. I never would have expected this would happen to me at the age of 31. My husband and I were both shocked. We both cried for the loss of a child that we thought we were going to have. We didn’t realise that our lives would never be the same again.

The next few months were tough. Not only were there many complications and ongoing scans, we were also faced with the negativity of doctors. One ‘specialist’ told us that our child would be severely retarded and we were offered to terminate more than once. He made us feel that it would be unnatural to continue with my pregnancy, knowing what we did. However we had both decided we were going to go ahead. I felt that this had happened for a reason and I was determined to be the best mother that I could be. It was my duty to protect my baby.

I started researching more about Down Syndrome, ordering books and signing up to associations. I had no idea what to expect but I know I had a supportive husband and family and I had a loving bond already growing, between me and my baby. I used to speak to my baby everyday and tell him that I loved him and everything was going to be ok. “Mama loves you,” I used to say, rubbing my belly.

My beautiful son was born at 32 weeks by a planned c-section. As soon as I saw him, it was love at first sight. It felt so surreal. There he was, my little baby boy and he was absolutely perfect! He weighed only 3lb and was soon transferred into an incubator and taken to the neonatal ward, where he stayed for five weeks. It was a few days later when I actually got to hold him. The nurse explained to me about Kangaroo Care, which was skin-to-skin contact to help control his temperature and develop our mother baby bond. She helped me place him carefully in my vest and what a wonderful experience it was! I instantly felt a rush of Oxytocin and as I looked down at his beautiful little face, I whispered, “I love you.” He responded by moving his head up and it felt like he made a sigh, as if to say: “Finally my mummy is here.” It was a very emotional experience.

Time has flown by so quickly and I cannot believe that my son is soon going to be six-years-old. There has always been a tremendous amount of support available to us and there are ongoing appointments from paediatricians, audiologists, ophthalmologists, physiotherapists, speech and language therapists, cardiologists, the list goes on.

In June 2017, my son had open heart surgery. It was the worst nightmare for any parent but we couldn’t believe how quickly he recovered. He is such a strong and brave little boy. He has accomplished many things that ‘normal’ children do but it has just taken him a little longer to get there. He has started school and made friends. He starred as Joseph in his first Christmas nativity play and on a recent holiday to Cyprus, we were so proud to see him on stage, dancing around with all of the other children. We are also very excited to see him appear in the new World Down Syndrome Video for 2019, ‘Don’t Stop Me Now,’ where he is seen on the DJ decks! There is not stopping this boy or any other child with Down Syndrome.

Our son has brought so much happiness into our lives. He has a wonderful sense of humour, is lovable, affectionate, sociable and he loves making others laugh. His smile is truly infectious. He has made me a stronger person, taught me to appreciate little things and love life. He is perfect and I wouldn’t change him for the world. It’s not always been easy of course but when is it ever easy to raise a child?

So to all of you new parents out there, don’t be disheartened or scared or worried. Be happy and be strong and celebrate your new bundle of joy. Try and enjoy every single moment and capture photos and videos to treasure. There is a supportive community of parents out there to help and guide you every step of the way. Every child is different, embrace their uniqueness.

My son is called Niam which means “gift from above”. That’s just what he, and every other child, is. A gift to be treasured above all else.

Love from,

Aarti, a proud mother


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