In 2001 our beautiful baby daughter Emily was born. Having suffered several miscarriages and fearing I may never be able to have a baby I was ecstatic. After a couple of years, I really wanted another child, my husband John was reluctant but I won over and became pregnant! I was 39 and decided to pay privately for a nuchal test as knew my ‘risk’ of having a baby with a disability was increased, so was very relieved when they advised the ‘risk’ was reasonably low.
However, at a routine scan the sonographer thought baby had talipes – clubfoot, and advised this could be an indicator of a chromosomal disorder such as Down syndrome. I can vividly remember going home and looking on websites about talipes and DS. I hoped and prayed that everything would be OK and my baby would not have DS – I had extremely negative perceptions of people with DS – the image of a rather overweight, unattractive older boy (in dodgy clothes and with a crap haircut) standing at the side of a road holding his mother’s hand to help cross the road. The very fact that tests are carried out and that termination is generally offered to any babies detected to have DS made me assume that who would want such a baby?
Because of my history of multiple miscarriages, I was afraid of having an amnio, so instead had several more scans and thought surely I’d had my share of misfortune in having the miscarriages, fate would not be so cruel as to deliver me a ‘Down’s baby’?
On August 16th 2004 at 10.24am Tom was born by elected caesarean and I thought our world was complete – a beautiful little girl and now a gorgeous baby boy. I can clearly remember waking up in hospital the morning after Tom was born thinking that I was the happiest person alive, but all that was to soon change……
On August 17th at 9.50am just a few minutes before Emily & John were due in, a consultant paediatrician, in rather broken English, said there was concern Tom may have DS. He was lying in his cot next to my bed and she picked up his hand and asked me “do you think he looks normal”? I was completely, devastated, my heart was broken, the maternal bond of unconditional love between Tom & I was slashed and I thought what a terrible mistake I’d made having a second baby. We considered adoption as we didn’t want a baby with DS, to have the burden of a child with a disability, as that’s how it was portrayed. Emily however was ecstatic and of course didn’t see anything other than her baby brother who she adore – we have a lot to learn from children.
The next few weeks were horrific – having had a baby before, I’d anticipated the same euphoria, excitement and tremendous happiness and yet here I was completely shattered, despairing and terrified of the future. I was mourning the baby I had hoped for and expected. I could not see Tom, my beautiful baby boy, all I could see was Down syndrome and that terrified and overwhelmed me.
It took a long time for the unconditional love a mother naturally feels for her baby to return and that still saddens me particularly when I think of new mums today, perhaps going through the same feelings. How I wish I’d known then and new mums know now how unnecessary all that pain and sadness is, that Tom would bring me immeasurable love and joy.
Tom is now at our local mainstream secondary school, he’s learning to play the drums, loves to play football with friends during lunchbreak and he and John have season tickets to WBA. He is excellent at reading, struggles with maths and will never master algebra. As a family we’ve been ski ing, spent an amazing Christmas travelling around Sri Lanka – Tom’s condition has not stopped us living our lives to the full. In the first few years we certainly had far more appointments and had to learn how best to help Tom, but that’s been enlightening and immensely rewarding.
Everything for a child with Down syndrome, takes longer but we’ve learnt to accept and embrace that – each milestone is appreciated and celebrated. Emily & Tom have a wonderful relationship and we are all without doubt better people for having Tom in our lives. Of course he can be a PITA at times, he’s a teenage boy – but the Down syndrome does not overwhelm him or us – he has the most wonderful personality, tremendous sense of humour and we could not be more proud of either of our children.
When Tom was born I thought it was the end of our world, instead I’ve discovered a far more interesting and rewarding world, one in which people like Tom live their lives without prejudice or discrimination. I now know how lucky I was that my ‘chance’ of having a baby with DS was not correctly identified and I am forever grateful that the Nuchal test had not been more accurate as I know we would have considered termination, through complete fear and ignorance. I would not change either of my children for all the tea in China – they are both perfect and have exciting futures ahead of them.
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