I actually remember the day I saw Kylie’s photo appear on an online Down syndrome forum and recognised her as someone I went to school with. And got a little excited. While I did know other people who had children with Down syndrome, it was the first time I’d recognised someone from my past who was also part of the ‘club’. As it turned out, our chromosomally-enhanced boys were actually born within two weeks of each other, we are both mothers of all boys and she has impeccable taste in boys names. Kylie is one of the smartest and loveliest people I know and I’m so honoured she agreed to write a post for us here. Thank you x
When the doctor sat down to face us a week or so after our first son Charlie was born, I knew automatically it was not going to be the news we wished for. I could read the nonverbal cues in an instant, being familiar with the ‘breaking bad news’ ritual, but the difference was that this time, I was on the receiving end. Usually, I was the one imparting such news, for I am a doctor myself.
When it was confirmed that Charlie had Down syndrome, I sat in silence mostly watching my husband to assess his response. There was certainly some language not fit for civilised ears, a brief discussion and we were then left on our own to deal with our new knowledge and cling to our son in peace. As it turns out my husband was not aware of what Down syndrome was exactly, and once I clarified that it was quite different than some version of severe quadriplegic cerebral palsy that he had envisioned, he was okay. If I hadn’t been a doctor, perhaps the explanations provided by staff would have been expanded to include his understanding also.
When I was working in paediatrics it was often commented how calm I always looked during resuscitations, which surprised me. My cool calm exterior can certainly cover up a maelstrom of internal feelings. Those couple of days after Charlie’s diagnosis in hospital saw that calm façade shatter briefly and that was difficult for me. I was embarrassed to be in a hospital I had worked at previously. I wanted anonymity. The horror of crying like a banshee once in the corridor where staff could see me and the shock of seeing one of my regular patients in there at the same time was all too much for this usually calm and collected soul. I didn’t have the heart to tell a doctor who saw me bicycling Charlie’s legs and massaging him that I was just doing what mums instinctively do to their babies, not performing proactive physiotherapy as was suggested. Don’t get me wrong, there were moments such as giving a junior doctor some career advice and tips on how to take blood off a neonate that grounded me and provided familiarity. Even the cheap tasteless coffee and tea in the ubiquitous styrofoam cups was something I was accustomed to, having been an employee of the health system, and I clung to these cups like they were a liferaft. Mercifully our stay was brief but I did feel at that point being a doctor was more of a hindrance than a help.
I often hear how lucky it is that Charlie has a doctor for a mother. Sure there are some benefits, such being able to replace a pulled elbow (twice- oops!), understanding the complexities of our medicare system and pharmaceutical benefit scheme, and having inside information on hospital hierarchies and processes. Having a child with extra needs does call for care coordination, time management skills and planning – certainly areas I am familiar with as that is also a role I perform as a general practitioner. But, like any medical parent will tell you, when it comes to your own child you totally lose perspective. As a new mum, I was blinded to my own baby’s severe jaundice and poor feeding and delayed treatment, which I would normally instantly recognise in a patient. When my children are sick, I am a mum first and foremost.
I have three university degrees, a diploma and a fellowship. None of this prepares you for parenthood. In fact, my major in Japanese has as much relevance to my medical degree when it comes to raising children some days. I’ll admit my first port of call following Charlie’s diagnosis was a rather drab textbook called ‘Nelson’s Textbook of Pediatrics’, which provided some cold clinical information on Trisomy 21. I sought solace in what I knew best – learning – but quite possibly I could be the only new parent of a child with Down syndrome to use a textbook as their first reference. There inlies another downside of being a doctor – I had to overcome my preconceived ideas, beliefs and expectations that I wasn’t even aware I had. It took some time for me to recognise and move beyond this, to look beyond my comfort zone of textbooks and traditional medicine. Luckily being a doctor is comparable to being a detective, the art of problem solving at its heart. This skill has certainly given me an edge in researching gene transcription and regulation, epigenetics, neuroplasticity and applying this knowledge to help Charlie’s development.
I experience the challenges facing all parents of young children – the lack of hours in a day, the endless cycle of washing/cooking/ cleaning, maintaining relationships with your partner and friends. Going to work is frankly my respite from this, where I put my problem solving to use, share in patients’ celebrations or sorrows, or just provide a listening ear. My days off are full of my children’s laughter and tantrums as I run a semi-structured program of physical/cognitive/speech development at home for Charlie’s benefit. If I accomplish the tasks I set out to achieve on any given day, it certainly is a rare occasion and cause for celebration. I yearn for balance in all areas.
Beyond the delight and joy of watching my two boys grow and learn, Charlie has taught me patience abounds and expanded my horizons considerably ( l’ll admit the patience is always a work in progress). I would have never met the amazing collective of families online and in real life from within the T21 community, who continue to inspire and challenge me. My simmering elitism has been effectively extinguished. I like to think I am a better doctor and I am most definitely a better person. For all these things and more Charlie, I owe you.
Kylie lives with her husband and two small boys on a cane farm in a regional town of Queensland. She works part time as a General Practitioner, and has fond memories of hobbies such as reading, sport and travel.