First published in Melbourne’s Child in 2004
(Also published in Sydney’s Child)
I used to be a waiting room novice. That all changed one sunny February day when the phone rang in our house in Wellington, New Zealand. The doctor was abrupt, rushed. The heel-prick test on our seemingly healthy 5-week-old son, Aidan, had come back positive for cystic fibrosis (CF). It wasn’t a definite diagnosis and I should call him when he came back from his holidays to do more tests. In a few weeks. A few weeks!
After years of reasonably good health and little real contact with the medical community, this terse phone call was the first of many important interactions I would have with doctors. And it wasn’t a great beginning. This Head of Department excelled in Paediatrics and Neo-natal medicine, but seemed to have forgotten what he had learned in Compassion and Empathy 101. Breaking bad news was not in his ideal job description. And, to be fair, maybe it shouldn’t have been. But he wasn’t the only one in the deep end. Which chapter in all of the “How to Be a Wonderful Mother” books I’d read told me how to deal with doctors, disappointment and…cystic fibrosis? I was completely unprepared for this shock and so, it seemed, was my doctor.
Thankfully, my next doctor encounter was better. It came only about an hour later. As my husband Darryl and I began to absorb the news it soon became obvious that if there was one thing we couldn’t tolerate, and possibly didn’t need to, it was a two-week wait. I phoned our reasonably new GP for help. His response upon hearing our story was a heartfelt “Oh, sweety-pie.” Normally I’m not big on such terms of endearment, but I nearly leapt down the phone line to hug him. He quickly became a trusted friend. His words acknowledged our hurting. He hurt for us. It was not the moment for professional distance; it was time to relate as a caring human being.
The diagnosis was confirmed the next day, thanks to our on-the-ball GP. At least we had an answer. We were already hoovering up as much information as we could about this new enemy. As part of Aidan’s overall ‘health team’, the more we could learn (about him and CF), the more we could contribute. But we had a heck of a lot to absorb about this complicated genetic disease that affects many organs, most importantly the lungs, and still lacks a cure. The more we read, the more convinced we became of the importance of our role, alongside our doctors, as informed parents.
Growing up in California I was taught that medicine is a participatory act; the doctor is the partner, not the instructor. However, after a dozen excruciating appointments, the reality began to dawn on me that not all doctors suffer through a decade of medical training to become ‘partners’ with patients (okay, I’m a bit of a slow learner). As Darryl – a Kiwi – gently reminded me on occasions, being a guns-blazing American would not always give us the best outcome for Aidan. If I wanted to receive the best care for him I would need to learn a patience and respect which, unfortunately, didn’t seem to come naturally to me. When Aidan was nearly two, I was forced to take a crash-course in these traits when we left New Zealand and moved to France.
Paris brings to mind many things – romance, the meandering Seine, the Eiffel Tower, fabulous food, amazing architecture and…language and cultural challenges. During my first months in France these issues overwhelmed me on a daily basis. Nowhere were the challenges more pronounced than in my interactions with the medical world. The small things became huge as I grew to respect the French technical expertise but despise many cultural habits. Though doctors around the world seem to practice tardiness, the French have made it an art form. Our Professeur repeatedly swept in the door more than two hours after his first appointment, with an entourage of young Fellows traipsing behind. Apologising never crossed his mind. He assumed his patients would be grateful to see him at all. And, of course, after hours in the cramped waiting room we were ecstatic to be released into his office! Ironically, the one day I arrived 15 minutes late for clinic he obviously had somewhere he needed to be. Half a dozen nurses, doctors and physios stood in the hall madly gesticulating at us. They continued to lament the error of my ways as they ushered us into his presence. How could I ever form a partnership with this medical god?
As all parents of kids with chronic health problems know, we are often faced with choices we don’t like. So, we persevered. I dutifully arrived at each appointment with a substantial list of queries (not a French habit). And our Professeur, to his credit, patiently waded through them with me. When our second son, Oliver, was also born with cystic fibrosis, he drove all the way across Paris early one rainy morning to examine him before we left the hospital. Progress. However, a year later when Oliver was hospitalised for a month many of our latent differences came to a head. We wanted one parent with our son all the time; they felt we ‘hung around’ the hospital too much. We expected explanations; they thought we didn’t trust them. We worried about Oliver’s emotional state; they worried about ours! From food to beds to respect, we struggled to find common ground. I can see now that our foreign set of expectations challenged them, but at the time I swore that the day Oliver left hospital I’d be on the plane out of France forever.
Alas, not being one to follow through on threats, we stayed another 3 years. And, against my wishes, I began to develop some of those missing skills. Patience. Respect. Tolerance. They now coexist alongside a determination to get the best care and a persistent hope for a cure. These are, I believe, the goals of most doctors too.
Now settled in Melbourne, I feel very positive about the care our kids are getting at the Royal Children’s. Professionalism is combined with a concern and respect for them as people. Of course some days I can still be found staggering across the hospital parking lot after appointments, completely shattered. I don’t always understand or agree with the way things are going. But I think that’s the nature of CF. And, despite their years of training, our doctors still can’t totally control this disease because they are, after all, only human. No matter how much we would wish them to, they can’t perform miracles.
I never spoke to that first New Zealand doctor again. I don’t even remember his name. But I know that although I’m probably still only at the Beginners level, I’m much better at this doctor-patient relationship-building than I was when our paths crossed 8 years ago. Let’s hope he is too.