It was bound to happen some time. Lil Z has been going to the Royal Children’s Hospital (RCH) for over three years now. All her doctors are based there and all her medical procedures are conducted there. Over the years, I’ve been amazed at the kindness of the staff at the RCH. The doctors, nurses and technicians that we’ve encountered have, in general, been competent and lovely people who have always shown Lil Z respect and taken the time to explain and discuss Lil Z’s issues and my concerns – however long that may take. But it was always too good to last.
Our run stopped when Lil Z had her first appointment at the scoliosis clinic. And it was a bit of a shocker. The Orthopaedic doctor didn’t acknowledge us when we entered the examination room, he didn’t ask one question about Lil Z, and he didn’t examine her, let alone look at her. He looked at the x-ray on his computer and declared that her scoliosis was advancing and that the only course of action would be to fit her for a back brace, and that she would remain in a brace until she stopped growing and major spinal surgery to insert metal rods into her back could be done. He then pulled out a form and had me sign it, saying that in order to make the brace, she’d have to have a mould done under general anaesthesia.
None of it was what I’d expected, and by the time my brain started to formulate some questions, we’d been hustled out of the exam room and a new patient had taken our place.
I was stunned. A back brace? That is a major development. And I know instinctively that she’s going to hate it. HATE it. And I have so many questions, such as what will the brace look like? What will it be made of? How many hours a day will she have to wear it? How will it work with her mickey button? Will it stop the scoliosis progressing? And why has the scoliosis suddenly begun to progress so quickly in the first place? I couldn’t believe that the doctor hadn’t told me anything apart from his course of action. And even if I had the presence of mind to ask all my questions during our brief appointment, I’m not sure he would have been the type to listen to my concerns and address how the brace is going to affect Lil Z’s day-to-day life. Because the impression he gave was that none of that mattered.
I’ve mentioned to a number of people how rude and unhelpful I found Ortho and every single one of them said that Orthopaedics has a reputation for poor people skills – focusing only on the solution to their particular problem.
One of Lil Z’s therapists sent me this, which kind of sums it up:
(if you missed the joke, the patient is dead, but he’s still focused only on the broken limb).
A few weeks later, Lil Z was scheduled to have the mould for her back done. I very grudgingly took her to the hospital for the procedure – after a last-minute hope that they wouldn’t be able to do it since her leg was still in a cast. The doctor was actually in the operating theatre when I carried Lil Z in for her anaesthetic – but he didn’t acknowledge me. It just made me angrier and more against the back brace.
Here’s the thing – public relations is important when you’re dealing with children and their parents. I’m sure that the Ortho doctor knows what he’s doing, but I want the information and evidence to reinforce it in my mind. Because at the end of the day, I am the one who will be dealing with the miserable child in the uncomfortable brace. And even more importantly, I am the one making a decision about the well-being and happiness of my daughter.
Let me give an example. Lil Z has been put on a new anti-epileptic drug called Topamax. It has all sorts of nasty side effects, including kidney stones and vision problems. I raised my concern about the side effects at Lil Z’s latest Neurology appointment. The Neurologist explained to me in detail why he thinks Topamax will work well for Lil Z’s seizures. And he discussed the risks of side effects from the medication and how he believes that the benefits will far outweigh the unlikely risk of a severe side effect. It made sense and I am now happy for Lil Z to remain on Topamax.
If the Ortho had taken the time to explain to me why a brace was important and how its benefits will outweigh her potential unhappiness, I would have accepted it. But by refusing to provide me with enough information or address my concerns, he’s made me dread the arrival of the brace.
Today we had an appointment with Lil Z’s new paediatrician. He is as lovely and as willing to take the time to discuss Lil Z’s issues as her previous one. I raised the issue of the back brace and how much I was dreading it with him. He acknowledged that Lil Z will HATE it. But he also told me about how if her scoliosis advances further, it will begin to affect her lungs and start to cause breathing difficulties. And if it worsens further, it could even affect her heart. I had no idea that scoliosis could be that serious. He also discussed how left unchecked, Lil Z would develop a greater and greater curve in her back, making it nearly impossible for her to use standard equipment like a standing frame or wheelchair. And that the longer we can keep her scoliosis in check, the longer we can avoid the surgery – which is only a good thing.
After our talk, I still don’t feel good about the brace. It is hard to make a decision to inflict something on Lil Z that will impact her happiness, when she already has a limited amount of happiness in her life (thanks mainly to the seizures). But, I now understand why it is important and will actually make a greater effort to ensure she stays in the brace as long as she will tolerate it.
See, a little PR goes a long way.