Getting doctors to listen to you 101

Twenty-two years ago, my daughter had a 12-hour operation and afterwards, kicked out her morphine drip and had a massive spike in her temperature. They wanted to put her into Intensive Care. I said that “She needs to sleep. She needs to sleep and her temp will go down. Just let her sleep.” She slept for 18 hours straight and when she woke, the temp was gone. I knew what she needed, I knew that sleep heals her. It always has.

A few months afterwards, my daughter’s paediatrician asked me to speak to a group of final year medical students about the importance of listening to parents. No one knows your child as you do, and they need you to advocate for them when they are small and without words or power.

At the time I remember thinking that I could categorise these students into their future specialities. The handsome jocks sitting at the back, who no doubt would end up in orthopaedics, fixing overpaid sportsmen’s knees for a living. The women and men, who looked like they would be lovely GP’s, and those at the front who listened closely, who would probably end up working with children.

I talked about listening to mother and father’s but mostly mother’s because we know everything our child will do and not do when they’re sick. Listen to us, I demanded of them, we know what isn’t normal in our children. Don’t brush us off. Listen, please. You know a lot about medicine, we know everything about how our child behaves, eats, sleeps, plays.

Now, after 16 years of questioning my other child’s health, demanding more answers than ‘someone has to be at the other end of the normal range’, I told the doctors in the Emergency Department that we need more than bandaids. After the third hospitalisation in about six weeks, we said enough. Sort this out. I have seen countless doctors and had tests and still, nothing is clear. Give us some help to find out what is going on.

Yesterday, my brother, who has faced and recovered from a Stage 4 rare cancer diagnosis, said to me that this is the problem with the middle of medicine. No one talks to each other. No one calls the other doctor and the mother or father and sits down and looks for the patterns. I knew there was a pattern but I am not qualified to understand it but I trusted that it was happening. I said I wouldn’t be leaving till they listened to us. It was less Terms of Endearment than that but it had a touch of Lorenzo’s Oil! We want to know, dammit!

With five different specialist doctors in the cubicle, my GP’s office sending through every old test my kid had ever had and a series of questions that were so certain and validating, we realised this wasn’t in our imaginations. It is happening. It isn’t normal. We are were listened to. Yes, there is a pattern. Yes it’s hard to diagnose. Yes, something is wrong. Yes, we can help you. Let’s do every test known to man, and see what comes up.

So now we wait for the final diagnosis and while it is disappointing it has taken so long to find out, and so much stress and illness in between, we are on our way to better. Apparently this illness doesn’t usually get discovered out until about 40, so we are way ahead of the curve in that way and it is manageable and will improve my kid’s life immeasurably which is all I wanted in the first place.

We are tired. We are shattered but we have some sort of path forward. Thank you to Dora, Fiona, Andy, Rach, Jonah, Fred, Sarah, and Anna for your love and friendship. We are grateful.