My story

I am now 13 years old. My parents decided to have IVF (no reason as far as i’m aware.) and became pregnant with me. Was due on Christmas day (December 25) but was born extremely premature, at 29 weeks, I was born on October 11, 2010. Was in hospital in NICU (neonatal intensive care unit) for around 4 months, in very bad shape but eventually went home on oxygen. When I was 3, we moved to Tasmania for my dad’s work and travelled a bit around the state but I would just keep getting sick with colds, upper respiratory infections and bronchitis and things like that, and every time I got sick it would turn into a hospital visit for at least a day and sometimes a night or 2. But no doctors seemed to want to look into it, as ‘most kids are just sick like that a lot’. But when one of my regulars was away, we had a different person for our appointment and asked my parents whether they’d ever looked into my height, and that started all of the testing and appointments. I had an appointment at the Monash Children’s Hospital in Melbourne every 3 months so would pack up some things and go over to Melbourne every 3 months on a ferry or plane. I distinctly remember 1 test where I was made to run as fast and for as long as possible on a treadmill at the hospital so they could ‘see how my body reacted to stress’. My parents extremely disliked that man, for mostly that test, as it was very hard for me and always found it hard to walk the rest of that day. Something else they did according to my parents that I didn’t remember was when they were doing something with my glucose levels I think? My parents can’t remember exact details but I had to drink this stuff that progressively got weaker or stronger or something, and I couldn’t eat anything. They said that was another one of their ‘horrible’ tests as I went pale and was throwing up and stuff. They also did multiple MRIs, one when I was 6ish, I think, and had to use anaesthesia in the form of a gas to put me to sleep as I moved too much. It was only about the age of 6-7 after 3 febrile convulsions (seizures that are moderately common in children) and that MRI that they found out I had an ectopic posterior pituitary gland, the part of your brain which controls certain hormone releases. Turns out I was deficient in many hormones such as T4, adrenaline, growth hormone and iron. I also had chronic lung disease but I have now grown out of it. I have 5 1/2 tablets a day at the moment, which will increase as I get older, and have an injection in my thigh once a week for the growth stuff. My parents call me an ‘old soul’ as I was never particularly into sports or active stuff. I love reading books and learning about my conditions and my past. Please, if anyone reading this is a doctor, let me know your thoughts and opinions as to what they were doing. Thanks for reading!