Ruby’s Journey Part 2

Hypopituitarism

A continuation of Ruby’s story with Hypopituitarism – by her mum, Marla.

After a very difficult start to life, our young daughter Ruby was diagnosed with Hypopituitarism at six weeks of age.  This means that Ruby does not produce thyroxine, cortisol or growth hormone and relies on multiple medications a day to keep her alive and thriving!

At the time of Ruby’s diagnosis, we had no idea about the significance of the pituitary gland, which we soon realised is literally the master gland of the body controlling many hormones essential to survival.  It was very scary and an incredibly steep learning curve as first-time parents – not only did we know little about the pituitary gland, but we also had to learn so much about Ruby and what to do in times of illness.  Because if not managed correctly, it could be life threatening.

We were so lucky to have a team of wonderful Endocrine nurses spend a lot of time with us in the early stages of Ruby’s diagnosis.  They provided information and resources, answered all our questions, provided training in administering medications and talked us through the emergency management plan for Ruby.  Not only did the endocrine nurses provide us with medical information, but they were also a major source of support and reassurance from a psychological perspective as well – they were our lifeline and we had a direct number for them, which I called many, many times for advice.

One thing I do remember from that time was thinking that Ruby’s medical team, and especially her Endocrine nurses, would be a big part of our lives and that Ruby would enjoy seeing them regularly, which is true to this day!  We love seeing Ruby’s Endocrine nurse and we speak to them regularly for advice and support – especially in times of illness.  It is a lifelong journey with the Endocrine team, and the support of an Endocrine nurse is essential.

Ruby is now five and thriving.  I’m so grateful for her Endocrine team for helping to make this amazing life possible for our happy and adventurous little girl!

To find out more about Ruby’s Story click here for Part 1.