Ruby’s story

A family of two adults, two young children and a baby are seated inside, they are smiling at the camera.

Written by Shari Gotch

Ruby’s story is filled with love, courage, bravery, and so much hope. Our story doesn’t have a happy ending, but it is a remarkable story and I feel fortunate to be sharing my journey and our connection with Very Special Kids. 

In 2013, I was pregnant with my third child, it was a healthy pregnancy and no different to the birth of my two other children, Harry and Charlie. When Ruby entered the world at the Epworth Freemasons Hospital in the very early hours of 1 March 2013, she was very calm and placid. We weren’t sure if that was due to her being the third child or perfect daughter.  

In her first 24 hours, Ruby had a massive seizure and was quickly transferred to the neonatal intensive care unit (NICU) at the nursing hospital. It was a challenging time. I had just given birth and next thing we knew our baby needed to be taken to another hospital without us.  

Ruby underwent extensive testing to find out what caused her seizure, but the doctors couldn’t find any answers. It wasn’t until two weeks before she passed that Ruby would be diagnosed with a rare genetic condition called DOOR syndrome.  

When we took our little girl home, we continued to question that one off seizure. We lived on a farm in regional Victoria and travelled to The Royal Children’s Hospital (RCH) to hopefully find some answers. In her first admission, Ruby stayed for five weeks. We discovered she had a profound bilateral hearing loss and would require medication to manage her condition and seizures. 

Image of an infant in a hospital crib. She in unwell with tubes and machines to help.As months passed, Ruby’s seizures continued. Her developmental delays were more prominent, as she didn’t reach the sitting up and rolling milestones, and her feeding became weaker. She was admitted to hospital a few more times, then, at nine months old, an uncontrollable 16-hour long seizure, put her on life-support in the Intensive Care Unit. Then we were told the words that is every parent’s worst nightmare, “We can’t try anything else; this is it.”  

This is when Brad and I were referred to Very Special Kids. We were living 24/7 at the hospital, so our Melbourne based Family Support Practitioner would visit us there. With his support, we discussed how we were going to tell our other children that Ruby was dying. Even as a couple, it was difficult to navigate and decide Ruby’s end-of-life care.  

When we learnt about the children’s hospice at Very Special Kids, we met with the staff and just knew this was the right place for Ruby. They had 24-hour nursing care and a little house on site for us to stay. Anyone who has little kids will understand having a two and three-year-old in ICU is your worst nightmare. There are chords everywhere and it’s really intense. We wanted a space where the five of us could just be together and enjoy our time with Ruby. 

When we arrived and Ruby’s life-support was removed, we weren’t sure what to expect. We were prepared that once they take the tubes out, that she may not breathe, and it could happen quickly. But somehow, our little girl kept breathing on her own, which was amazing. During that time, the five of us slept in one bed all together and it was just magical. It’s something I’ll never forget.  

After several days, Ruby was comfortable, still breathing and still able to feed. The Christmas holidays were around the corner, and Brad and I had a crazy idea, to give our family a beach holiday down on the Mornington Peninsula. It was a brave decision, but one we will never regret. Our three kids got to enjoy one family holiday altogether, which was amazing. 

Three children are lying on the a sofa, smiling at the camera.We went home to Echuca for Christmas and Ruby spent time with her brothers snuggling up on the couch. It was a very special time to remember. In her final days, Ruby celebrated her first Christmas, and she took her final breath on 27 December 2013, with us all at home. I believe she knew to get through Christmas, especially for her big brothers. She was stoic and fought for her life. And she continued her brave battle right to the very end. She was nothing short of remarkable. 

While Very Special Kids is not the group that you would choose to be part of, if you end up in that club, the level of support and services is second to none. Their Bereaved Parent Program is exceptional. The one thing that I love about Very Special Kids is that it not only offers support for your child with a life-limiting condition, but also for siblings and parents. Harry and Charlie have been involved in so many things and had so many opportunities as part of the sibling program, and that’s been important for them. We are eight years down the track, and still connected. 

Living in regional Victoria can be really challenging to access services. So, it is amazing that Very Special Kids can reach families here in regional Victoria. I had no idea how many other families around us are using the same services, so we’ve met some wonderful families who are travelling on a similar journey to ours. 

Although Ruby is not with us today, I know she is still reaching the hearts of many people and I feel unbelievably proud and honoured to be continuing her legacy.  

A family of two adults, two children and a baby are outdoors with trees in the background, they are laughing and smiling for the camera.