Remembering Ruby

In 2013, Shari and Brad were pregnant with their third child. It was a healthy pregnancy and no different to the birth of their two other children, Harry and Charlie.

But in her first 24 hours, Ruby had a massive seizure and was quickly transferred to the neonatal intensive care unit at the nursing hospital. 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 seizure put her on life support.

This is when Brad and Shari were referred to Very Special Kids.

Shari shared,

“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.

“Living in regional Victoria can be really challenging to access services. So, it is amazing that Very Special Kids can reach families here. 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.”

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.