Honouring Lily

Written by Priyanka Saha

Will and I were like any first-time parents, we eagerly waiting for the birth of our baby girl. We had decorated the nursery and I couldn’t wait to hold her in my arms. But at 36 weeks, after a routine sizing scan, we were given the news we never could have imagined. The doctor told us there was a problem with our baby’s brain development, and at best, she wouldn’t live past 2 years of age.

Nothing can prepare you for being told that your child is going to die. Shock, grief, love, fear, despair, helplessness, and deep sadness. It was completely overwhelming.

Lily was diagnosed with Miller-Dieker syndrome. An extremely rare genetic disease and there are only two cases per year in Australia. We just wanted to make every second count with Lily, we wanted her to be with us at home for as long as possible.

That’s when we were connected to Very Special Kids. It was comforting to know we had options and we could get respite and support from Very Special Kids if we needed it. In such an unknown time, knowing where you can turn to for support, means so much.

In the end, Lily stayed with us the entire time, she died in our arms and didn’t go to Very Special Kids until the day after she died. Words can’t describe this heartbreaking time, the hospice team helped to make things a little easier. They gave us use of a special room and cuddle cot where Lily stayed until it was time for her funeral.

We could stay overnight too or visit her at any time. This was a precious gift, the gift of some extra time to say goodbye and allowed our family to come and say their goodbyes too. since then, we continued to be supported by their family support and counselling services. Very Special Kids role in the health system is vital for families going through the trauma of parenting a terminally-sick child and ultimately losing a child. They provide a calm and caring environment, free-of-charge, for families who already have so many medical expenses and challenges.

Their ongoing bereavement support is also critical in helping families cope with the loss and to manage their mental health in the days, and years, after experiencing child loss. It is so comforting for me to know I have a counsellor, who specializes in grief and child loss, whenever I need it.

You can help Very Special Kids provide essential services such as end-of-life care by donating here.