Jules's Story

13 Aug 2021

On Sunday, 31 January 2021 our beautiful baby girl, Willow Charlize Mallia, was born with love. Just like her big brother Xavier (3.5), she was brought into our world through a calm water-birth. She had dark hair, and toes just like her mum. We only got to spend 15 minutes with Willow before she passed away peacefully as we held her skin to skin.

She was diagnosed with Ventriculomegaly in utero, facing us with the unimaginable decision to terminate the pregnancy through the compassionate induction of labour at 23-weeks gestation, or continue with the pregnancy and face the devastating complications associated with her progressing diagnosis.

Termination for Medical Reasons (TFMR) is a term most families have never heard of before it impacts them directly. Within minutes of our first visit to the Fetal Medical Unit at 20 weeks, not only were we facing a serious diagnosis we had never heard of, and the prospect of an amniocentesis, but also the fact that our baby’s life or death was now in our hands.

In a seemingly normal pregnancy, Willow’s condition was the ultimate blindside. We had suffered a miscarriage in our first pregnancy, but had gone on to have a healthy pregnancy with Xavier, and now we were facing this decision that went against our values. In the end, after many tears shared with our specialist, we chose to deliver early with compassion and love, to prevent Willow suffering.

We could not have prepared for that heavy responsibility, and we were even more uncertain as to whether we could recover from it.

We are beyond grateful to have the ongoing support through genuine, experienced, compassionate counselling sessions, as well as online group support, phone and face-to-face services. We were also held in our grief by Red Nose’s Hospital to Home pilot program, and Living with Loss program, who helped in the journey of putting our lives back together. Without these services, I honestly don’t know how I ever would have found the strength to navigate this excruciating grief and loss.

When your baby dies, however it occurs, it changes you. Unless you have experienced it, it’s impossible to understand. We are often conditioned to think we must move on from grief and to be grateful for other things. Or that the timeline for our grief should be determined by how long we were pregnant or had our child.

With the support of Red Nose, we have learned that grief is as great as love. That the love we have for Willow will help us endure her loss throughout our lives. We found permission to live with our grief, to embrace our memories of Willow, to share her with others, and to accept compassionate support for our pain for as long as we need it.

We’re getting involved in Red Nose Day to ensure other families don’t have to go through this alone. Reading other people’s stories of loss through Red Nose’s channels has helped validate our experience and prepare us for what may lay ahead.

For me, sharing openly and truthfully is a powerful tool for healing. Helping myself and others find a safe space to break the stigma that still too often accompanies the death of a baby or child.

You can follow my Instagram page at @with_love_willow

 

Get involved

 

Follow Us!