Matilda's story

When Alex and Isaac discovered they were pregnant they were shocked, and their lives were turned upside down, in the best possible way. The young couple who loved travelling, and lived in a yurt perched on the rolling hills of Byron Bay, were soon making excited plans for what the next phase of their life together would look like, loving every second of pregnancy and the bond it had strengthened between them.

At their 20-week scan, the parents-to-be were told that there was something “not quite right” with Matilda’s heart and were referred to a tertiary hospital for further investigation. What they discovered changed the course of their pregnancy, and their life, but the family of three were guided by love and intuition as they moved forward, which are the same principles that guide them today.

"Matilda was diagnosed with a rare heart condition. So rare that there are only two children a year, in the whole of Queensland, that will have it. We were expecting something like a hole in her heart, something they could operate and fix, but we never expected this,” says Isaac.

The rare diagnosis meant that Matilda’s prognosis was unclear. They were given three likely scenarios: Matilda would not make it to full term; Matilda would make it to full term, but not survive her first 24 hours; or Matilda would make it to full term, but only live for about four months.

Alex and Isaac received incredible support from their medical team, who researched every possible way to treat Matilda’s diagnosis, but no matter what decision they made, it was clear that Matilda’s life was going to be limited to days, weeks or if they were incredibly lucky, a few months.

Isaac recalls that at the time of her diagnosis, it was the quality of life that Matilda would have that underpinned their decision making.

“If Matilda was going to die regardless of which option we picked, we wanted her to live a full life, doing the things we love – like going to the beach, camping and bushwalking – before she left us.

For the rest of their pregnancy Alex and Isaac retreated from the world, spending time at the beach and in the bush, talking to, connecting with, and loving their baby girl. Alex recalls so many amazing moments during their pregnancy, like finding out that Matilda was a girl, when both families are full of boys. “We had so many emotions to work through before she was born, but while she was in my body I was able to protect her, talk to her, tell her – I’ve got you.”

About a week before giving birth the couple were introduced to Hummingbird House, where they explored their palliative care options for Matilda. Isaac recalls, “It was hard being in a hospice, because it was like acknowledging that our baby was going to pass away, but we were reassured by how warm and welcoming it was.”

Matilda’s birth in November 2019 was far removed from the home birth the couple had planned. “It was peaceful and quiet in the room, but you could feel the tension, because no one knew what to expect,” recalls Alex.

She also recalls how long the first few minutes after Matilda’s birth felt, while she waited for her baby to be placed in her arms, where she happily remains today, against all odds.

Today, the loud and chatty one year old continues to surprise her parents and her medical team as she lives every day of her life to the fullest. While no one knows how much time Matilda has ahead of her, the family of three continue to stay true to their commitment to living their best life, even completing a 25,000km road trip to the furthest parts of Australia together.

“We all hold expectations about how life is going to go, but now that we’re in this situation we live our life differently. Having a palliative child is joyous and incredible. We have this beautiful child that lights up our life. Life may not be simple or easy, but it’s a miracle.

Alex, Isaac and Matilda may not know what the future holds, but they do, Alex muses, know this, “it doesn’t matter how long you are parents for – you are still parents, and as parents our job is to love, support and guide our children, even if we have no control over how long we have them for. It hits us sometimes that Matilda chose us, and we’re here to support her journey. She’s Matilda, and we wouldn’t trade her for any other child out there.”