Mylah’s Story - Paediatric Palliative Care

The disease progresses

As the months passed, Mylah began having seizures, lost the ability to hold her head up and developed painful episodes of dystonia (involuntary muscle contractions). We were told that every illness could cause her to regress in the abilities she had. We tried our hardest to keep her safe and away from germs, but inevitably she caught a cold. Watching that happen was heartbreaking, but through it all Mylah continued to show us her beautiful and somewhat sassy personality. She loved music, books, animals, sunsets, discovering new foods, watching The Wiggles and being surrounded by her family. We realised that it had been a month or 2 since Mylah had laughed or cried, and she soon after lost her ability to swallow. These were telltale signs that Mylah’s disease was progressing. As Mylah’s condition changed, her medical team began talking with us about what support she would need moving forward. Mylah’s neurologist and paediatrician suggested referring her to paediatric palliative care, we were absolutely devastated.

Understanding palliative care

Like many people, we believed palliative care meant giving up or preparing for the end of her life. We weren’t ready to hear those words. We thought accepting a referral meant accepting defeat.

Looking back now, we wish Mylah had been referred much earlier.

Paediatric palliative care wasn’t about giving up on our daughter. It was about helping her live as comfortably as possible. From the moment we met the Palliative Care team, they wanted to know Mylah, not just her diagnosis. They listened to our concerns, helped us manage her symptoms both at home and in hospital, and focused on improving her comfort and quality of life.

As her condition became more complex, the team became an essential part of our lives.

Because Leigh syndrome is rare, many doctors had never cared for a child with the condition before. Having access to specialists who understood Mylah’s condition meant we always had someone to contact when her symptoms changed. They helped us decide whether she could safely stay at home when she was sick or if she needed to come into hospital, which gave us confidence and some reassurance during incredibly frightening times.

The occupational therapist and physiotherapist organised equipment that kept Mylah comfortable as her mobility changed. The music therapist brought joy into both our home and the hospital, and she went out of her way to learn Mylah’s favourite songs. Even when she became very unwell, Mylah’s eyes would light up, and her eyebrows would start dancing when she heard familiar music.

Care for all the family

The team cared for our whole family, not just Mylah. They gently guided us through conversations no parent ever wants to have and supported us to make decisions based on what was best for our daughter. Their honesty, compassion and kindness gave us the confidence to make some impossible decisions.

During Mylah’s final hospital admission, she unexpectedly went into respiratory arrest, she was intubated and transferred to the PICU. Another MRI of her brain showed significant progression of her disease.

Together with her doctors and the palliative care team, we made the heartbreaking decision to place a Do Not Resuscitate order on her care plan. It was the hardest decision we have ever made, but we knew that repeatedly resuscitating Mylah would only prolong her suffering.

After Mylah was extubated and put on a bipap machine to help with breathing, we treasured every moment we had with her. But the next day, Mylah’s condition suddenly deteriorated again. Her heart rate went through the roof, her oxygen levels dropped and her skin went mottled. Some doctors came into the room and told us that she was passing away, which despite all the conversations we had been having come as a shock, we thought we had more time.

Our family rushed to the hospital to say their goodbyes. We held Mylah close, sang to her, played her favourite music, painted our nails pink together and made hand and foot moulds.

Saying goodbye

At 1:38 am on 17 May 2025, Mylah died in our arms, surrounded by her family.

It felt like an out of body experience, absolutely surreal. It felt like a movie, like something that would happen to someone else, except it was happening to us. Our beautiful pride and joy, Mylah, had left us.

Our family finished saying their final goodbyes and we gave her a warm bath and dressed her. We laid next to Mylah until the sun came up. The hardest part was having to say goodbye to her at the lift down to the morgue. We were worried about her being alone, but unfortunately, we were told the morgue was rather full at the time. We were secretly relieved that she had friends down there.

Although Mylah’s life had ended, the care we received did not. Our palliative care social worker came in the middle of the night when she passed and guided us through the overwhelming days that followed, helping us understand what to expect and supporting us as we planned Mylah’s funeral.

During Mylah’s funeral, her music therapist played her favourite Wiggles song ‘Rock a Bye Your Bear’ as she was lowered into the ground. There was an unexpected delay because the grave needed to be dug a little wider.

Through our tears, we found ourselves laughing.

We said it was Mylah’s cheeky way of telling us she wasn’t ready to go while her favourite song was still playing.

A year on

More than a year has passed since we lost our beautiful girl.

We still have contact with members of the paediatric palliative care team and continue to receive support through grief counselling. Their care didn’t stop when Mylah died, they have continued to walk alongside us through our grief.

Before our journey, we believed paediatric palliative care meant the end.

Now we know it means so much more.

It means expert symptom management. It means honesty delivered with compassion when making difficult decisions. It means helping your child experience comfort, joy and dignity, no matter how short their lives may be. Most importantly, it means caring for the whole family before, during and after the death of a child.

We will be forever grateful that Mylah had that care.

Mylah filled our lives with more love than we ever thought was humanly possible. By sharing her story, we hope that other families know they don’t have to walk this journey alone either, it takes a village. While we miss Mylah every single day and often wonder who she would have grown up to be, we hold tightly to the belief that love is stronger than loss.

Mylah touched so many people’s lives in her short 15 months here on earth and we feel her presence in the most unexpected and beautiful ways. Those little signs from heaven and moments bring us comfort when we need it most.

We will continue to honour Mylah and include her in everything we do for the rest of our lives.

Mylah's Story

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