'They can't find a heart small enough.' 3yo Taylor has been on the transplant list for two years.

All Dianne Hicks wants for her granddaughter Taylor is to be able to take her home to the country and let her play in the dirt. Taylor is three, and needs a heart transplant. She’s lived most of her life inside the sterile walls of a hospital.

“I put her in a sandpit over at the hospital one day and she just froze,” Hicks tells Mamamia. “She just sat there with her hands in the air. She did not move, did not know what to do.”

Hicks and Taylor are from the country town of Robinvale in Victoria. But while they’re waiting for a suitable donor heart, they have to stay in Melbourne, because they can’t be too far away from a transplant team. And because Taylor weighs just 10kg, it’s hard to find a heart that’s small enough for her.

“If we don’t get a heart, I don’t know,” Hicks says. “Taylor’s very high risk. She can just go down in a matter of hours. There’s no warning, no nothing.”

Hicks, who has been Taylor’s primary carer since she was born, noticed there was something seriously wrong with her when she was two months old.

“She used to scream, this unmerciful screaming. So I took her up to the hospital in Mildura, and they checked her over and they couldn’t find anything wrong. I said, ‘I’m not taking her home, because there is something seriously wrong with her.’ So they grudgingly said they would admit me overnight with her.

“At one o’clock she made these strange noises, so I jumped out of bed and picked her up, and as I picked her up, she arrested in my arms.”

The medical staff swung into action. Taylor was transferred to Melbourne, where her heart stopped again and she was put onto life support. But she fought her way back. She was diagnosed with an abnormal heart rhythm, but with the help of medication, she was eventually well enough to go home to Robinvale.

“She was home for her first birthday,” Hicks says. “She was healthy.”

Not long afterwards, the medication Taylor had been taking was no longer available. She went back to hospital to try new medication, and within hours, her heart stopped again. She ended up back in intensive care. Hicks and her paramedic husband Colin were there with her.

“We were told that if she didn’t improve by the Monday, we were going to have to turn her machine off,” Hicks remembers. “That was on a Friday.

“It’s like someone’s wrenched your heart out. It was just like, ‘How do I let them turn that machine off? How do I watch my daughter just pass away in front of me?’

“My husband was so devastated. It totally wrecked him, because she’s Daddy’s girl. All he could do was cry. I couldn’t cry because I thought, ‘One of us has to stay strong to take in what the doctors are telling us.’”

Palliative care became involved.

“They took her footprint and handprint and had them put onto jewellery for me. They arranged for a photographer to come and take photos.”

On the Sunday, the medical staff tried shocking Taylor again. Even though it hadn’t worked before, this time, it did.

“Col’s crying, I’m crying and then the nurse started crying,” Hicks remembers. “We’re all huddled together crying because we didn’t have to turn the machine off.”

Sadly, while Taylor was being put on life support, she had gone for too long without oxygen and had suffered a stroke. She was left with cerebral palsy.

“She can’t walk independently. She’s either got to hang on to you or hang onto a walker. She hasn’t got much speech. But she’s a very happy child. She just smiles at everybody.”

Hicks and Taylor have now been in Melbourne for two-and-a-half years, waiting for a transplant. It’s been tough on the family back in Robinvale. Hicks has three children, four foster children who she considers her children, and 18 grandchildren, with a great-grandchild on the way.

It’s been tough on Hicks too, with her husband having to keep working and only being able to visit Melbourne on his days off. But palliative care has continued to help out Hicks.

“They were there for me when I was by myself. They come to meetings with me so that they can listen, because when I get a bit upset, I miss everything the doctors are saying.

“They just know the right words to say. I have to have them in my life, because if anything happened to Taylor, I don’t know how I would cope. I need them to guide me through it.”

But Hicks is hopeful that Taylor will have a transplant and will be able to go home, one day.

“I really just want her to experience normal life, being outside on the grass, playing in the dirt, going to playgroups, kinder and all that. I just want her to have a chance to be normal, and not be in that hospital.”

Hicks knows that if Taylor did manage to get a donor heart, it probably wouldn’t last her more than 10 years.

“But I’d like her to have more time, to make memories, have a childhood. She’s fought to stay here twice when we didn’t think she would. A bit of a break for her would be nice.

“She’s got a lot of challenges ahead, but with her strong determination, we’ll get through them. There’s people worse off than us. We’re lucky.”

National Palliative Care Week runs from May 19-25. For more stories, visit the Moments That Matter website.