'We feel her around us', Barrack Heights parents heartbreak after baby girl's sudden death

Heidi Smith passed away just over a week ago. Pictures: Supplied

Heidi Smith passed away just over a week ago. Pictures: Supplied

Little Heidi Smith had "so much fight in her" says her grieving mother, yet she didn't get the chance to battle the rare and aggressive brain cancer that was diagnosed just last month.

By mid-June, the 14-month-old had undergone surgery and was just a few weeks into an expected 12-month chemotherapy regimen when a new threat emerged.

An infection came out of nowhere - and with her immune system compromised by the cancer treatment, the NSW Shellharbour girl had little chance to fight it. Her body went into septic shock, shutting down her organs and leading to her death on June 19.

Her parents, Stacy Douch and Tom Smith, are heartbroken yet want to pay tribute to their brave little girl, and thank the staff at Sydney Children's Hospital at Randwick who cared so well for her in those last days.

Ms Douch said Heidi went through so much in her short life - born with spina bifida she'd only just undergone spinal surgery in March when a range of concerning symptoms led to further tests and scans.

Stacy with her brave little girl.

Stacy with her brave little girl.

"She had so much fight in her, but she didn't even get the chance to fight," Ms Douch said. "All the odds were stacked against her."

The first round of chemo was tough on Heidi, but results looked promising. However she then started to go downhill and was transferred back to a high care ward for closer observation.

Suffering from mucositis - an adverse effect of chemo which causes sores and bleeding in the mouth - she then started to have difficulties breathing and her stomach was bloated and hard.

"She was moved to the intensive care unit, and the doctors discovered she had an infection - she was septic," Ms Douch said. "She was struggling to breath and was just inconsolable, and scared."

Heidi was intubated, but her body couldn't fight the infection.

"Everything that could have gone wrong with her little body just did, so quickly," Ms Douch said.

With her father Tom.

With her father Tom.

"We had a discussion with the team and realised she just wasn't going to make it.

"We just wanted to hold her - we didn't want her dying on that table with all the tubes and leads, with all the drugs being pumped into her."

The staff's efforts first to try and save her, and then in her last days, meant the couple was able to "get some sort of closure", Ms Douch said.

"On that last day we sat with her and talked to her, telling her how much we loved her and how brave she was," she said.

"Tom had his guitar and played her music and sang her songs, the music therapist came and joined in and took a recording of her heartbeat.

"She had her teddies and we put pictures up around the room, and the play therapist came and took her handprints on a canvas.

"There was so much love and energy in that room - everyone could feel it."

The little girl left a lasting impression on everyone she met due to her sweet nature, her mother says.

The little girl left a lasting impression on everyone she met due to her sweet nature, her mother says.

When Heidi's stats started dropping, staff quickly removed leads and drains and laid her in her parents' arms.

"Once we were ready they took the breathing tube out and we just held her and talked to her as she took her last breaths," Ms Douch said. "We told her to come back and visit us - that we'd be paying attention."

Now the couple - who also have a five-year-old daughter Myah - say they feel her presence all the time, and know she's at peace.

"She's everywhere we look," Ms Douch said. "Even the little things - she'd just light up when she saw birds, so every time we see a little bird, we smile. We feel her around us."

This story 'We feel her around us': parents heartbreak after baby girl's sudden death first appeared on Illawarra Mercury.