'My healthy newborn wasn't feeding - hours later I was told to say goodbye'

“His only symptom was being fussy and not wanting to feed, but I never imagined taking him to hospital would end up like this,” the Brisbane mum reveals.

When Tanny welcomed her third child, Hayden, she couldn’t have asked for a smoother pregnancy and birth.

“He came via scheduled c-section at 41 weeks and we were sent home after just one night in hospital as we were both doing so well,” the Brisbane mum tells Kidspot.

On Hayden’s second day earthside, however, Tanny’s motherly instinct sensed all was not as it should be.

“We’d been home only four hours and it was about 11pm that night when he suddenly stopped feeding and became very fussy,” the 36-year-old says.

“He had latched well before that and he wouldn’t take the breast. He wanted to sleep through his feed schedule and I thought, ‘Oh, maybe he’s just being a newborn?’”

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Hayden had a smooth and simple birth before the unthinkable happened. Image: Supplied

Something wasn't right

Tanny’s attempts to feed Hayden through the night had failed, which led the concerned mum to rush him straight to hospital early the next morning.

“He looked completely normal, but him not wanting to take the breast or bottle made me think something wasn’t right. At the time, I didn’t think the worst at all, I was taking him just in case.”

Within just a couple of hours, Tanny and partner, Chris’ blissful family life was crushed by their baby boy’s terrifying fight for survival.

At three days old, Hayden went into cardiac arrest.

“It happened right in front of me,” Tanny remembers emotionally.

“It took them 18 minutes to bring him back [to life]. They had to revive him twice. I was screaming and crying, calling his name, begging him to open his eyes while I was on the floor from the pain of the caesarean.”

Doctors discovered Hayden’s ammonia levels had reached 1500. A healthy newborn’s levels are under 50.

“It became toxic to his bloodstream and it travelled to his brain and his organs, including his heart,” Tanny says.

“Even if he made it, he would suffer a brain injury.”

RELATED: Heart attack or cardiac arrest? Knowing the difference could save a life

At three days old, Hayden went into cardiac arrest. Images: Supplied

The devastating prognosis

Despite being revived, Hayden was far from being out of the woods. Heartbreakingly, Tanny and Chris were given a devastating prognosis.

“They told me to start making phone calls to my family and prepare for the worst because it looked like he wouldn’t make it through the night,” Tanny remembers of that traumatic day.

“50 per cent of babies would pass away within 24 to 72 hours of their first symptoms.”

Miraculously, Hayden pulled through, only to begin a much longer struggle for survival.

The baby boy was diagnosed with the rare genetic disorder, ornithine transcarbamylase deficiency (OTC), which meant every moment thereafter was touch and go until he could undergo a liver transplant.

“They said without the transplant, he won’t make it long, not past a year old,” Tanny says.

“He was a ticking time bomb, we were told - he wouldn’t be able to overcome another [medical] episode. Knowing he had a chance to survive brought us a lot of hope.”

Receiving that hopeful phone call 

After months of anxious waiting, Tanny and Chris received the call that would save their son’s life - a donor match had been found.

In July, 2024, four-month-old Hayden underwent a successful 12-hour surgery that provided the lifeline his family had been praying for.

“While I was waiting outside theatre, there was no one around me and suddenly I felt someone tapping my shoulder, comforting me,” the mum-of-three says.

“There was no one there and I had goosebumps from the feeling that maybe it was the donor’s presence.”

It’s now one-year post transplant, and Hayden’s child donor remains a constant presence in the family’s thoughts and hearts.

“We don’t know who they are, but we think of them everyday,” Tanny says.

“Every time I see Hayden, I see another child. They are still here, in my son. They changed our lives completely - we didn’t think he may make it to his first birthday and we got to celebrate it. They are carried in our hearts every day.”

Tanny is optimistic her beloved son will live until adulthood. Images: Supplied

RELATED: ‘I had a heart attack during childbirth and died on the table’

A new family tradition

Last year, Tanny’s family began the tradition of placing a bauble on their Christmas tree in honour of Hayden’ donor and placing a present underneath for them.

“I nearly lost my son and that nearly killed me,” she says, holding back tears.

“I can’t imagine how painful it was for someone else to lose their child. In their darkest time, they chose life and saved others.”

While the transplant cured the now 17-month-old of OTC, Hayden has since been diagnosed with global developmental delay. He is not not walking, talking or babbling yet, but with the help of NDIS early intervention, the toddler is undergoing every therapy possible to aid his progress.

“I live on hope, otherwise I wouldn't be able to go through what I have,” his stoic mum says.

Tanny is optimistic her beloved son will live until adulthood - but she is taking it all one day at a time.

“We know the longest living liver transplant patient is 40 years old, so we just hope that there may be better medicine to help him when he’s older,” she says.

“Now we celebrate every little step he takes - we call them ‘inch-stones’ not milestones. When he learned to clap, I cried tears of joy.”

More than anyone, Tanny now knows just how fragile life can be.

“If I didn’t trust my gut instinct, Hayden would have passed away at home the day after he was born. We are so lucky to have him.”

There are currently 138 Australians waiting for a liver transplant - a huge jump from 93 this time last year. DonateLife Week, from July 27 to August 3, is encouraging people to register as an organ and tissue donor at donatelife.gov.au or through their Medicare account.

Originally published as 'My healthy newborn wasn't feeding - hours later I was told to say goodbye'