'That moment haunts us': Mum's emotional plea after newborn's tragic death

The mother of a baby who died from an extremely rare disease has made an emotional plea to parents to trust their instincts.

On July 17, Australian Kristy Fiorini gave birth to baby Jordan, who was later diagnosed with Total Intestinal Aganglionosis (TIA).

TIA is characterised by a lack of nerve cells in the intestines, which prevents muscle movement and causes faeces to become blocked, obstructing the bowel.

Ms Fiorini first became worried when Jordan didn't make his first bowel movement in his first 48 hours.

Scans highlighted a blockage in his bowels, and three-day-old Jordan was quickly transferred to Melbourne's Royal Children's Hospital where he underwent a series of surgeries and biopsies.

Doctors then told Jordan's parents that the cause was TIA, which is fatal and has no known cure.

"That moment haunts us to be honest... at the point in time we were both just so shocked we didn't know what to say," Ms Fiorini said.

"When the surgeon walked out the door we just both broke down in tears. I'd never seen my husband cry before."

After eight weeks, Jordan developed an infection in his intestines, which spread to his bloodstream.

The parents were then given the difficult choice of taking their gravely ill baby home or keep him in hospital

Despite doctors not expecting Jordan to survive more than an hour away from hospital, Ms Fiorini took the chance and said he initially held up well.

But 10 days after leaving hospital, Jordan succumbed to his disease.

His mum wants other parents to trust their instincts if they suspect something is wrong with their babies' bowels and recognise "the importance of their first poo".

"Trust your maternal or paternal instincts - and if you think that something isn't right, follow it up."


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