Christchurch baby Keanu-Jay Brown battling rare condition dies

Keanu-Jay Brown, who was born with a rare life-threatening condition which meant food went into his lungs instead of his stomach, has died. Photo / Supplied

The Christchurch newborn battling an extremely rare condition discovered when he was just a few days old has died.

Keanu-Jay Brown was born with omphalocele - a condition discovered during pregnancy where part of his liver was born on the outside of his belly button.

The condition meant food went into his lungs instead of his stomach because of an incomplete fusion of the tissue between the larynx and the oesophagus.

His parents Sam Ayers and Josh Brown told the Herald last week after being told by Starship Hospital last week nothing more could be done, they were determined to get a second opinion from the UK.

While waiting on that expert advice, the country went into lockdown and the family returned to Christchurch to be closer to family.

Brown said they had been told Christchurch Hospital could provide Keanu-Jay the same support as Starship.

But after a successful operation two days after he was born to return his organ back inside him, his parents were hit with more devastating news that Keanu-Jay had the extremely rare condition Type 4 Laryngeal Cleft.

But during the flight back to Christchurch on Friday Keanu-Jay's oxygen levels dropped so low the 11-day-old couldn't recover from it despite the hard work of the doctors onboard.

"A very sad ending to his fight for life. He was such a warrior."

The death of their "sweet baby boy Keanu" had been very hard on the family, but they were being well supported through the tough time, Brown said.

The family was also grateful to be able to have a service at their home for him on Sunday.

"Keanu had a very nice send-off with all his siblings and close family around him."

His mother Sam Ayers told the Herald last week they weren't ready to give up on him and believed more could be done for their little fighter.

While the family learnt during pregnancy that Keanu-Jay had omphalocele, the life-threatening type 4 laryngeal cleft had come as a shock just a few days after he was born.

His parents had been told by doctors at Starship Hospital last week it was the worst case they had ever seen and to prepare for the worst.

• A Givealittle page has so far raised more $12,000 to help him in his fight and is now being used on his funeral and supporting his family as they grieve.