A Christchurch couple says they're not ready to give up on their nine-day-old baby after being told by doctors their newborn son Keanu-Jay's condition is untreatable, as there are no local specialists who can help.
Parents Josh Brown and Sam Ayers are desperately trying to find help for him by contacting hospitals overseas in hopes to find a doctor who is familiar with cases like their son's.
Keanu-Jay has already made it out the other side of a major surgery after being born with another rare condition - a stomach-wall defect - omphalocele.
During Sam's pregnancy, Keanu-Jay's liver was found to be sitting outside his tummy in a sack in front of his belly button, but the parents were told there was a chance it would retract back into his body during pregnancy.
The liver did retract 80 percent, and when he was born on August 8, doctors were able to quickly repair the organ within the same day. But the parents were then left absolutely gutted to be hit with an unexpected second diagnosis of Type 4 Laryngeal Cleft.
An incomplete fusion of the tissue between the larynx and the oesophagus means food goes into his lungs instead of his stomach - and it is life-threatening.
"It's a really rare condition throughout the world," his dad Josh told Newshub. "In New Zealand, it's inoperable because there are no doctors here who specialise in it."
The couple says the past week and a half has been tough after arriving in Auckland on August 11 with hopes their baby can be given the help he needs.
"In the last couple of days, we've been pretty much told his condition is unsurvivable and to get ready for him to pass away and be around him. But we didn't really want to take that as the end of the journey for us so we've reached out to doctors around the world."
Keanu-Joy's mum Sam said the pair are struggling to come to grips with the prognosis.
"We're devastated being told obviously he's been deemed inoperable," she told Newshub. "We feel like they've just given up and we didn't have an option on how to get him treated."
The family has reached out to specialists in Australia, London, and New York to get second opinions about what can be done to save Keanu-Jay's life. Their best hope is to get to Australia for treatment and they are expecting an update on Wednesday afternoon around their options.
They know every minute counts.
"We've got a really big journey ahead of us," Josh told Newshub.
"One of his breathing tubes was letting secretion through into his lungs, so his lungs are starting to turn gluey, meaning they stick every time he breathes in or breathes out. We found out that's another really serious matter that's happening right now."
Keanu-Joy has five siblings who know that something isn't right with their little brother.
"We've always stuck together as a family so they are at an age where they know something is wrong with mum and dad. They are picking up with what's going on with baby at the moment."
As they try and navigate the complexity of the situation, Keanu-Jay's mum says it's hard to fight the frustration that more can't be done.
"We've just been trying to find a way to get him help as much as we can in the time he's got left."
She says they are eagerly awaiting the second opinion they expect to hear so they can figure out their next steps.
"If we get told that they can't help then we are just going to try and find another opinion," Sam explained.
"We're not ready to give up and just get him comfortable to pass away. We believe that he can be helped and it is definitely survivable, we've heard so many stories that it is from overseas so we're not going to give up."
A Givealittle page has been set up by Keanu-Jay's aunt, Rose Otene, to raise funds for costs it will take to fly him overseas or to get him any sort of help he urgently needs.
"We are going to try to keep him as strong as possible whilst we keep fighting to raise money in hope to save his life," she said.
"We are here to be his voice, fight this with him, and to make sure he gets a fair chance at life."
