Keanu-Jay Brown was born with a rare life-threatening condition which means food goes into his lungs instead of his stomach. Photo / Supplied
Keanu-Jay Brown was born with a rare life-threatening condition which means food goes into his lungs instead of his stomach. Photo / Supplied
The family of a newborn baby who has already survived one operation on his liver are clinging to hope doctors outside New Zealand will be able to keep him alive after discovering a second life-threatening condition.
Baby Keanu-Jay was born with omphalocele - a condition where the baby is born with its organs sticking outside its belly button. His condition was discovered during pregnancy.
He underwent a successful operation to repair the omphalocele but just days later his family have been dealt a devastating blow.
The 8-day-old has been diagnosed with the extremely rare condition Type 4 Laryngeal Cleft, which means food goes into his lungs instead of his stomach due to an incomplete fusion of the tissue between the larynx and the oesophagus.
Keanu-Jay Brown was flown from Christchurch Womens Hospital to Auckland Starship Hospital last week in the hope doctors there could operate to fix the rare diagnosis.
However, after further scans, doctors gave the family the heartbreaking news that they believed his condition was unsurvivable due to it being the most severe they had ever seen.
The family of eight say they were told on Saturday to keep him comfortable until he died.
But his mother, Sam Ayers, and father, Josh Brown, are not ready to give up just yet and believe more can be done for their little fighter.
The Christchurch family has researched other options overseas where babies with the same condition had much better outcomes.
They have asked for doctors to give him nutrients so he can get bigger and are also getting a second opinion from the United Kingdom within the next few days.
Depending on the second opinion, they would then get prepared to take him overseas for urgent surgery.
Little Keanu-Jay Brown is surrounded by his family at Starship Hospital including his big brother Tyhna. Photo / Supplied
Keanu-Jay is breathing independently and his vitals are positive so far, Ayers said.
She said they had been prepared for the omphalocele which had been much more minor and easily corrected when he was two days old, but the laryngeal cleft diagnosis had come as a massive shock.
It was only discovered when nurses struggled to insert tubes down his throat.
"I don't think we've really taken it in. So much has been going on for us since he's been born. We've been told all of this and I don't think we've really had time to actually soak it in I suppose."
Ayers said they would keep pushing for their "little fighter".
Keanu's aunty, Rose Otene, has set up a Givealittle page to help the family seek medical advice and treatment overseas.
"We have also seen stories of it being repairable. And so many recommendations of doctors out of New Zealand who have more experience in this field."
Otene said her "heart breaks" for Keanu's parents and five siblings who were determined not to give up fighting for him.
"We are here to be his voice, fight this with him and to make sure he gets a fair chance at life. So in saying this we have created this Givealittle page to help gather some money in hope to fly him overseas or to get him any sort of help he needs."
