'At peace and not in pain': Parents of baby boy who fought two rare conditions reflect on 'heartbreaking' loss

The parents of 11-day-old Keanu-Jay (pictured) have told Newshub of their devastating loss and offered advice for parents advocating for sick kids.
The parents of 11-day-old Keanu-Jay (pictured) have told Newshub of their devastating loss and offered advice for parents advocating for sick kids. Photo credit: Supplied.

Christchurch parents grieving the loss of their baby boy say he fought for as long and as hard as he could to survive a rare condition but after 11 days, his little heart grew too tired to keep beating. 

"Saying goodbye to your baby is the hardest thing in life," mum Sam Ayers told Newshub. 

 "We had to sit and hold him and gave him all the love in the world to leave with. He stared at us and gave his last breath. 

"He fought so hard to try to stay alive for us and himself but couldn't anymore."

Sam and her partner Josh Brown are "heartbroken" after losing Keanu-Jay. Newshub spoke to the Christchurch couple last week as they desperately tried everything to get him the medical treatment he needed but ultimately had to accept the prognosis that the complexities of his second rare condition were too substantial.

The condition - Type 4 Laryngeal Cleft - meant an incomplete fusion of the tissue between the larynx and the oesophagus was causing food to go into Keanu-Jay's lungs instead of his stomach. 

He had already made it out the other side of major surgery, needed due to a rare condition discovered during Sam's pregnancy - a stomach-wall defect named omphalocele which caused his liver to sit in a sack outside his belly button. 

His parents were told there was a chance the liver would retract back into his body during pregnancy - and it did by 80 percent.

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 the life-threatening Type 4 Laryngeal Cleft.

"It's a really rare condition throughout the world," his dad Josh told Newshub last week. "In New Zealand, it's inoperable because there are no doctors here who specialise in it."

The couple took Keanu-Jay to Auckland's Starship Hospital on August 11 with the hope he could be given the help he needed but Josh said they were told his condition was unsurvivable. 

Sam and Josh made attempts at seeking a second opinion from doctors familiar with the condition around the world, but as time went on, a decision was made to move him back to Christchurch where he could receive the same care. 

Their journey became more difficult when New Zealand went into its first day of COVID-19 lockdown on August 18 and the family had 48 hours to make it back, or face being stuck in Auckland. 

The family arrived back in Christchurch on August 19 but just two hours after getting off the Starship plane with him, doctors said his oxygen was going down and there were no options left. 

"We're just extremely disappointed and angry there was 'nothing' they could do. We believe there was absolutely something they just didn't want to take the risk. 

"But at least if something had been done for him in the 11 days he was fighting then he would still possibly be here with us today."

Sam said the only comfort is knowing that Keanu-Jay "is now at peace and not in pain". 

"I'm angry because no one in this world should be told there is nothing we can do for your baby. And we don't wish it upon anybody. 

"Going through it, he was doing so well we just never expected that on the 19th." 

Keanu-Jay's siblings were aware mum and dad were going through a tough time and understand their little brother is now in the sky with his uncle and Koro looking after him. 

 The family held a beautiful sendoff on August 23 in lockdown. 

 "Forever a fighter our Keanu-Jay. We are all just trying to come to terms with it. And it will take time. 

"We are so grateful for the beautiful memories we have with him and will love him forever and always." 

 Sam urges any parents trying to navigate difficult medical situations with children to "always have hope". 

 "Definitely never give up in any situation. Our children need our voices to be heard," she says. 

 A Givealittle page set up by Keanu-Jay's aunt has been updated to say money raised will now go towards funeral costs and other expenses like Keanu-Jay's unveiling memorial headstone. 

Sam told Newshub she wanted to say how appreciative the family is for so much support from the public through such difficult times. 

 "Everyone having hope and giving prayers and love to our baby and for the undeniable support we are truly thankful."