'It's hard knowing he won't grow up, go to school, and get married'

Lovey Grant and Dshay Tanirau are trying to stay positive about baby Kalais' prognosis. Photo / Supplied

Teenage parents Lovey Grant and Dshay Tanirau celebrated the birth of their son three weeks ago. But now they are preparing for his funeral.

The young couple, from Wellington, have been told by doctors at Auckland's Starship Hospital that their son, Kalais, has days to live.

"We are not giving up on our baby," Tanirau said. "We are trying to stay positive and hope he will heal."

Kalais, named after the Holden Calais car, was born on September 26 with several heart defects. He has left heart syndrome, which affects blood flow through the heart. He was also born with a hole in his heart and no left ventricle - the part of the organ which pumps oxygenated blood through the body.

"He needed three operations before he turned three years old," said Ari, Tanirau's step-mother.

"Last week they couldn't operate and they didn't anticipate him getting any better. They told us to go home and prepare baby for palliative care. It wasn't the outcome we were prepared for."

They have now returned to Wellington for Kalais' final days of life.

Grant, 16, and Tanirau, 18, met at boarding school and began their relationship two years ago. She went to Hukarere Girls' College and he went to Te Aute College in Hawke's Bay.

They fell in love and she got pregnant when she forgot to have her three-monthly "contraceptive jab".

Three-week-old Kalais has days to live. Photo / Supplied

"I was scared but excited when I found out I was having a baby," said Grant. She and her partner's parents were shocked by the unexpected pregnancy but "got over it", she said.

The young family are now living with Dshay's father, Leo and Ari.

"We were disappointed naturally but the idea grew on us, it was just something we had to come and accept," said Ari.

The parents found out about their baby's health problems in a scan five months into the pregnancy. Grant was referred to Wellington hospital where further scans showed the baby had a range of complex heart issues.

Termination wasn't an option for the young couple.

"We were terrified but we wanted to keep it," said Grant.

It was a difficult labour, lasting six days and ending with a Cesarean.

"He looked perfect, he was chubby, and weighed 9 pounds," said Tanirau, who was "stoked" when he held his son for the first time.

"I smiled at him and I cried. I was just happy he was here. He is such a beautiful baby. He looks like his mum. He's got my eyes and heaps of hair."

But Kalais' heart problems were immediately evident.

Kalais was born on September 26 with several heart defects. Photo / Supplied

Annie Cunningham, a former nurse and a family support worker for HeartKids Wellington - the charity supporting the family – said the baby was very pale and his hands were blue due to the lack of oxygen.

"He has been given sedatives if he becomes distressed and morphine if he is in pain and he's started on diuretics to reduce the fluid in his body to take the pressure off the heart," she said.

The doctors at Starship advised the family last week that Kalais was gravely ill and there was nothing more they could do for him.

The family are not giving up. They hope Kalais' heart will become stronger so he will be able to have surgery.

"We understand the medical conditions and know why he has come home but until baby shows us obvious signs he's ready to pass we are waiting for him to get better," said Ari.

For the past two weeks, friends and whanau have come to meet Kalais but this weekend it is immediate family only. He will be farewelled in Te Reinga, on the East Coast. The family want to set up a Give-a-little page to pay for funeral expenses.

"We want to thank our whanau and friends for their support - we weren't prepared for this," said Dshay.

The young couple are looking for jobs now and hope to try for another baby when they are older and "more settled".

But right now they want to spend every moment with their "bubba".

"It's hard knowing he won't grow up, go to school, and get married. Every day we tell him to be positive and stay strong. And while he is fighting every day we pray for him every night."