An Auckland couple is hoping for a medical miracle as the survival of their infant son, born with multiple congenital heart defects, desperately depends on an out-of-reach heart transplant.
Nine-month-old Titaha was born with "half a heart", according to his parents Sam and Rose, as the left side of his heart is largely underdeveloped. Starship Hospital staff have done as much as they can to keep the infant alive - but now, Titaha's life is dependent on a child's heart transplant, a procedure which is unavailable in New Zealand.
In an interview with Newshub, parents Sam and Rose said they were given an ultimatum whether or not to terminate the pregnancy when a number of defects were detected in the foetus. They decided to keep their baby, but the two knew from early on that the journey wouldn't be easy.
"It was really, really heartbreaking," the couple told Newshub.
"With the initial diagnosis, we were told surgery wasn't likely to be an option because he's on the worst end of the scale. There are procedures available for lots of the different ones he's got, but not for all of them."
Titaha's congenital heart defects (CHDs) include severe hypoplastic left heart syndrome - the underdevelopment of the left side of the heart; a double outlet right ventricle; subpulmonary stenosis; and severe left ventricular hypertrophy, to name a few. The child also suffers from transposition of the great arteries, a serious but rare defect in which the two main arteries leaving the heart are reversed.
Titaha's condition also includes dilated kidneys, two extra ribs and T5 butterfly vertebrae and recurrent chylothorax - an accumulation of lymphatic fluid in the space surrounding the lung. He has also experienced a pleural effusion leak of chyle fluid from his right lung, requiring incredibly painful chest drains.
"There's been a lot of surgeries," Sam said. "A lot. A lot of surgical procedures, cardiac catheterization, CT scans and open-heart surgery.
"When he was three-months-old, he was basically dying in our arms. Our surgeon and our cardiologist were away - another cardiologist stepped in and said, 'Something needs to happen now'. That was when he had his first open-heart surgery... which saved his life."
Early in Titaha's short life, Sam and Rose realised that a heart transplant could be the miracle they were hoping for, and sought advice from a leading Melbourne-based heart doctor. They were devastated to discover that New Zealand does not offer heart transplants for small children. Their hopes were dashed again when they were told that heart transplants for children with CHDs are also unavailable in Australia. They requested a second opinion from experts based in Boston - but the process has been long and drawn out.
Six months later, options to ensure Titaha's survival have mostly been exhausted. Sam and Rose are now desperately hoping their Givealittle page, on which they regularly document informative, detailed updates on Titaha and his condition, will raise the funds required to give their son a new heart.
"He needs a new heart. The cardiology team at Starship are amazing, they've done everything they know how to do. If we can travel to another country to get a transplant, we will. We need to try and fundraise to get that heart," Sam said tearfully. "The Givealittle page is definitely [very important]."
Sam and Rose, who have other children, are remaining strong for their family throughout the devastating ordeal. The two say their respective pasts, marred with difficulties, death and loss, have fortified their resilience and resolve as a couple. As a team, they find strength in each other.
"As loving parents, we need to do everything we can for our little baby and our other children. They mean so much to us," Sam said.
"We've learned some coping skills over the years. We've had a lot of difficulties in our pasts... we've learnt how to deal with grief and stressful situations calmly, to deal with what needs to be done in the best interests of our children."
Every day is special, whether or not the outcome is positive, Rose says, as they have been able to spend precious time with their little fighter.
"To be able to keep positive is so important, especially for the children - they need to see that. We're able to explain it to them so they can learn and embrace their little brother in a positive way. He's not going to get better by crying over him," Sam explained.
As an ambulance officer, Sam has taken it upon himself to try and discover a solution to his son's condition. Already armed with a solid understanding of normal heart function, the father has sketched pictures of Titaha's heart anatomy in a bid to decipher a potential remedy. His profession and background has also helped the couple feel more included in the decision-making by Titaha's medical team, "which is quite special", Sam says.
The two have remained heavily involved in their son's day-to-day needs since his birth, in an effort to maintain normal parenting roles.
"It's hard enough that he's in a hospital bed in intensive care, but we do as much of his care as we can ourselves, which surprised a lot of medical staff... bathing him, his feeds, his skincare, his nasal-gastric tube... we're capable of all of that," they explained.
To parents of babies with CHDs
Sam and Rose have nothing but praise for Heart Kids New Zealand, a foundation that provides practical and emotional support for families at every step of their heart journey, helping individuals and parents alike cope with the day-to-day difficulties of raising a child with CHDs.
"Get hold of the Heart Kids Foundation. They are awesome," the two suggested. "If you're gonna support one charity, it's them."
They also advise parents of a child with CHDs to document each stage of their journey - including numbers, names, concerns, appointments, research and advice - to keep track of trends and ensure that important information is to hand.
"We wrote detailed observations of his numbers daily - we could refer back to them when someone asked us important questions - for example, 'When did he start losing weight?' Well, we have the trend right here," Sam explained.
"It will also be good to read back on one day in the future. We did it for Titaha too, so maybe one day he can read back on his own book."
They also recommend parents to conduct their own research prior to any procedures, and begin investigating overseas options early.
"We still haven't given up, we're still trying to find a solution," Sam said.
"He's the sweetest little man, he doesn't deserve any of it. He's so brave... he's had a needle prick just about everyday to take blood. He's been the smiliest baby, all the nurses will say that. He's very popular and loved by a lot of people. He's very important to the world."
Titaha will be moved to ward 23B, the heart ward, of Starship Hospital's paediatric and congenital cardiology service this week.
"From there, we may go back to Kaitaia and wait until the end of his life," Rose said. "We don't know how long we've got left with our son.
"Our goal now is to stabilise our heart baby so we can take him home and love him better. After so long stuck in a hospital bed, we want Titaha to be able to sit by the river and listen to the birds, while we all wait for a miracle to save his life."
Money raised through Rose and Sam's Givealittle page will go towards Titaha's medical bills and equipment.