Whaimanawa is a poster boy for Heart Kids awareness week. Photo / Jason Oxenham
Whaimanawa is a poster boy for Heart Kids awareness week. Photo / Jason Oxenham
Every week in New Zealand 12 babies are born with a heart defect. Every year up to 60 children die.
The number one cause of death for infants and newborns is a congenital heart defect - there is no prevention or cure.
Every year over 600 major heart surgeries are performed on newborns and children.
The Heart Kids charity provides support for children and families around the country from when the heart condition is diagnosed and throughout life. They call them Brave Hearts.
Its awareness week starts tomorrow with fundraising events around the country. Volunteers will be collecting on the streets on Friday and Saturday.
He can't breathe or eat unassisted, walk or talk. But the Auckland boy - who the family call Zheng Zheng which means brave warrior - has his own way of communicating. When he is choking or struggling to breathe his tracheotomy makes a gurgling sound like a kettle about to boil.
When his mother Yanan leans over to kiss him he screws up his face and when he bites her, he laughs hysterically.
Yanan, 39, and her husband Richard, 40, waited nine years for their son Zheng Zheng after several miscarriages. When she fell pregnant with her son she took three home pregnancy tests to make sure she was.
Twenty weeks into her pregnancy scans revealed Zheng Zheng had Tetralogy of Fallot, which is a hole in the heart, and narrow vessels and a blockage in the flow of blood from the right ventricle into the lungs.
Devastated her unborn child was sick, childcare worker Yanan was desperate to have the pregnancy terminated. She didn't want her newborn to have surgery in case it failed. Yanan and Richard said they didn't want to carry that "burden" for the rest their lives.
Zheng Zheng with his Mr. T hair.
"I felt I was in paradise then went straight to hell," Yanan says.
"I asked God 'Why does my son have to suffer? Why do you torture me and my husband? Why so many families enjoy their lives and not us?' I wanted to remove this baby. He was like car with a broken engine and without a heart people can't survive."
But Richard, who Yanan affectionately calls Daddy, refused to terminate. The travel consultant had confidence the doctors could fix his son's heart. He gave Yanan an ultimatum.
"Daddy says 'He is my son. If you don't' want this baby we won't have any more children. I don't want to stay in this country and have this memory'." she says.
On May 14 last year Zheng Zheng was born at 5am after 13 hours of labour.
"It was very painful birth," says Yanan. "He was so tiny and weighed 2.6kg. The first time I saw him he was very ugly and I thought 'Oh my god, he's not my son'. Because Daddy's not ugly. I am not ugly so I asked 'Why are you so ugly? Are you sure you are my son?' But we were both so happy we had a boy."
The couple's joy turned to grief when further tests revealed their newborn also had Tracheoesophageal Fistula - a rare condition where the oesophagus and trachea are abnormally connected.
Zheng Zheng has just turned 1. Photo / Dean Purcell
Before Yanan had a chance to bond with Zheng Zheng he was whisked away for an operation.
"The day he was born I didn't want to see him or touch him - he had so many tubes in him it hurt me too much," Yanan says.
Zheng Zheng has a tracheotomy to help him breathe and to stop him from turning blue. He dribbles and coughs constantly. He can't be left alone for a second, his mother says.
"As soon as we hear noise we have to drain him - if there is too much fluid it needs to be sucked out - otherwise he choke."
Zheng Zheng has stayed every night since he was born at Starship Hospital and one of his parents sleeps by his bedside. It's unclear when he will ever go home.
Yanan suffered from post-natal depression and shied away from friends and family. She felt she had "failed" as a mother.
"Before baby arrived we had the perfect life, a new house, good jobs and we travelled a lot. But then he arrived like this and I didn't want people to pity me. Chinese people don't like to tell people bad things- it's bad luck."
Zheng Zheng has never spent a night at home due to a range of heart problems. Photo / Dean Purcell
Yanan sunk into deeper depression and wanted to end her life.
"During the first six months I wanted to kill myself every day. I kept crying and thinking my son is not meant to be here. I am not meant to be here anymore. I had enough. I didn't expect this and I don't want the responsibility. Every day is torture."
But it was the company of strangers Yanan relied upon. Heart Kids have always been there.
"Sometime it gets very lonely - Nana Marie and Katia from Heart Kids are so kind. They visit Zheng Zheng two times a week so I can have a break. They bring me coffees, and help with petrol vouchers. I am very thankful to them."
Two weeks ago Zheng Zheng's parents took him back to their West Harbour home for a few hours on his first birthday. There was no party, no friends and a cake with no candles – not that he could blow them out anyway. But his beaming smile suggests he's happy to be home.
"Zheng Zheng is my smiley piglet - he smiles even when he is sick," his mother says.
"He is playful and cute but I worry about his future. When he is sick I can't bear to be near him but I can't bear to be away from him either. Every day Daddy says, 'Do you still want him?'. I say 'No I don't'. But every morning I would say 'Come on let's go'."
'I'd love to see him have a family'
Whaimanawa with Mum Stacey and Dad Chris. Photo / Jason Oxenham
On a crisp autumnal morning Whaimanawa Morunga is chasing his mates around the school yard dressed in a Spiderman T-shirt and shorts. Like most 5 year olds he doesn't feel the cold. But if he catches a cold it could be the end of his play and his life.
Whaimanawa's parents Stacey, 38, and Chris, 40, from Manurewa dreamed of having a big family. After their triplets Teina, Niwa and Kaitiaki, aged 9, were born - they wanted "one more" baby before they packed up their baby stuff for good.
At 20 weeks Stacey's scan revealed her unborn baby had a congenital heart defect- pulmonary Atresia (an undeveloped pulmonary valve) and hyperplastic right heart syndrome which causes inadequate blood flow to the lungs.
Stacey faced two confronting options - terminate or prepare for palliative care.
"When we chose not to terminate our pregnancy with Whaimanawa it was really hard. My obstetrician didn't expect that. I could tell in her face she knew it would be hard for him and us as a family to bring up a baby that might not potentially survive. I tried to talk myself into it but I couldn't do it."
Stacey felt guilty bringing an unwell baby into the world and prepared herself for the worse.
"For a split second I thought it was my fault having a high risk pregnancy. If Whaimanawa had come early we probably would've looked at palliative care as opposed to the surgeries that were planned for him. Nature is nature, when you start trying to have babies later in life you realise it's not that simple."
Stacey was pleased her natural birth was "peaceful and uneventful". She was smitten the first time she saw Whaimanawa.
Whaimanawa is a poster boy for Heart Kids awareness week. Photo / Jason Oxenham
"He wasn't blue as I expected but big, chubby and loud - all those things that makes your heart sing as a mother".
A day later the newborn was whisked away for surgery.
"We had the 20 weeks leading up to his birth to prepare for that part and to flip our thinking around. The fact he was well enough to have surgery was good news, not the dire news you'd normally expect as parents."
Whaimanawa has had three surgeries so far. Each time he has recovered without any complications but his prognosis is still unknown. However, his operation last year was severely painful and he reacted to the excessive amount of medication he was prescribed.
Whaimanawa enjoying a bit of rough and tumble. Photo / Jason Oxenham
"I had to force a lot of medication into him, it took a long time for him to get over that stress. He didn't want to go into Starship. He was petrified he would be cut open again. He would have massive tantrum and massive meltdowns."
For now, life is back to normal for Whaimanawa and his siblings. They attend the Rumaki unit (total immersion Māori) at Wiri Central school in Manurewa and are fluent te reo Māori speakers. Their dad is their teacher - at times there is a blurring of boundaries.
"Sometimes he brings his cheekiness to school," Chris says. "When you see him at school running around with his friends in the playground you wouldn't think there was anything wrong with him. He enjoys a bit of rough and tumble at school and at home. He's not too shy to have a few fights and scraps with his brothers. We have a plan for him in case something happens, in particular with bruising or if he looks cold. But we're not keeping him wrapped up in cotton wool or anything like that."
The Morunga family. Back, from left - Niwa and Teina. Front from left - Chris (dad), Whaimanawa, Kaitiaki, Tumaia and Stacey (mum). Photo / Jason Oxenham
Stacey is happy Whaimanawa is his own person. She wants him to be treated "normal" like everyone else. But she has a message to parents who don't know her son is sick.
"I need him to be around healthy kids, because if they get sick it might be unrecoverable for Whaimanawa. If he gets respiratory illnesses like colds and flu it will affect how much oxygen he is getting into his body. Be healthy around him and don't share germs."
The Morunga family are thankful Heart Kids organise monthly family events for children with dodgy tickers.
"Heart Kids provide us with events that are safe for our babies but also fun for their siblings like rock climbing and trips to Butterfly Creek. We know we can go there and feel safe. Families make sure their kids are healthy and will consider those little ones like Whaimanawa who are a little bit blue."
Stacey would love to see Whaimanawa grow up and have his own family.
"I want him to be happy. I'd love to see him have a family but at the moment he is an awful 5 year-old so I'm not sure he's going to attract any girlfriends at this stage. He loves being a big brother to Tumaia - the surprise baby - and a little brother to the triplets. He is feisty and embodies his name which means to possess heart and hope. He will give everything a go and he'll go as hard as he can which is a worry - but he won't be left behind."
'Kahu will never be forgotten'
From the moment Kahurangi Toa Shortland-Pattison took his first breath Starship Hospital has been home.
Last week the 11-month-old baby - whose name means Blue Warrior - died peacefully in his mother's arms surrounded by whānau and medical staff - "his other family".
"Kahurangi never made it home," says Lillian Shortland.
"It's not how we planned for it to be but I was pleased he died in my arms. There was a lot of love, 12 of us were with him and we all got to hold him. It was that peaceful we didn't realise he had gone."
Twenty weeks into her pregnancy Shortland, 25, and her partner Elijah Pattison, 30, of West Harbour, were given devastating news their unborn baby had Tetrology of Fallot and Charge syndrome - a rare and complicated genetic disorder which causes blindness and deafness.
"His heart was so stressed. At the end his body couldn't take it anymore. He got tired and his heart wasn't functioning then his organs started failing," she says.
Shortland wants to thank Starship staff and charity Heart Kids for their love and support.
"PICU [Paediatric Intensive Care Unit] was our home, the nurses and specialists made it that way. I told them 'He's yours too'. Kahu will never be forgotten, even though he was tiny and on this Earth for a short time he left his footprint on the lives of so many."
• Visit heartkids.org.nz to donate or text heart to 2427 to make a $3 donation.
