At four, Zhengzeng is too small to understand the long road he’s travelled. But the little boy knows he’s different from other children: his conditions prevent him from swimming, or flying.
And recently, he pointed out his scar to his mum, Yanan.
“I told him, ‘you had a surgery, your heart was opened up,” Yanan says. “You were very brave.”
So brave, in fact, his name is the Mandarin word for brave warrior.
When Zhengzeng came into the world in May 2018, the 2.6kg newborn had a raft of conditions that meant the odds were stacked against him.
He had Tetralogy of Fallot: a hole in the heart, and narrow vessels and a blockage in the flow of blood from the right ventricle into the lungs. He also had Tracheoesophageal Fistula – a rare condition in which the oesophagus and trachea are abnormally connected.
For the next 18 months, Zhengzeng needed round-the-clock hospital care. Surgery mended his heart, while a tracheostomy opened his airway. He was also tube-fed, which continues today.
Astonishingly, baby Zhengzeng smiled through it all, Yanan said.
“The physio, nurse… they would read his notes and come in expecting a miserable baby. But he was smart, alert, bright.”
It’s been a long, difficult journey for Yanan and her husband Richard. Each of Zhengzeng’s milestone has been hard-won, from the removal of his breathing tube in February to his first wobbly journey on a balance bike.
Today, Zhengzeng is an active, happy little boy who keeps his parents on his toes, Yanan says.
“This monkey keeps us busy every single day. He learns fast, he writes, he knows all the numbers. We were told he would have delays, but he is very clever.”
While he has an annual heart scan, Zhengzeng’s heart is his “best part”, and she’s thankful she doesn’t have to worry about it, Yanan says.
The last few years have taken a toll on the family. Thanks to closed borders and Zhengzeng’s inability to travel, the couple have missed out on the valuable support of family back in China. Yanan suffered from depression and isolation. At times, she felt hopeless, she said.
Her visits from Heart Kids support workers were a welcome light in a dark time, she said.
“When we were in the hospital, I was depressed. Lots of people said they were sorry or told me it would be all right. I didn’t need that. I needed real help.
“Heart Kids always came into the room with toys and books for Zhengzeng, and food and coffee vouchers.
“They told me stories about other families, to let me know I wasn’t alone. I’m very grateful for Heart Kids. Don’t think you are alone, sitting in the dark.”
