Premature with heart problems, baby Aimee Vienings was born facing challenges, but a surgical complication introduced a new problem that shattered her parents – damaged vocal chords affecting her ability to eat and talk. Then, when she was four, Dr Colin Barber of Starship Hospital opened a tiny window of hope. By Jessica Roden.
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For most new parents watching their baby grow up and learn to talk, sing and shout is a joy but also something taken for granted. So when Emma and Pierre Vienings were told their daughter Aimee had vocal paralysis, considered permanent, their world changed.
“It was probably my darkest day at that point,” says Emma, who had already been on an emotional rollercoaster with her baby daughter, who was born premature with heart problems. “Yes the heart can be fixed but now my daughter can’t speak.”
The Blenheim couple have been through more than most in the last seven years. Pierre, perhaps, describes it best: “When you don’t have a choice you’ll be surprised what you can cope with.”
And yet they’re a family full of hope, due in large part to their sheer determination. And also due to a cutting-edge surgery which did the near impossible, and restored Aimee’s voice.
A baby ‘so tiny and so perfect’
The Vienings were initially parents to one daughter, Chloe. “We struggled to have number two,” says Emma. “And for quite a few years.”
The couple were thrilled when they discovered they were finally pregnant with twin girls. “And then it was a long journey,” says Emma.
Aimee was born 32 weeks premature at just 1.9kg. Her twin sister Grace had a genetic condition and died before birth.
“It was pretty daunting because you were grieving the loss of your one child,” recalls Emma. “But then you had Aimee who was super tiny and there were all these people buzzing around her. But you were also super happy because she was so tiny and so perfect.”
While Aimee was taken to Wellington Hospital and then Nelson Hospital, it wasn’t until they returned to Wairau Hospital in Blenheim that a doctor discovered something was wrong. “The aorta had a narrowing in it and she wasn’t getting blood to all the organs or the bottom half of her body,” Pierre says.
It was made clear to the Vienings that the condition was serious. “Yeah, they said it was touch and go,” says Emma. “So they just said, ‘we’re just preparing it for the worst’.”
Just hours later the family were on their way to Auckland’s Starship Hospital, where Aimee had emergency surgery on her heart in the middle of the night. While the operation bought her time, she needed heart surgery again a few months later.
A worrying silence
Aimee Vienings, 7, had a rough start to life – and her parents didn’t know if she’d survive. (Source: 1News)
Once Aimee came out of the second surgery it didn’t take long for Emma and Pierre to realise something was wrong. “Every time she got a feed, tears would just run down her cheek but she doesn’t make a sound,” says Pierre.
They learnt later that, essentially, every time their baby would feed through her mouth she felt like she was drowning.
After a day or two a cardiothoracic surgeon explained there was a complication of the surgery. “Aimee’s heart was so full of scar tissue from the first operation that they couldn’t really decipher nerve tissue to scar tissue,” says Emma.
Aimee’s vocal cords were damaged and it wasn’t safe for her to feed through her mouth.
For the Vienings, learning this was the darkest moment they’d faced. “Like yes the heart can be fixed but now my daughter can’t speak or eat or, like what is this?”
Initially Aimee had to be fed through a nasogastric tube and, while her parents could understand her as she grew up, others struggled. Her voice sounded hoarse and she couldn’t speak loudly. She had to take big breaths between words and there were other complications too.
“It was the drowning and the swallowing that was the issue for us, you know, not being able to feed safely,” says Emma. They accepted this as their new normal for the next few years, until Aimee turned four and a radical idea was proposed.
‘It is cutting edge what we’re doing’
Dr Colin Barber has been at Starship Hospital since 1991. Many of his patients call him “Dr Jelly Bean” on account of the treats he keeps in his desk drawer.
“I was the first real paediatric ENT [ear, nose and throat] surgeon in the country, and we started the department here at Starship when Starship started,” he says.
While an injury during surgery like Aimee sustained isn’t common, it can happen because the nerve is very small, he says. But he thought there was a way to fix it.
“It is cutting edge what we’re doing,” he says. “I’m not sure if she was the first in New Zealand we’ve done, but she was certainly one of the first. And we don’t do very many of these”.
The surgery involved cutting the vocal cord nerve with enough length to join it to another nerve in the neck.
“Any nerve is like a an electric cable,” Barber explains. “We all know what an electric cable is. It’s got insulation on the outside, and inside there’s the copper wires. And there may be several copper wires. That’s exactly what a nerve is like. So we’re not clever enough to join up each of the individual wires, but we join up the insulation on both sides, and put the nerve together like that.”
Using microscopic needles they managed to get three tiny stitches to join the nerves, with each stitch thinner than a strand of human hair. The surgery went well but it wasn’t until months later that it became clear it had worked.
“I count myself lucky, because I am in generally a happy speciality, because we fix people and we make their lives better, and they say thank you,” says Barber.
‘I wish I knew then that there was hope’
These days there are very few reminders of what Aimee and her family have gone through. She has a small scar on her neck from the vocal cord surgery and others from the two heart surgeries. But Aimee’s voice is back. “She can sing, she doesn’t lose her voice,” says Emma, joking that “if anything she’s too loud now”.
Aimee loves horse riding, playing with her sisters Chloe and Mia, and recently got a drum kit for her birthday. “She just had her seventh birthday and we were thinking, you know, seven years ago we didn’t think we would be sitting here,” says Pierre.
The Vienings are lending their voice and their powerful story to Starship’s National Air Ambulance appeal as this was how Aimee got to Auckland for the first surgery which saved her life.
Starship has New Zealand’s only Paediatric Intensive Care Unit and 85% of children admitted are from outside Auckland. The ambulance has to be available all day, every day.
“It was so quick,” Emma says, recalling that day seven years ago. “Just the prep and them flying down… It was unbelievable. Because, yeah, she was going to… she was dying”.
The memory of that time, a stark contrast to their life and the daughter they have now.
“I wish I knew then that there was hope,” Emma says. “That things were going to get better. And just because Google said stuff or you thought she was going to be something, doesn’t mean she is going to be that person. There’s still… miracles do happen.”
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