The greatest smile
Boy born with charge syndrome grinning after challenging but successful surgery
For the first time, it will be all smiles this Christmas for 10-year-old Charlie Kiefte, who was born with a rare condition that restricted his ability to make facial expressions.
Now, after undergoing two eighthour surgeries over the past year, the “resilient lover of life” can show his joy, says his mother.
“We could see his eyes sparkle but we could never see his happiness on his face, which was tough,” said Rachel Kiefte.
Charlie was born with charge syndrome — a condition that affects one in 10,000 Kiwi children. It also caused bilateral facial palsy, which not only affects his ability to smile but also to swallow and breathe.
Kiefte said Charlie had told her: “I just want my friends to see me smile so they know what I’m feeling.” Counties Manukau DHB plastic surgeon Zac Moaveni was moved when he heard about Charlie’s story. “He is the coolest kid. He has such a spark of life who despite having had no smile lights up the room,” Moaveni said. Through a new operation, Moaveni was able to take muscle from Charlie’s thigh and transplant it into each side of the face and join them up to new nerves.
The publicly funded surgery was performed at Middlemore Hospital. The second operation was in April this year, and the first a few months earlier.
“It is quite an advanced operation in that technically it’s quite a challenging micro-surgery to join up nerves, vessels, arteries and veins and placing another muscle is really crucial, but it was a success.”
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Moaveni said for Charlie’s parents “it was such an overwhelming moment to see their child smile for the first time at the age of 10”.
Kiefte said her family were ecstatic, given the surgery wasn’t guaranteed to work.
“We were so excited, emailing it to our family who were all very excited,” she said.
The first surgery Charlie had worked on the left-hand side of his face, Kiefte said, and it took several weeks before there was any movement. “It took seven weeks [for the smile] to start and basically with that operation you end up with a full smile on one side,” she said.
“For four months in between operations, one side of his face still had facial palsy, so it was like a lop-sided smile for four months.
“Then you have the next operation and the right-hand side then did the same thing.”
Moaveni said Charlie’s condition was very unusual in children but not uncommon in adults as it could be caused by other diseases such as cancer or trauma. “We probably treat around 20 children a year for facial palsy and only one or two would be bilateral, which means both sides of his face was impacted.”
Smiling wasn’t the only hurdle Charlie was battling, his mother told the Herald. In addition to the facial palsy, his hearing was impaired and his ears were low due to the charge syndrome.
“It also meant his immune system was extremely weak when he was first born so he spent his first 22 months of his life in hospital,” Kiefte said.
Charlie moved to New Zealand four-and-a-half years ago with his Australian mother, his Canadian father, two older brothers and older sister. Kiefte said her son’s voice wasn’t heard until he was 5.
“When he was young he would laugh with no smile on his face and we’d think, “Okay I think he’s laughing’, but when he got his voice we could hear it, now we can see it.”
Next year, Charlie will get a cochlear implant.
Kiefte said the family were given the choice of having surgery to improve his hearing first or give him a smile. They chose his smile.