The greatest smile: Charlie, 10, learns to smile for first time after surgery

Newstalk ZB,
Publish Date
Wednesday, 19 December 2018, 8:44AM

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 eight-hour surgeries over the past year, the young boy can smile. 

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.

Charlie's mother Rachel Kiefte told Mike Yardley seeing his first smile was amazing.

"We did just see the smile on one side first and then obviously the next side quite a few months later but just to see that first bit of movement on one side was just amazing, after nine-and-a-half-years of seeing nothing, no expression or anything on Charlie's face."

"So to actually now have a full smile, and it is the biggest smile, huge chubby cheeks and a big smile now is just really lovely."

After two 8-hour-long surgeries over the last year Auckland boy Charlie Kiefte is smiling for the first time. Photo / Doug SherringAfter two 8-hour-long surgeries over the last year Auckland boy Charlie Kiefte is smiling for the first time. Photo / Doug Sherring

The eight-hour surgeries take a toll on the youngster's parents who wait with bated breath.

"He's had 34 procedures before so we are sort of used to him having operations but this was the longest that he's had. So we just try to keep occupied while he's under general [anesthetic] and it's just a relief once he comes out."

It's not an easy procedure and we've got a lovely surgeon, Zac Moaveni, who is just absolutely fantastic so yeah, we have gone through a lot but it's worth it for Charlie to get to smile."

Charlie has a few different complications, including being profoundly deaf, Rachel said.

"Charlie had tracheostomy until he was four, so we didn't hear him speak until then. He's a little bit wobbly, his balance isn't great. He's profoundly deaf so he has hearing aids for that, so quite a few different complications."

Charlie received his first cochlear implant a few days ago and is set to get his second one next year.

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.

Up until April this year Auckland boy Charlie Kiefte (10) could not smile. Photo / Supplied
Up until April this year Auckland boy Charlie Kiefte (10) could not smile. Photo / Supplied

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." 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".

About charge syndrome:

• Charge syndrome is a genetic condition of birth defects which occurs in about one in every 9000 to 10,000 births worldwide.

• It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child.

• Babies with charge syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems.

About facial palsy:

• Also known as Bell's palsy, facial palsy is the onset of paralysis of one of the facial nerves.

• The main symptom is muscle weakness on one side of the face, causing the face to droop.

• It is unusual in children but not uncommon in adults as it can be caused from other conditions such as cancer and trauma.

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