Breathing through the nose is something most of us take for granted. We don’t think about it and usually become aware of it only when we have a cold – and we certainly can’t imagine life without a nose.
Amukelani Innocentia Bekwa can, however – she was born with the rare condition arrhinia, which makes her one of about 50 people worldwide born without a nose. The 20-year-old of Limpopo is recovering from an intensive five-hour operation to correct her nasal defect when YOU visits her in hospital.
“I’m still not used to it,” a beaming Amukelani says while showing off her new nose. “It’s a bit hard (to the touch) but it was a beautiful feeling to breathe through my nostrils for the very first time.” Only one other South African – Ennica Makhge – is recorded to have been born with the condition.
In fact, it’s thanks to Ennica that Amukelani sports her nose today. Amukelani and her mom read about Ennica (19) last year when she became the first South African to have the life-changing surgery.
The Pretoria medical team who performed Ennica’s operation would go on to help Amukelani too. Maxillofacial and oral surgeon Dr Hermann Kluge, his brother, ear, nose and throat (ENT) surgeon Dr Johann Kluge, and prosthodontist Dr Cules van den Heever performed the tricky surgery that today ensures Amukelani can breathe through her nose instead of her mouth. She’s delighted she can now enjoy her food even though she’s not able to smell it.
she won’t have to stop eating simply to be
able to breathe.
The slender young woman also finds great
pleasure in looking at herself in the mirror.
“The old me is gone,” she says with a chuckle.
“I definitely look prettier.”
The most complicated part of the technically challenging procedure was to create a new nasal passage for Amukelani, Dr Hermann Kluge says. It’s particularly difficult to enter via the skull and any imprecision could result in uncontrollable bleeding.
First a 3D model of her face, skull and jaw was created by the Central University of Technology in Bloemfontein. Extensive planning had to be done before the medical team could go ahead with surgery. “It’s important to have a provisional nose beforehand because you need to know where to cut and place the implants,” Hermann Kluge says.
“If the nasal cavity is in the wrong position,
if the incisions are in the wrong place and
if you don’t plan properly at the outset,
then you’re gone,” Dr van den Heever adds.
“There’s no turning back once you’ve done it.” They had to create a nasal cavity and tear ducts, correct the bite alignment of her jaw and ensure there would be nasal drainage. A skin graft from Amukelani’s thigh helped to create the nasal passage that would allow airflow through her new nose.
Then, finally, the nose could be fixed to her face, using magnets. Hermann Kluge confirms surgery on this scale is daunting. “They’re not procedures we perform every day and the patient can die if you’re not careful and things aren’t done correctly,” he says. “If you crack the skull it may lead to meningitis, which is fatal.” Dr van den Heever has lots of praise for Amukelani’s mother, Kokoti Bekwa (60).
“You really have to take your hat off to the mother who kept her alive somehow because there are great risks involved,” he says. “Just think of a baby – what usually happens is that the children develop a problem with breathing and eating and they don’t make it.” The three doctors are excited about the results and relieved Amukelani is recovering well. “It really will change her life,” Hermann Kluge says.
“She’s going to have a different view of the world.” As she becomes older she can even change her nose if she wants to – it’s made of the silicone used in special effects for films. “It’s what is underneath that she can’t take out,” Hermann Kluge says. The procedure is quite expensive – Ennica’s surgery cost about R500 000 and was sponsored.
The team sponsored parts of Amukelani’s surgery too, but her mom and dad,
Donald (63) – both retired teachers – have to
pay some of the costs not covered by their
“What the medical aid pays doesn’t even cover the materials of the prosthesis,” Dr van den Heever says. “That’s sponsored. We’re doing it because we care about the patient’s quality of life.”
They can see the spark in Amukelani’s eyes since the operation. “It’s not a lucrative procedure – that’s why we don’t do it for money.” Although they’re pensioners, Kokoti and Donald wouldn’t let that stand in the way of their child having the op.
“We’re struggling to make ends meet but we said, ‘Life first’. We’re drained financially.” Kokoti describes her daughter as a miracle. “She’s a gift from God that I’m grateful for and a gift needs to be accepted.
That’s why her name is Amukelani, which means to receive a gift.” She was hurt when other children made fun of her child. “But I used to tell her to tell those kids that she’ll get a nose one day.”
When Amukelani was a toddler she had difficulties breathing and eating at the same time but adjusted quickly. “Even the doctors were very surprised she could adapt so well,” Kokoti says. “She’s a miracle baby. She’s strong. “I put all my trust in God. I knew one day He would finish this process.
Amujelani's days of being
teased are finally over. She’s
endured many nasty comments
and stares but she just let them
go, she says.
“Of course I got sad. But I can’t
even remember the names they used to call
me. It was a long time ago. I knew I was different because I was the only one at school
without a nose.”
She surrounded herself with friends who loved her and family members who always stood by her side. Being different didn’t deter her from playing outside or going on school excursions.
“Many people say I’m confident, and I only have God to thank for this. I must have been born with it,” she says, adding she learnt from a young age not to feel sorry for herself.
She received little help from other doctors she consulted over the years but she never lost hope that one day she’d have a nose. At 11 months doctors tried to open her nasal cavity but when the tubes were removed it unfortunately closed up again.
“Whenever I was bored I’d imagine what it would be like to have a nose.” She won’t be locking herself indoors with the TV every weekend any more. “I’m going to go out more.” She’s also looking forward to completing matric this year, she says. She didn’t tell any of her friends about the surgery and wants to surprise them when she’s back at school.
She can’t believe she has a new nose. “I was always hopeful that it would happen one day,” Amukelani says. “And it feels good. I’m so happy. I’ve waited for this moment for a long time.”