Nosipho Mngoma spoke to a man who, along with his family and 20 different types of professionals, volunteers his time and expertise to ‘create smiles for Africa’
Friday marks the start of Cleft and Craniofacial Awareness and Prevention Month dedicated to sensitising people to the causes, impact and treatment of a congenital condition which can be medically and psychologically devastating for those afflicted.
Sanjay Shrikisoon called Durban orthodontist, Dr Surandar “Sikki” Singh, the Magic Man for the work he has done treating his daughter, Gabriella, since she was born.
The 16-year-old now has a smile, one she looks forward to wearing proudly at her matric dance next year.
Gabriella was born with a cleft, a deformity of the face and mouth caused by abnormal fusion of the facial parts when the baby is forming in the womb.
Unlike most, Gabriella’s lip was split in two places.
“When I saw her for the first time I got a shock,” said Shrikisoon.
“She had a bilateral cleft, that means her lip had not come together in two places. I was actually scared for her life because it looked so serious.”
Fortunately, nurses and doctors were quick to reassure him this could be repaired.
They were referred to Singh who, in the early 90s, was one of the first black orthodontists in the country.
Singh was initially enlisted to help the plastic surgery department of Wentworth Hospital treat and rehabilitate patients with facial deformities who required advanced dental care.
He eventually started a free service at the hospital’s dentistry clinic which inherited cleft lip and palate patients.
Initially, the clinic saw between 15 and 20 patients a month. More than 20 years later, formalised as the Wentworth Foundation, the clinic sees 250 patients a month at Wentworth Hospital – after which it was named – as well as at Northdale Hospital and at Singh’s private practice in Durban North.
From Friday, the foundation will add to its 2 000 patients on file with the opening of a clinic at the KwaZulu-Natal Children’s Hospital.
Singh’s daughter, Sureka, runs the foundation, allowing him to dedicate all his time to patients.
Once a month, Singh closes his private practice and opens it to Wentworth Foundation patients from all over the province and some from the Eastern Cape.
“They come on referral from government hospitals, patients don’t come to us direct. They are referred to us because there are no facilities or expertise for this kind of treatment in the public sector,” said Sureka.
“Orthodontists earn very well but I am not doing this for the money. All 38 specialists volunteer their time to offer these treatments to Wentworth Foundation patients. We even have one orthodontist, Dr Maurice Talbot Ferguson, who flies in from Cape Town for the clinics every month,” said Singh.
He said because cleft lip and palates were on the face, they could result in “many years of agonising over relatively simple tasks such as eating, breathing and talking. Also, the psychological impact is often catastrophic and detrimental to human development”.
Singh said he did this because he would not be able to live his life seeing facial deformities knowing he had the expertise to do something about it.
Gabriella had her first operation at three months old.
“This was to sew her lips together in the places where they were split.
“This was revised when she was about 10 years old to extend the space between her upper lip and her nose,” said Shrikisoon.
Growing, up, Gabriella enjoyed the unconditional love of her parents, but her earliest memory of being aware of her condition was of other children teasing her.
“I used to get really upset but my family told me to just ignore them,” said Gabriella.
Shrikisoon said he called Singh the Magic Man, because he fixed something which could have affected his daughter’s confidence and health for the rest of her life.
She is currently undergoing dental treatment, and speech therapy. Shrikisoon said the cleft palate was not picked up when his wife went for scans. “I still have the scan and you can clearly see Gabriella’s hand over her mouth,” he said.
The father and daughter were full of praise for the staff at the foundation, saying they involved them in Gabriella’s treatment.
“They explain every step to us. Understanding what is happening is a big part of having a positive attitude,” said Gabriella.
Patient relations is largely the job of Singh’s wife, Savitri.
The family team complement one another, each giving credit to the other.
They all agree that the end result – seeing people like Gabriella after their surgery, with big smiles on their faces – is all the thanks they need.
Gabriella’s last reconstruction will be in 5 years, but she already happily shows her progress to other children and parents at the clinic to encourage them and show them that the condition can be repaired.
Mandisa Hlabisa is from the northern KwaZulu-Natal town of Hlabisa. She is one of the many mothers and patients who attend the Wentworth Foundation’s free monthly clinics on referral from government health facilities.
Hospital transport brings them to the venue and they spend the day being seen to by experts they otherwise would not have access to or be able to afford.
When she gave birth to her daughter, Thembelihle, a nurse brought the baby to her for her first feed.
“I held her to my breast; she would open her mouth around but could not suckle,” said the 19-year-old mother.
After trying time and time again, the nurses looked inside the newborn’s mouth and discovered the roof of her mouth was missing. This meant milk would come out of her ears and nose.
After a month of feeding through a tube in her nose, Mandisa was able to feed her daughter for the first time at her first visit to the foundation.
Part of the work of Saras Naidu, the foundation’s oral hygienist, is to teach mothers like Mandisa how to feed their babies after they have been fitted with a cleft plate made by Singh.
“I teach mothers to use a special tape to lift the nose and stop it from collapsing. You see there is no (nasal) bridge. The tape helps bring the split closer for the operation,” she said.
Saras Naidu has been working at the foundation for 27 years. She said the sight of a baby with a cleft lip is so startling, that some mothers are initially afraid of their own babies.
“Some people believe it’s a curse or they have done something wrong.”
That was the case for Nomvula Nikhwe when she saw her son for the first time after giving birth 11 years ago.
Not only did her baby have a cleft lip, but his ears were so malformed, the right one was almost absent.
“I had had problems with my own ears for years. I developed lumps on my earlobes after I pierced for the first time as a teenager. They were sore and it felt like there was something inside.”
These got progressively worse every time she was pregnant but it was not until after the birth of her fourth child, Hlelani, that the lumps subsided.
These were surgically removed on the same day that Hlelani had his cleft lip closed at another hospital, before being referred to the foundation.
As her son’s treatment progressed, her ears worsened when she fell pregnant with her last child five years ago.
“The lumps are even bigger than before, they are painful and sensitive to heat and cold and they now smell, that’s why I wear a scarf,” she said.
Some of the causes of the condition are environmental factors, medication, stress and recessive genes. This is likely what caused Hlelani’s condition.
Cleft lip or palate is a congenital condition which can be inherited.
Because none of Ntombifuthi Zwane’s seven children had birth defects, she thought she had no reason to worry when she went for her first scan when she was eight months pregnant.
“I was attending the clinic at Pongola.
“When you are eight months (pregnant), you go for your first scan but when I went, I was immediately transferred to the hospital in Empangeni for an emergency C-section.
“I left home to go for a routine scan leaving things I thought I would do when I came back a few hours later.
“I could not even go back home to pack a bag for myself or the new baby, it was that much of an emergency,” said Zwane.
It had been discovered that Zwane was pregnant with twins but one had died in utero.
Devastated and alone, Zwane said she was so grateful to hear her surviving son cry and show life that she did not even notice his split lip through her tears.
“I thought it was blood or skin or something left on his lip from him coming out of me. I had never seen anything like it before, his lip was completely split.”
The 39-year-old said, after seeing her stillborn in the mortuary, in a “very bad condition”, she was just so relieved she would be going home with at least one baby, that she didn’t care about the cleft lip.
She named him Ntokozo, which means happiness. Zwane was at the foundation learning how to tape his cleft.
She is hopeful that Ntokozo will eventually look “normal” after seeing older patients of the foundation like 13-year-old Lerato Thusi.
Every month, Lerato takes off school and her father, Nkosinathi, accompanies her to the clinic in Durban North.
She was at the clinic for Singh to continue work on straightening her teeth.
When she was born, her father said they had accepted her as their gift. “We are all dealt our lot in life, and we accepted ours and are doing everything to make her understand and accept that as she gets treatment,” said Nkosinathi.
Lerato said she struggled at school because other children teased her for looking different.
“I go to a special school now and I like it.
“All the children are special in their own way and God made us all special in different ways,” she said.
Samkeliswe Chiliza, 25, of Inanda, grew up not knowing about her condition.
“My mother passed away when I was young and I was raised by my grandfather, who always believed my lip was cut by doctors at the hospital when I was born.
“I figured it had happened, this is what I look like, let me accept it.”
Although her lip had been sewn up when she was a baby, she could not close her mouth because her teeth sat on top of each other. Her braces will soon come off, signalling the end of her treatment and she will look like everyone else.
“And to think I don’t even know how much this treatment would have cost because the Wentworth Foundation helps us for free, they are angels,” said Chiliza.
How the treatment works
* 1 in every 750 births in South Africa is cleft.
* 80% of clefts are only on one side of the face.
* More common in Caucasians.
* Happen mostly on the left side of the face.
* More males than females have clefts.
* 4 months old: The cleft lip is repaired, bringing together the split parts of the lip.
* 9 months old: A plastic surgeon repairs the palate and soft palate.
* Up to 8 years old: Patient is treated by a speech therapist, audiologist, dentist, ear, nose and throat specialist, and psychologist. Orthodontist places an appliance to widen the jaw and straighten the teeth.
* 10 years old: Maxillofacial surgeon takes bone graft from the hip into the palate. Fitted with braces to straighten teeth.
* 18 years or older: Maxillofacial surgeon performs jaw surgery of cleft palate. The patient has stunted growth of the upper jaw.
* 19 years old: Correction of shape of nose which is often deformed because of the cleft.