A young Gauteng man with a rare birth deformity is pleading with the Steve Biko Academic Hospital and the department of health to help him out of his misery so that he can continue to pursue his dreams of becoming an electrical engineer.
Michael Mahlangu – who has the Pierre Robin Sequence, a condition characterised by an underdeveloped jaw, a displacement of the tongue and upper airway obstruction – said he is living his worst nightmare after his operation in 2018.
He said he had been waiting for a date for an operation to fix complications resulting from a major operation in 2017.
The 24-year-old man, who is originally from Sehlakwane village in Limpopo, is in constant pain, suffers from headaches and has pus oozing out of his right cheek.
He said each time he went to the Steve Biko Academic Hospital in Pretoria, he would beadmitted for a few days, then released and given antibiotics. “They tell me they will call me with the date of the op until I go back again when the pain becomes debilitating. I get the same treatment,” he said.
He said his problems seem to be getting worse with each passing day because he now experiences numbness around his mouth, lower cheeks and chin. Even sleep does not bring him relief from his agony.
“I can only sleep on my left side. I cannot sleep on my back because there’s a risk I can swallow my tongue,” he said. “Should it happen that I accidentally sleep on the left side, that side of my head gets swollen up to five times its size,” he said.
Mahlangu, who has accepted that he looks different and that he draws attention everywhere he goes because of his facial deformities, said the oozing pus has put his life on hold.
“I cannot continue with my studies in electrical engineering because of the headaches and the pus,” he said.
“I cannot go to the supermarket or places where food is sold because of the pus that comes out of my lower cheek just under my ear,” he said.
Mahlangu, who lives in Tembisa, Ekurhuleni, said education, which has always motivated him to look beyond his deformities so that one day he can have a career and afford the best healthcare, now seems unreachable because of his health.
He said he has had multiple operations since he was an infant, but the two that he remembers vividly were in 2012 and 2017 because he was a little older.
He said the operation in 2012 was not a success. Mahlangu, who was breathing through a tracheostomy and his speech was severely impaired because of the air coming out of the pipe, said he thought the operation in 2017 would change his life.
“I went to high school at Tjetje Technical High School. I was living on painkillers, which affected the good bacteria in my stomach, resulting in me having a runny stomach.
“So, for me to not have a runny stomach at school given the conditions of our toilets, I would not eat breakfast and lunch. I would only drink water and eat when I got home in the afternoon” he said.
And by eating, Mahlangu said he meant shoving food down his mouth using his fingers because his jaws were underdeveloped.
In 2017, Mahlangu went under the knife to reconstruct his jaws. He said two joints were inserted on both his cheeks.
He said he was encouraged after the operation when he could breathe on his own without the assistance of the tracheostomy, an opening made on the front of his neck so that a tube can be inserted into the trachea or windpipe to help him breathe. He said his speech also improved a great deal.
“I didn’t have to use my fingers to push food down my mouth,” he said. “I knew that the joints were temporary, that they would be taken out and I would have a better quality of life,” he said.
“But I developed other challenges after the operation. I had pus coming out on both sides of my cheek. I would go to school wearing a clean shirt, I would come back dirty. It affected me mentally and psychologically as well,” he said, adding that the headaches became unbearable.
Mahlangu said in 2018 another operation was done to remove the joint on this left cheek. “The oozing stopped on left side. This side does not give me problems. At the hospital they had said I would undergo another operation to remove the joint on the right,” he said.
Despite all these challenges, Mahlangu, who was doing maths, physical science, electrical technology, engineering graphics and design, passed his matric with a diploma pass.
He enrolled at the Ekurhuleni West TVET College to study electrical engineering (heavy current). He passed his N2, but the headaches and challenges with keeping clean stopped him from continuing with his studies.
He said the hospital has been telling him that they will do a second operation since 2019.
Gauteng department of health spokesperson Motalatale Modiba, who responded promptly to enquiries sent by Sunday World, said Mahlangu seems to have been going to the University of Pretoria Oral Health Centre and not Steve Biko Academic Hospital.
“It’s not Steve Biko but the facility is next to the hospital, hence the confusion,” he said, undertaking to follow the matter up with the concerned facility, which is linked to the
University of Pretoria.
On the same day, Professor Mzubanzi Mabongo of the University of Pretoria Oral Health Centre responded to Sunday World by e-mail.
Mabongo, who is the head of department for the maxillo-facial and oral surgery at the centre, said Mahlangu is a known patient of the facility.
“He was first assessed from a neonatal unit in July 1998 for the challenges he was born with. A number of operations were done to correct his congenital anomalies, that is facial anomalies he was born with.
“The first operation was done at the age of two months and the last operation was done in 2018 at the age of 20 years, after which he has had recurrent complications. The major complication is recurrent infections,” said Mabongo.
He said in January last year, Mahlangu was booked for May 15 for admission and a computerised tomography scan on May 17. “According to the hospital records, it seems the patient never honoured the above appointments.
“The patient will be contacted and given an appointment for the earliest possible date. Alternatively, the patient can come to our Monday clinic, which operates from 07h00 to 16h00.”
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