Alondwe ready for surgery: Before the procedure, Alondwe Ngwenya suffered with the extreme weight of the tumours.

All photos supplied by the family.

Help at last for young soccer fan thanks to medical teamwork

Ten-year-old Alondwe Ngwenya was, until recently, a child set apart by large, painful tumours disfiguring one side of his face and his foot, holding him back from his greatest passion in life: soccer.

“It has been a long time that we have been seeking help for Alondwe. We are very happy, and can see he is getting better already,” says Alondwe’s mother, Ntombifuthi Khumalo, who made the journey with her son from Bergville in rural KwaZulu-Natal for the operation in June.

“Alondwe is very passionate about soccer, especially cheering for his favourite team, Kaizer Chiefs. He also dreams of becoming a lawyer one day when he grows up, to fight for justice and protect the innocent,” she says.

Professor Anil Madaree, Head of Craniofacial Surgery at UKZN’s Nelson R Mandela School of Medicine, practises both at Inkosi Albert Luthuli Central Hospital and Netcare uMhlanga Hospital, where specialists performed the life changing procedure pro bono in association with the Netcare Foundation.

“I first heard of Alondwe after he appeared in the media, when his mother made a public appeal for medical assistance for her son’s condition. His condition caused him pain, kept him isolated, and stopped him from living the active life a child his age should enjoy,” Prof Madaree says.

“Several NGOs approached me to see what could be done to help young Alondwe. The real breakthrough came when the Netcare Foundation reached out to offer its support, making the procedure possible in the private sector, following his scans and workup in the public sector.

“Alondwe’s condition is known as neurofibromatosis, involving benign tumours of the nerve cells that continue growing, usually affecting multiple sites on the body. For Alondwe, the biggest were on his head, neck, and one foot. We were confident that it was possible to help alleviate the discomfort and some of the functional impact the tumours were having on him to significantly improve his quality of life,” he says.

Ear, Nose and Throat (ENT) surgeon Dr Mahommed Thandar, who practises at Netcare St Augustine’s Hospital and consults at the provincial hospital part-time, also learned of Alondwe’s plight in the media and made enquiries to see how the boy could be helped. He connected with Prof Madaree and plastic and reconstructive surgeon Dr Zama Khumalo of Inkosi Albert Luthuli Central Hospital to see how they could help.

“The very large mass of tumour was affecting Alondwe’s head, and his ear was quite distorted as a result. The bone of the ear, the canal and the pinna were distorted by the tumour, which affected his hearing in that ear.

“The tumour on his head was both a cosmetic and hearing issue, while the tumour on his foot was affecting his walking and was therefore a functional issue.”

Dr Khumalo adds, “The mass was putting serious strain on all the surrounding tissue, stretching the skin on Alondwe’s face, and we removed as much as possible in the debulking surgery,” she explains. 

In addition to the specialised medical skills, a well-equipped surgical theatre and recovery time in an intensive care unit were needed. When Netcare Group chief executive officer Dr Richard Friedland read about Alondwe’s mother’s plea, he immediately set the wheels in motion for the healthcare provider’s corporate social investment (CSI) arm, the Netcare Foundation, to make the procedure possible.

The Netcare Foundation helps those who need it most to access quality healthcare, emergency medical services, specialised surgery, and support community projects, including human milk banks for the distribution of donated breast milk to premature babies, scholarships for future doctors, and donations to NGOs.

Dr Thandar says that the surgery also helped to restore the alignment of Alondwe’s ear, however the extreme distortion of his ear canal and the damage the tumour caused to the nerves could not be surgically repaired this time. “Fortunately, Alondwe’s hearing in the other ear is not affected, and perhaps a bone conduction hearing implant might be an option if needed in future,” he says.

After a few days in the ICU at Netcare uMhlanga Hospital and several more nights at Inkosi Albert Luthuli Central Hospital for observation, Alondwe was discharged home, to his relieved mother’s delight.

Prof Madaree adds that once Alondwe has healed, further check-ups will determine if a less extensive procedure may be required for minor adjustments, given the extent of the mass removed. “For now, we are pleased with the progress he has made, and we wish Alondwe the best for his continued recovery,” he says.

Alondwe’s mother, Ntombifuthi, says, “We are just so happy and grateful to the doctors, Netcare uMhlanga Hospital, and the Netcare Foundation for this opportunity to help Alondwe.”

“Working together, public and private healthcare can make a huge impact on a child’s daily quality of life and ability to participate to his fullest potential in school, in sports and in the activities that contribute to their development at this crucial age,” says Mande Toubkin, Netcare’s general manager of emergency, trauma, transplant and CSI.

“On behalf of the Netcare Foundation, we thank Prof Madaree, Dr Thandar, anaesthetist Dr Luxmi Pillay, Dr Khumalo and otorhinolaryngologist Dr Warren Kuhn, who all gave their time and expertise pro bono to assist Alondwe. This young man has been so brave, enduring his painful condition, and we are grateful to have been a part of relieving this burden for him.”