‘A fairy tale come true’ for little girl and her parents
June 8, 2021
Four-year-old Amara Ngwenya recently received a lifesaving heart operation sponsored by Medipost Holdings and the Netcare Foundation at the state-of-the-art Maboneng Heart and Lung Institute at Netcare Sunninghill Hospital. The team of specialists who performed the surgery also gave their services pro bono. Amara, who has ambitions to become a fairy when she grows up, is recovering well after the procedure to correct a hole in the heart known as an atrial septal defect. She is pictured here with Sister Lindelwa Msimango in the cardiothoracic intensive care unit at Netcare Sunninghill Hospital only a few days after her surgery.
Amara, four, receives lifesaving heart operation
Four-year-old Amara Ngwenya has big ambitions even though she is physically small for her age, as her growth was stunted by a serious heart condition. Thanks to lifesaving donations from two leading South African healthcare companies and a committed medical team, she is recovering well after recently benefitting from intricate cardiac surgery to repair a hole in her heart.
“I want to be a fairy when I grow up. A fairy who uses her magic to make other children fairies, so that they can help others too,” says Amara who is recovering at home, gaining strength and raring to go and play, just days after undergoing the operation to repair the heart defect at the renowned Maboneng Heart Institute at Netcare Sunninghill Hospital in Johannesburg.
Amara is the latest beneficiary of the Heart-to-Heart Campaign, a corporate social investment (CSI) match funding challenge to raise resources for life-saving operations for children suffering life threatening heart conditions. The heart surgery covered by donations from Medipost Holdings and the Netcare Foundation, which is the CSI arm of the Netcare group.
“Two years ago, Amara developed a fever and was so ill that she had to be admitted to Steve Biko Academic Hospital – the same hospital she was born in – for about two weeks. The doctors diagnosed rheumatic fever, and found that her heart was beating abnormally,” says her mother, Runel Ngwenya.
“After that, Amara wasn’t eating or growing normally like other kids. I would have to find ways to persuade her to eat and try to tempt her appetite with her favourite foods: potatoes and porridge.”
“Amara, who was referred to us from Steve Biko Academic Hospital by interventional paediatric cardiologist Prof Lindy Mitchell, had an atrial septal defect, or a hole between the two upper chambers of her heart, which required a specialised procedure to correct,” explains cardiothoracic surgeon Dr Erich Schürmann, of the Maboneng Heart and Lung Institute at Netcare Sunninghill Hospital where the operation was performed.
“As parents, we have been so worried about our daughter’s health, especially because we are both unemployed and cannot afford medical aid. We couldn’t believe it when we heard that Medipost Holdings and the Netcare Foundation would cover the costs of the operation, it was like a fairy tale come true,” Runel says.
Cardiothoracic surgeons Dr Schürmann and Dr Martin Myburgh of the Maboneng Heart and Lung Institute, paediatric cardiologist Dr Janine Meares who practises at Netcare Sunninghill Hospital, as well as anaesthetist Dr Krishnee Naidoo and cardiac perfusionist Mr Mogotsi Mophosho committed their time and expertise pro bono to provide Amara with the lifesaving procedure and care she needed.
“If untreated, a hole in the septum the size Amara had, unfortunately can be debilitating, and even life-threatening, as the child grows the heart defect ultimately damages the arteries of the lungs. Fortunately, Amara’s procedure went smoothly, and was completed in three hours,” Dr Schürmann explains.
“So far, indications are that the operation was a complete success and, while we will monitor her progress, we expect she will now be able to live a full and normal life.”
“We are delighted that Amara is recovering well after her operation. She has been incredibly brave, and children like her represent the future. It has been our privilege to contribute funding for her procedure through Medipost Holdings’ corporate social investment,” says Rentia Myburgh, group sales and marketing director of Medipost Holdings, comprising Medipost Pharmacy, MediLogistics, Kawari Wholesaler and Distributor and the Medi Training Academy.
“We are extremely grateful to the Netcare Foundation for their half of the donation, which enabled this promising young girl to get the specialised medical intervention to hopefully live a full and normal life.”
Runel says that the family are immensely relieved that Amara is going from strength to strength since having the operation. “Now, she has a real appetite! We are trying to keep her still for a few weeks while she recovers, and because she already feels better Amara wants to play like a healthy child,” she says.
“Amara doesn’t walk in the house, she always wants to run. And, as you know, she wants to be a fairy when she grows up – and she has even developed her own method of ‘flying’. She has a habit of climbing up the inside of a doorframe right to the top, then she leaps – or ‘flies’ – to the ground.
“The sky is the limit, as far as Amara is concerned. Now that she has had her operation there are no limits to what she can do and achieve,” her proud mother says.
“We thank God for the many people and organisations that have helped our daughter. We are astonished at this generosity, and we feel very blessed. A big thank you to the Netcare Foundation and Medipost Holdings for covering the costs to allow our daughter to have this operation so soon, as we have had many sleepless nights worrying about her health.”
“As a family we are very grateful to the teams from the Maboneng Heart and Lung Institute, the theatre and cardiothoracic intensive care unit at Netcare Sunninghill Hospital for the highly specialised treatment and care they provided to Amara,” adds her father, Mugisha Francis.
“The synergy between these teams has been very reassuring for us during this anxious time. In the three hours we were waiting for Amara to come out of surgery I took comfort from something Dr Myburgh told me – that it is their life’s commitment to look after patients such as my daughter.
“We have seen this wonderful dedication from everyone involved in her care. The specialists and the nurses, both at Steve Biko and at Netcare Sunninghill Hospital, have been amazing. I would also like to thank the team from the Maboneng Institute for their daily updates and for being so encouraging.
“The Netcare nurses treated her like a princess – even painting her nails and entertaining her in the ward. When you see these acts of caring, and the people who do it with a loving heart, it is so inspiring,” he says.
Mande Toubkin, general manager: emergency, trauma, transplant and corporate social investment at Netcare adds: “On behalf of the Netcare Foundation, we wish Amara all the very best as she gets stronger every day.
“Through the Heart-to-Heart Campaign, we hope to assist eight young children to receive these lifesaving procedures at the state-of-the-art cardiothoracic centre based at Netcare Sunninghill Hospital. There are, sadly, still many more children with serious heart defects in need of similar operations, and we challenge other corporates to join us in supporting this extremely worthy cause,” she concludes.
For more information about the Maboneng Foundation, which coordinates sponsorship of the procedures, or to make a donation please visit www.mabonengfoundation.co.za
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Naturally, this model calls for the open participation of patients, the healthcare industry, health professionals, and the Government. “The most critical elements are robust diagnosis standards, improved access to treatment, data collection and management, co-ordination of care, measurement of outcomes and ongoing collaborative research,” du Plessis says. “We need to establish rare disease advisory committees, map gaps and opportunities, establish system requirements, create a roadmap and plan a phased implementation with clear timelines.” The RDAI states that these policy development steps would be a start in quantifying the disease burden and defining standards of care. This would be followed by building and strengthening the capacity to facilitate appropriate diagnosis, treatment, continuity and data monitoring. 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About RDAI The Rare Diseases Access Initiative (RDAI) is dedicated to advocating for improved healthcare access, policy development, and patient support for those affected by rare diseases in South Africa. The initiative brings together key healthcare stakeholders, including pharmaceutical associations, funders, genetic specialists, and patient advocacy groups, to drive impactful change. About RDSA Founded in 2013, Rare Diseases South Africa (RDSA) is a non-profit organisation advocating to ensure that people living with rare diseases and congenital disorders experience greater recognition, support, improved health service and better overall quality of life. Started out of personal need following the diagnosis of organisation founder, Kelly du Plessis' son, it became evident that there was a lack of awareness and support for rare diseases in general in South Africa. 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