Our Children’s Stories
We seek to answer the questions children and their family have about cardiac surgery. We are focused on helping to improve the quality of surgery and care for all children at diagnosis, in surgery, in intensive care and in the weeks, months and years that follow. We seek to answer questions such as “I want to know more about the procedure?” We also seek to inform health professionals about the cultural, social and economic issues that expose their vulnerable, small patients to greater risk so that these can be addressed. Where home and community support exists, these can also be used to effectively help the family recover from the child’s illness and surgery. Our research shows us the value in building trust in the families’ cultures and beliefs and in the surgeons, doctors, and nurses who do the surgery. The question is not just about those that get better, but how they get better and what happens when the repair is not complete – who looks after them then and gets them back to good health? We are focused on finding out information that promotes answers to these questions. We would like you to meet some of the children who have had cardiac surgery at the Red Cross Children’s Hospital in Cape Town, and our most recent research with children in Australia. Below are their photographs and stories and we hope that you are inspired by these.
Cape Town: A Qualitative Snapshot of Ten Cardiac Surgery Cases from 2011-2016
Operation BraveHeart in South Africa tells the stories of ten children who required that they have heart surgery in the Red Cross War Memorial Children’s Hospital in Cape Town, South Africa. Our team followed these children during and after their surgery - into their homes and on their return check-ups at the hospital - because little is known about children with heart defects in developing countries, where even the provision of surgery is frequently rare. We need to know more about how such children fare, in particular because international best practice and research suggest that such children have better post-operative outcomes when there is a supportive environment at home and integrated care between hospitals and communities. The resources to carry out such long term and integrated care are lacking in South Africa - as in many other countries.
The children in our Cape Town study are Anganathi, Gaylon, Hannah, Kayleigh, Mikaylah, Mogamat-Kamal, Muswamba, Mzamo, Sokwakha and Tamsyn. All the children and their parents gave us permission to include their stories on our website. What is exciting is that our children all live in the greater Cape Town area and came in from their homes into the hospital to get surgery. What was unique about this study was that we then followed each child back into their home and community to find out how well they were doing over an extended period from 2011 until 2016. Now we are publishing articles on their stories so that we can deliver better health care to children who need heart surgery but come from less advantaged circumstances.
To do this study we needed to find out where each child lived and what happened to them on their return from the operation. More importantly we, as researchers, needed to find out how difficult it was to reach them, as you can see from some of their stories just getting to the hospital can be a challenge, e.g. Anganathi lives in Khayelitsha and roads to his home can be difficult to use. Can you imagine what it is like to bring a small child who has had open heart surgery home to a shack where running water is difficult to get? One little child was born into a refugee family from the Congo and we therefore had a problem with language and understanding each other and the plans we needed to make. As you will see in their stories most mothers had to use public transport to bring their child into the hospital. Often this was a late admission, because there are few clinical resources in their communities. Our project sought to work with children who came from different cultures, spoke other languages and had different religions. We welcomed the chance therefore to see how the Acherdien family, who are Muslim and wanted to pray regularly, managed having little Mogamat-Kamal in hospital. Alternatively Mzamo was isiXhosa-speaking and his father wanted to find out if his heart condition would prevent him from going through circumcision when he was old enough.
- Ali - Read about Ali’s story
- Aiden Read about Aiden’s story
- Aria Read about Aria’s story
- Ollie Read about Ollie’s story
- Beau [Read about Beau’s story]
We welcome further engagement with families of children undergoing heart surgery especially in communities where children are in need and often the socio-economic circumstances place the children at greater risk. Please contact us directly if you would like to be a part of the Research or share your story on Facebook.
The Legal Guardians of Children appearing in the pictures and stories on this website have given their written consent. They were part of the Operation BraveHeart project in Cape Town, South Africa and Sydney, Australia. The research was approved by the Human Research Ethics Committee at the Faculty of Health Sciences, University of Cape Town, and the Human Research Ethics Committee of the University of Sydney, Australia.