Big scare for baby Refiloe as he ends up in Netcare Garden City Hospital

At just seven months old, Refiloe Khoza’s life and death struggle with viral pneumonia started with sniffles and progressed to critical heart and breathing complications.

“Refiloe is my fourth son. When he developed flu-like symptoms, we took him to our family doctor, and, at first, it seemed to be just one of those typical childhood illnesses we had experienced with our other children,” recalled Refiloe’s mother, Ntombizodwa. “We gave him the prescribed medication and expected that he would be feeling better in a few days. Our family had no idea of the nightmare that was coming.

“He seemed better and we took him back to creche on the Monday and he was fine all day. That night, we went to bed, and in the wee hours of the morning, Refiloe started fussing a bit. He just kept getting worse, and his breathing became shallow. We took him to the emergency department at Netcare Garden City Hospital. It’s our family hospital, and I always go there. It is the hospital where Refiloe was born, and it turned out to be the hospital that saved his life.”

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In the emergency department, the severity of Refiloe’s illness was confirmed, and he was immediately stabilised and admitted to the paediatric intensive care unit (ICU) under paediatric critical care specialist Dr Irene Chueu. “Everything happened quite fast,” added Refiloe’s father, Freddy Khoza. “Our son could not breathe. It was an emergency situation.”

“Refiloe had developed rhinovirus pneumonia, complicated by myocarditis, which is inflammation of the heart muscle, and cardiac failure,” Chueu said. “On arrival, he was profoundly unwell. His chest was hardly moving when he breathed, his lungs were very stiff, and there was evidence of severe type II respiratory failure with cardiovascular compromise.”

All first line and advanced respiratory strategies, as well as optimised cardiovascular support measures, seemed to be in vain as the baby’s heart and lung function continued to deteriorate, with mounting carbon dioxide levels in his bloodstream which could become toxic. “Given the combined respiratory and cardiac failure, the multidisciplinary team faced the decision to escalate Refiloe’s treatment to provide advanced cardiac and respiratory life support.”

“At midnight, the situation became critical and we had to make the decision because Refiloe’s blood gases were showing signs of hypercapnia, or excessively high carbon dioxide levels,” says cardiothoracic surgeon Dr Sharmel Bhika, who is one of the few specialists trained to perform paediatric extracorporeal membrane oxygenation (ECMO). “ECMO involves a highly specialised therapy that replaces heart and lung function by removing carbon dioxide (CO2) from the blood and introducing oxygen (O2) using an oxygenator, before returning the blood to circulation via a vein or, as in Refiloe’s case, via an artery known as veno-arterial ECMO.”

ECMO is only considered in life-threatening circumstances for babies like Refiloe, whose condition fails to improve with other forms of ventilation. “We knew it was touch and go,” said Ntombizodwa, “and ECMO offered a last chance for Refiloe. It was the most stressful time for us, as parents, and I still feel like crying when I think about it.

“It was one of the most horrible days of my life, when they explained to us that ECMO could be Refiloe’s last hope and outlined the possible risks involved. I cried for my son that day. We were used to seeing him so active and bubbly, and so, to see him lying there fighting for his life was extremely difficult for us as parents.”
For two weeks, Refiloe remained on ECMO under the careful watch of the paediatric ICU nurses and his parents. “It was a very trying time for us, but the nurses and doctors put me at such ease. I could tell from their faces that it was serious, but the level of love and support Refiloe was receiving allowed me to actually get some sleep because of them.”

Still under sedation, Refiloe’s condition improved enough to allow a smooth transition from ECMO treatment, enabling his continued recovery. A week later, the doctors were confident that the little boy could be brought out of his induced coma. By the end of March, after six weeks in hospital, Refiloe was finally able to return home to be reunited with his three brothers. “As a family, we really appreciate the doctors and nurses at Netcare Garden City Hospital, and everything they did to bring Refiloe back to us,” said Freddy. “I must also mention that my wife has been amazing throughout, she showed so much strength as a mother, and her love got our family through this.”

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Chueu attributes Refiloe’s recovery to several factors, including timely access to a paediatric centre of excellence and a strong multidisciplinary team, including the paediatric ECMO service led by Bhika, paediatric pulmonologist Dr Riaz Khan, paediatric cardiologist Prof Hopewell Ntsinjana, and paediatric ICU fellow Dr Noluthando Mkhize. “Fortunately, in Refiloe’s case, the multidisciplinary team needed for this complex paediatric ECMO treatment was in place well before the winter respiratory infection season.”

Prevention is always preferable. Alongside hand hygiene and social distancing, Chueu recommends discussing your family’s immunisation options, including influenza vaccination and respiratory syncytial virus (RSV) prevention, with your paediatrician or general practitioner. “Viral infections that appear benign in the community, such as rhinovirus, can progress rapidly in infants into combined cardiac and respiratory failure. Always seek medical attention early. With the right systems, timely decisions, and co-ordinated care, more children can survive catastrophic viral cardiorespiratory failure.”

“As a family, we are so thankful to have our youngest back home with us,” said Ntombizodwa. “He is doing so well and catching up on his milestones. Refiloe is a very sweet baby, and he is funny. He picks and chooses who he likes and he is especially close to his second eldest brother. He wants to be independent, now that he is feeling better. Refiloe does things on his own schedule, he’s not even a year old yet, and he won’t be told what to do. For his first birthday in July, we are going to celebrate all he has overcome this year, and most of all, cherish being together as a family.”

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