Being together over the festive season had special significance for the Ndlovu family after one of their identical twin babies returned home, thriving after spending months fighting for his life in a paediatric intensive care unit in another province.

“Our twin boys, Kwandokuhle and Kwenzokuhle, were born in April and, at the end of May, when they were just over a month old, both of them developed a flu-like illness. We rushed them to the hospital, and Kwenzo was placed in isolation while we awaited their blood test results,” Andile Ndlovu, from Howick in KZN, recalls.

Rising Sun reports that both twins tested positive for respiratory syncytial virus, and doctors discovered a hole in Kwando’s heart that further complicated his situation. While Kwenzo remained in the local hospital, Kwandokuhle’s condition was deteriorating, and doctors discussed the need to transfer him for specialised care at Netcare Waterfall City Hospital in Gauteng.

“We were so worried about him, and the doctors explained that his life was in danger, but there was an option to take him to Johannesburg for specialised treatment called extracorporeal membrane oxygenation (ecmo), but that this also came with risks that we had to be aware of,” Ndlovu recalls.

Netcare and specially trained advanced life support paramedics and cardiothoracic surgeon, Dr Sharmel Bhika, operate an ecmo retrieval service specifically for children like Kwando, who are too critically ill to be transferred by conventional ambulance services, enabling their transport to centres where they can be continuously supported and receive escalated care for the best chance of eventual recovery.

When ventilation was no longer enough

At the referring hospital, Kwandokuhle required maximum mechanical ventilatory support but was not reaching adequate oxygenation. “High-pressure positive-pressure ventilation, lung overdistension and high inspired oxygen concentrations can all lead to secondary lung injury, which increases the risk for multiorgan injury and dysfunction,” Bhika said.

Ecmo is a form of life support in which specialised equipment artificially performs the functions of the heart and lungs, giving them a chance to heal.

“It was a clear indication in Kwandokuhle’s case as his rapid deterioration and increased demand on mechanical ventilatory support were possibly causing more harm to his body, and secondly, ecmo would be required for the safe long-distance transfer of our tiny patient,” she said.

Ecmo is only considered in life-threatening circumstances for young children, and paediatric ecmo transfer is a highly specialised and complex service involving extensive teamwork and months of training and preparation.

“It is not viable for every child in respiratory distress, and even for clinically-appropriate patients who receive this advanced heart and lung support as a last resort, the odds against survival remain significant. But for some, like baby Kwandokuhle, it offers a chance for recovery where there is otherwise very little hope,” Bhika added.

Mande Toubkin, Netcare’s general manager of emergency, trauma, transplant and corporate social investment, explained that a long-distance ecmo retrieval for such a small patient requires meticulous planning and co-ordination from many specialised team members.

“An undertaking of this magnitude required the team members to move equipment for the procedure in KZN, and to transport little Kwandokuhle while on ecmo to Gauteng,” Toubkin shared.

Ndlovu recalled the anxious time. “It was so painful for us to see about 20 medical professionals around our small baby. After a four-hour procedure to prepare Kwando for ecmo, we were glad to hear it went well, and the next morning, the doctors said they were confident he was ready for the journey on ecmo,” Ndlovu said.

A complex journey across provinces

In Kwandokuhle’s case, he was put on veno-arterial ecmo life-support to allow his lungs to rest and recover, while supporting his heart throughout his ambulance journey from the local hospital to the airport in Pietermaritzburg, then on a medical evacuation flight to Lanseria and finally by ambulance to the receiving team at Netcare Waterfall City Hospital’s paediatric intensive care unit.

Ndlovu said: “We saw Kwando being put on the plane, and it was so hard for us not to be able to go with him. Our other twin first had to be discharged in KZN, so we had to wait to pick him up and get Kwenzo settled in with his grandparents, before we could drive up to Gauteng early the next morning to be with Kwando.”

Paediatric intensivist Dr Palesa Monyake recalled how desperately ill Kwandokuhle was when he first arrived at Netcare Waterfall City Hospital’s paediatric ICU. “A baby so young hasn’t had the chance to develop a strong immune system, so his body was fighting this ravaging lung infection on the one hand, while his little heart was also struggling due to the congenital defect. We were all extremely concerned for him, but we were determined to give him the best possible chance of survival,” Monyake shared.

Around the clock, the dedicated ecmo trained paediatric ICU (PICU) nurses and doctors did everything they could for Kwandokuhle, including the power of prayer. Although his condition on ecmo life support and medication remained serious, the Ndlovu family had to return home to KZN and Kwenzokuhle, visiting whenever possible. All the while, Monyake and the PICU team cared for Kwando as he remained sedated on ecmo.

“Eventually, after a difficult road, the day finally came when Kwandokuhle recovered sufficiently for us to take him off ecmo, but his lungs were still under strain because of his heart defect. He faced a last major hurdle – the time had come for the surgery to repair his heart,” Monyake said.

Ndlovu said they were in close contact with Monyake throughout, and they kept the family updated on everything. The family is also deeply grateful to all the doctors, the entire PICU and ecmo teams, which were incredibly professional, keeping the family in the picture every step of the way.

“Kwando had so many ups and downs in the two and a half months that he was with us, and at times, we didn’t know if he was going to survive. For all our knowledge and experience, God shows us His will, and Kwandokuhle suddenly bounced back like a champion,” Monyake said.

Successful surgery and steady recovery

Bhika explains that Kwando still had one more major hurdle to conquer – surgery to correct his congenital cardiac lesion, patent ductus arteriosus (PDA).

“Without surgery, a PDA can cause a significant increase in blood flow to the baby’s lungs, raising pulmonary arterial blood pressures, which in Kwandokuhle’s case could result in difficulty weaning him off the ventilator and a more protracted ICU course. Fortunately, Kwandokuhle’s PDA ligation procedure was successful, and he returned to the PICU, where under the constant care of specially-trained PICU nurses and Monyake, he was weaned off oxygen and began to gain weight healthily. This timely procedure likely prevented ICU complications and risks of further lung pathology,” Bhika.

When the Ndlovu family arrived to see Kwando the morning after his heart operation, they were relieved to see their son’s dramatic improvement. Having spent half his young life separated from his twin and parents while on life support, Kwandokuhle was finally well enough to return to KZN to a hospital closer to his family.

“We were very excited when it was time to bring him home. Kwandokuhle came back strong, he was even smiling, like a child should. Since the surgery, he has been doing very well, and he is playful, healthy and gaining weight. We are so happy, it is the greatest gift to have our twins healthy at home and reunited. We celebrated our first Christmas together as a family at home. Kwando and Kwenzo play together so beautifully, and we are recording these memories for the twins when they grow up,” the relieved father concluded.

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