Medical miracle baby making up lost time with twin brother and parents

First-time KwaZulu-Natal parents Andile and Minenhle Ndlovu have had more than their fair share of sleepless nights since the birth of their twin boys Kwandokuhle and Kwenzokuhle in April.

The couple from Mpophomeni, outside Pietermaritzburg, endured months of uncertainty that tested their faith after Kwandokule spent months fighting for his life without his family in a paediatric intensive care unit in Gauteng.

But their story had a happy ending and they are slowly getting accustomed to having the twins sleep under the same roof.

“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,” said Andile Ndlovu, 31.

While both twins tested positive for respiratory syncytial virus (RSV), doctors also discovered a hole in Kwando’s heart which complicated his condition.

Kwenzo remained stable in the local hospital but his identical twin’s condition deteriorated, prompting doctors to transfer him for specialised care to 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 said.

The KwaZulu-Natal transport department administration clerk said he and his wife were overwhelmed and scared, but had faith that the specialists in Gauteng could help their son.

Cardiothoracic surgeon Dr Sharmel Bhika, who operates an ECMO retrieval service specifically for children like Kwando who are too critically ill to be transferred by conventional ambulance services, was brought in.

“High pressure positive-pressure ventilation, lung overdistension and high inspired oxygen concentrations can all lead to secondary lung injury, which increases the risk for multi-organ injury and dysfunction.

“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,” said Bhika.

ECMO is only considered in life-threatening circumstances for young children, and paediatric ECMO transfer is a highly specialised and complex service.

“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,” she said.

“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,” said Mande Toubkin, Netcare’s GM of emergency, trauma, transplant and corporate social investment.

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

—  Andile Ndlovu, father

“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,” Andile said.

Kwando 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 Airport and finally by ambulance to the receiving team at Netcare Waterfall City Hospital’s paediatric intensive care unit (PICU).

“We saw Kwando being put on the plane, and it was so hard for us not to be able to go with him. Kwenzo first had to be discharged in KZN, so we had to wait to pick him up and get him 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 was concerned when she received the desperately ill Kwandokuhle at the paediatric ICU at the Netcare Waterfall hospital.

“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,” she said.

Though his condition on ECMO life support and medication remained serious, the Ndlovu family had to return home to Kwenzo and work, visiting whenever possible.

In the interim 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.

“We were in close contact with Dr Monyake throughout, and they kept us updated on everything,” Andile said.

“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.

And then came the heart surgery.

“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,” cardiothoracic surgeon Bhika said.

We are so happy, it was the greatest gift to have our twins healthy at home and reunited and we celebrated our first Christmas together as a family at home.

—  Andile Ndlovu, father

The two-and-a-half hour procedure was a success and the infant returned to the PICU, where under the care of 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 said.

When the Ndlovu family arrived to see Kwando the morning after his heart operation, they were relieved to see his dramatic improvement.

Having spent half his young life separated from his twin and parents while on life support, he was finally well enough to return to a KZN hospital in August where he spent two weeks recovering. At the beginning of September he was discharged.

“We were very excited when it was time to bring him home. Kwandokuhle came back strong, he was even smiling — like a child should.”

“We are so happy, it was the greatest gift to have our twins healthy at home and reunited and we celebrated our first Christmas together as a family at home,” Andile said.

The relief in his mother’s voice is palpable.

“It was so difficult to be at home with Kwenzo and not think his brother was not there. But I had to stay strong and I believed Kwando would be back home,” Minenhle said.

“He is playful, healthy and gaining weight. He is a little behind on his milestones, but the doctors say he will get there in time,” she said.

Minenhle says for now the two are full of smiles, particularly when they are eating.

“Kwando is still on soft foods and his favourite is fruit.”

The 28-year-old mother, who put her business studies on hold, says she will likely focus on her children for the rest of this year before studying again.

Both credit their family and their church for supporting them emotionally through their son’s medical challenges.

“He is our miracle child who fought for survival. Kwando came back home thanks to the doctors and nurses, but also on the prayers of our friends, our church and our community,” Andile said.

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