In a first for Gauteng, if not South Africa, a baby born with his organs compressing his lungs has survived against enormous odds and is finally home after two months of tireless efforts and prayers from a highly skilled team of paediatric and neonatal specialists, nurses and the loving family of Baby Ignus.
“The first cry of your newborn baby is the most beautiful sound ever. My husband and I nodded at each other. We had no idea of what was waiting for us,” says Nadia Greyling, recalling the birth of her second son Ignus on 15 April this year, before it was discovered that he had a life-threatening internal birth defect.
“The overall chance of survival for Ignus, all things considered, was extremely low, if not non-existent. Not only has he survived, but all indications are that he is physically well and neurologically sound. This is an absolute miracle,” says Dr Ashley Jeevarathnum, a paediatric pulmonologist practising at Netcare Clinton Hospital in Alberton.
Almost immediately after Ignus was born, the treating paediatrician in theatre found that Ignus was not breathing as he should. He was rushed to the hospital’s neonatal intensive care unit (NICU) for observation, and the tiny baby was intubated and put on a ventilator to support his breathing – the first of many ‘lifelines’ that would help sustain him in the fight to save him over the coming weeks.
“The next morning, neonatologist Dr Klaas Mnisi explained to us that Ignus had something called a congenital diaphragmatic hernia [CDH]. Inside my baby’s body, there was a large hole in the muscle that separates the chest from the abdomen, allowing his abdominal organs to push through the muscle and compress his lungs,” Nadia explains.
Dr Jeevarathnum says that Ignus did not respond to the initial therapeutic measures as hoped. “The pressures in his lung were exceptionally high, a condition known as pulmonary hypertension, and all life and respiratory support measures had failed. For any chance of saving his life, the therapy had to be escalated to extracorporeal membrane oxygenation [ECMO] life support. ECMO is a highly specialised process where a machine artificially performs the functions of the heart and lungs, 24 hours a day for 12 days, in Ignus’ case.
“Dr Ashley [Jeevarathnum] called us together with Ignus’ team of specialists and explained that our baby was not doing well at all. He needed to be put on a machine called ECMO to help give his lungs a chance to rest before he would be ready for surgery. At that moment, it felt as if someone had pulled the whole world out from under my feet, but we were desperate to give Ignus a chance,” Nadia remembers.
|Relieved mother Nadia Greyling was finally able to hold her baby son Ignus for the first time six weeks after he was born with a life-threatening condition, congenital diaphragmatic hernia (CDH). A team of doctors and nurses at Netcare Clinton Hospital worked tirelessly to provide the highly specialised care Ignus needed, including two weeks of extracorporeal membrane oxygenation (ECMO) life support followed by surgery to close the hole in his diaphragm to prevent pressure on his lungs.
|Proud parents Nadia and Phillip Greyling were delighted when their son Ignus was well enough to be discharged home from Netcare Clinton Hospital. Due to the severity of the condition with which he was born, doctors were initially most concerned about Ignus’ chances of survival, but are delighted that he has beaten the odds and is making excellent progress.
“Although ECMO is well established in adult care in South Africa, and is a very good therapeutic strategy, it comes with huge risks for a neonate, or newborn baby. ECMO for a neonate with CDH is internationally known to be notoriously difficult, however it was the best option available to support his vital functions and get him well enough for surgery,” Dr Jeevarathnum says.
Tiny baby Ignus had a team of about 10 doctors including neonatologist Dr Mnisi, Dr Jeevarathnum who was in charge of the intensive care and ECMO, paediatric intensivist Dr Linda Doedens, paediatric nephrologist Dr Sanushka Naidoo, as well as paediatric cardiothoracic surgeon and ECMO specialist Dr Krubin Naidoo from the Nelson Mandela Children’s Hospital who assisted with the delicate procedure to insert the ECMO cannula into the tiny baby’s chest, paediatric surgeon Dr Charles Carapinha who would perform the surgery to correct the birth defect, and the paediatric anaesthetic team, Dr Phillipa Penfold and Dean Nolte, who assisted with the anaesthetic during all the delicate surgical procedures.
NICU nurse Sr Zinhle Moyo recalls the immense concern for Ignus. “After his birth, the little baby was blue because he wasn’t getting enough oxygen. We were so worried about him. When the decision to try ECMO was taken, two paediatric ICU nurses who have experience with nursing children on ECMO came to assist us in caring for Ignus in the NICU.”
Paediatric ICU nurses Sr Khanyi Ngobese and Sr Palesa Mabuya adjusted quickly to the NICU’s processes and support structure, while caring for Ignus around the clock. “ECMO is very specialised and one of us with the proper training and experience was needed to be there at all times. We’ve nursed many bigger children on ECMO but never before have we looked after such a small baby with CDH,” Sr Mabuya says.
Sr Ngobese, affectionately known as ‘Gogo Khanyi’ with some 36 years’ nursing experience both in South Africa and abroad, says nursing Ignus required everyone to “think 10 steps ahead”. “I think the NICU nurses found ECMO a bit overwhelming at first, as they had no previous experience with the process, but I was so proud of how they embraced it,” she says.
Sr Moyo adds: “I had read the theory on ECMO, but we had never nursed a baby on ECMO in the NICU before, and it is quite different in real life when you see that little baby connected to that big machine. I learned so much, and with this experience I won’t feel so daunted next time we have a neonate requiring ECMO in our unit.”
“When you take up a career in nursing you are making a promise to God that you will do everything to save a patient’s life. Even when I was at home, I had to know how he was doing, and made the NICU promise to call me if there was any change in his condition or if there was any advice they needed,” said Sr Ngobese, who worked nightshift watching over Ignus.
Ignus’ mother remembers that anxious time vividly: “At one stage I counted eight or nine lifelines connected to his little body, anything from drips, the ECMO machine itself, haemodialysis, a ventilator with nitric oxide and an oscillator. Every move that Dr Ashley made was carefully calculated and discussed with a team that was highly qualified in areas that I can’t even pronounce,” Nadia says.
After almost two weeks on ECMO, the specialists agreed that Ignus was in a better condition for the surgery to repair the hole in his diaphragm that would keep his abdominal organs, including his intestines, liver and spleen, in their correct anatomical position to relieve the pressure on his lungs.
Paediatric surgeon, Dr Carapinha, who was part of the team treating Ignus from the day he was born, performed the crucial operation to correct the life-threatening CDH. “We had been quite concerned about Ignus in the first week or two, however his condition stabilised on ECMO sufficiently for the procedure to go ahead,” Dr Carapinha says.
“Ignus’ lungs and their blood vessels were under severe pressure due to his abdominal organs pushing through the large hole in his diaphragm. During the operation, a special patch of collagen was used to close the hole in his diaphragm, as this creates a biological seal that is as natural as possible for a growing baby.
“Throughout, Ignus’ parents were very much at the centre of the team. They were fully informed of the potential risks involved at each stage, transparently and objectively. To my knowledge, Ignus is the first baby born with CDH in South Africa, that has completed ECMO and subsequently went on to have a successful diaphragmatic hernia repair. He has tolerated the procedure well, and his progress has been remarkable. Our ‘Little Soldier’ was ready to go home, at last,” Dr Carapinha says.
“Six weeks – 1 008 long hours since he was born – I could hold my baby for the first time. What an amazing feeling,” Nadia remembers.
Ignus’ parents thanked all the specialists, in particular Dr Jeevarathnum who she says stayed by Ignus’ side often until the early hours of the morning, as well as the entire team of medical professionals, nurses and staff at Netcare Clinton Hospital who had helped in pulling Ignus safely through.
“The biggest gift someone can receive is probably the gift of life. At some point, I thanked Dr Ashley for what he has done so far, and I said that he had performed a miracle. His words will stay with me for a long time, and carried me through days and nights of uncertainty: ‘Christ performed the miracle, he just used my hands’.”
Dr Jeevarathnum adds: “Ignus’ story has raised the bar for South African neonatal care, showing that we can reach international standards of medical care for our children and achieve good outcomes even for highly compromised babies. These world-class interventions are available in our country, and with the collective efforts of a dedicated multi-disciplinary team, Ignus’ excellent recovery has proved what is possible.”
For more information and support regarding Congenital Diaphragmatic Hernia visit www.cdhi.org
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