Miracle baby defeats rare birth defect
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Pretoria - In a a first for Gauteng and possibly South Africa, a baby born with his organs compressing his lungs has survived against enormous odds and is finally home.
However, the journey home included 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,” Nadia Greyling, the baby’s mother said.
She recalled the birth of her second son on April 15, 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. But not only has he survived, but all indications are that he is physically well and neurologically sound.
“This is an absolute miracle,” Dr Ashley Jeevarathnum, a paediatric pulmonologist practising at Netcare Clinton Hospital in Alberton, said.
Almost immediately after Ignus was born, the treating paediatrician in theatre found that he was not breathing as he should. He was rushed to the hospital’s neonatal intensive care unit for observation, and the then tiny baby was intubated and put on a ventilator to support his breathing. This was the first of many “lifelines” that would help sustain baby Ignus 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.
“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,” Greyling explained.
Jeevarathnum said 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 life support. It 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.”
The mother said the doctor called them, together with the team of specialists, and explained that their baby was not doing well at all. He needed to be put on a specialised machine 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,” Greyling said.
Jeevarathnum explained: “Although membrane oxygenation life support 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.
“This type of life support for a neonate with congenital diaphragmatic hernia 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.”
Baby Ignus had a team of about 10 specialist doctors, including a neonatologist and paediatric intensivist who took care of him.
The highly specialised team worked together in the delicate procedure to insert the oxygenation life support cannula into the baby’s chest, before surgery was undertaken to correct the birth defect.
Neonatal intensive care nurse Zinhle Moyo recalled 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,” she said.
Paediatric ICU nurse Khanyi Ngobese said nursing Ignus required everyone to “think 10 steps ahead”.
“Even when I was at home, I had to know how he was doing, and made the unit promise to call me if there was any change in his condition or any advice they needed,” Ngobese said.
But, following his harrowing ordeal, the little boy had recovered and could go home a few days ago.
Jeevarathnum said Ignus’s story has raised the bar for South African neonatal care.