'An absolute miracle': Local baby born with severe birth defect survives against enormous odds

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Home at last for 'little soldier' after newborn ECMO, major surgery and nine 'lifelines'
Home at last for 'little soldier' after newborn ECMO, major surgery and nine 'lifelines'

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 specialists, 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," said Nadia Greyling, recalling the birth of her second son, Ignus, on 15 April, 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," said 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. 

Also see: It's not all negative: The experiences of parents with a newborn during Covid-19 lockdown

'Someone had pulled the whole world out from under my feet'

"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," Greyling explained. 

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. Jeevarathnum explained.

"Dr. Ashley [Jeevarathnum] called us together with Ignus' team of specialists and explained that our baby was not doing well at all," Greyling shared. "It felt as if someone had pulled the whole world out from under my feet, but we were desperate to give Ignus a chance."

Read: Your baby's brain explained | A Parent24 Series

'I counted eight or nine lifelines connected to his little body'

Although ECMO is well established in adult care in South Africa, it comes with huge risks for a neonate with CDH and is internationally known to be notoriously difficult.

However, Dr. Jeevarathnum was sure it was the best option available to support baby Ignus' vital functions and get him well enough for surgery.

Tiny baby Ignus had a team of about 10 doctors who all worked together tirelessly to save his life.

NICU nurse Sr Zinhle Moyo recalls the immense concern for Ignus commenting, "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." 

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". 

"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 the night shift watching over Ignus. 

Ignus' mother remembers that anxious time vividly revealing, "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."

mother and son
Nadia Greyling holding newborn son, Ignus.

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. 

"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. 

Also read: 'Our lives changed just like that': A child's journey to recovery

'1 008 long hours...'

"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," Greyling remembers.

Dr. Jeevarathnum added that Ignus' story "raised the bar for South African neonatal care", showing that international standards of medical care are attainable. 

"Ignus' excellent recovery has proved what is possible." Dr. Jeevarathnum concluded.

"The biggest gift someone can receive is probably the gift of life." Greyling added. "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'."

Submitted to Parent24 by Netcare.

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