Gauteng miracle baby survives after being born with rare internal defect

Nadia Greyling with her 'little soldier' Ignus.
Nadia Greyling with her 'little soldier' Ignus.
Image: supplied

Ignus Greyling may be Gauteng’s, if not SA’s, first baby born with his organs compressing his lungs to have survived against enormous odds.

The infant is finally home after two months of treatment by a team of paediatric and neonatal specialists and nurses

His mother, Nadia Greyling, said she had no idea what awaited her when Ignus was born on April 15.

“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 Greyling.

Dr Ashley Jeevarathnum, a paediatric pulmonologist practising at Netcare Clinton Hospital in Alberton, said the overall chance of survival for Ignus 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.”

Almost immediately after Ignus was born, the treating paediatrician in theatre found he was not breathing as he should.

He was rushed to the hospital’s neonatal intensive care unit (NICU) for observation, and was intubated and put on a ventilator to support his breathing. These were the first of many “lifelines” that would help sustain him during 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,” said Greyling.

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

Ignus did not respond to the initial therapeutic measures as hoped.

“The pressures in his lungs 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’s case,” said Jeevarathnum. 

 “Although ECMO is well established in adult care in SA, 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,” said Jeevarathnum.

NICU nurse Zinhle Moyo recalls the immense concern for Ignus.

“After his birth, the 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 Khanyi Ngobese and 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,” said Mabuya.

Ngobese, affectionately known as Gogo Khanyi, with 36 years’ nursing experience both in SA and abroad, said 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.”

Moyo said she had read the theory on ECMO but had never nursed a baby on ECMO in the NICU.

It is quite different in real life when you see that little baby connected to that big machine.
Nurse Zinhle Moyo 

“It is quite different in real life when you see that little baby connected to that big machine. I learnt so much, and with this experience I won’t feel so daunted next time we have a neonate requiring ECMO in our unit.”

After almost two weeks on ECMO, the specialists agreed Ignus was in 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 Charles 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.

“Ignus’s 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.

“To my knowledge, Ignus is the first baby born with CDH in SA who 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,” said Carapinha.

“After six weeks — 1,008 long hours since he was born — I could hold my baby for the first time. What an amazing feeling!” Greyling said.

Jeevarathnum said the infant’s story raised the bar for neonatal care in SA.

“It showed 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 multidisciplinary team, Ignus’s excellent recovery has proved what is possible.” 

TimesLIVE


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