A couple who were diagnosed with the rare condition of their ‘miracle baby’ using cutting-edge technology said it was ‘essential’ that all other parents in Ireland had the same chance as them.
Ergal and Gillian Davey were 17 weeks into their first, desperately wanted pregnancy when they decided to book a gender recognition scan. The couple had been trying to have a baby for eight years.
However, their excitement turned to shock when the scan revealed a number of anomalies.
Her son, Baby Isaac, had large heart chambers and abnormal kidneys.
“You didn’t give us much hope, to be honest,” Mr Davey said, “but he was born perfect.”
Isaac was delivered eight weeks early. Initially, there was talk of sending him home with oxygen tanks and feeding tubes. The new family was at Temple Street Children’s Hospital from October to December last year. But despite multiple surgeries as a newborn, Isaac defied doctors with his strength and resilience.
Even a day after his meningitis, which required a blood transfusion, Isaac was back on his bottle. Mr Davey said his son’s strength had been “amazing”.
“He’s just amazing, he’s done things no one expected him to do,” said Mr Davey. “He shocked everyone, he shocked them all.”
Both of Isaac’s parents are bursting with pride, saying that without him they would be lost.
Since the 17-week scan when Isaac’s anomaly was first discovered, both Fergal and Gillian had no idea what condition Isaac was in.
A genetic test at 17 weeks was too risky because Isaac was too small. Mr Davey said it was unbearable not knowing what chances his son would have, both during the pregnancy and in the early days of his life.
“We had no idea. It was torture. We would wonder what each day would bring and what would happen that day. It wasn’t pretty, it was tough,” Mr Davey said.
Because they had Isaac at the National Maternity Hospital on Holles Street, the Wicklow couple had access to a genetic test when Isaac was 17 days old. The genetic test revealed that he had a very rare condition called CRB2 ventriculomegaly and cystic kidney disease.
Mr Davey believes that if the couple had not had access to the genetic test they still would not know what condition Isaac was in.
He said he knows of cases where children could be toddlers or even older before being diagnosed.
“It is wrong that not everyone has access to it. The idea that if you lived around the corner from another maternity hospital, even another maternity hospital in Dublin, and you didn’t have that, that’s wrong,” said Mr Davey.
“Surely everyone should have the same chance as us? It is not knowing that is so difficult for parents. In terms of funding, we’re talking about little babies here. Whatever money they need to offer this service to everyone.”
https://www.independent.ie/irish-news/everybody-should-have-the-same-opportunity-parents-of-miracle-baby-isaac-on-the-cutting-edge-technology-that-saved-his-life-41909077.html ‘Everyone should have an equal opportunity’ – Parents of miracle baby Isaac on the cutting-edge technology that saved his life