Family devastated after newborn diagnosed with rare genetic condition: 'Knowing what's coming is heartbreaking'

Picture: The Herring family are adjusting to the heartbreaking news
Picture: The Herring family are adjusting to the heartbreaking news 

For parents Jessica and Dominic Herring, all appeared to be well after delivering their second baby, Noah, in November. 

But as Jessica was being tended to after having a C-section, and Dominic took the bub to be measured and weighed, his new baby glow turned to absolute panic.

"After they'd finished weighing him, he changed colour completely and stopped breathing," Dominic said.

Picture: Jessica and Dominic with Noah in hospital
Picture: Jessica and Dominic with Noah in hospital 

"The nurses pressed the buzzer and within 20-30 seconds 10 to 15 doctors were all in there working on him trying to stabilise him." 

"Jess was still the getting surgery done and you just sit there, helpless. The doctors are running around you and you're just watching your little baby be prodded and there's needles and charges… it was pretty full on."

It was just the beginning of a heartbreaking ordeal for the couple, who are also parents to three-year-old daughter Rita.

Noah was transferred to the Royal Hospital for Women and they were told he had fluid build ups in his body, including his lungs which had to be drained. What followed was more than two weeks of testing, before a genetic test revealed their baby had GM1 Gangliosidosis.

​The rare genetic condition causes a progressive decline as nerve cells destroy the brain and spinal cord. It can cause deaf and blindness in babies and many infants do not live beyond two years. 

He spent weeks in hospital, with the couple having to split their time between caring for Noah and Rita, who was unable to visit due to COVID-19 restrictions.


Jessica said it had been an agonising wait to find out what was wrong, but they could never have imagined it would be this. 

"We were just hoping for some good answers, we weren't expecting any of that. We didn't know anything about the condition before this, the doctors told us only one in 100,000 kids get it."

While the couple don't know how Noah's condition will progress, as the onset of symptoms and the pace of decline varies for every child, they know they're living their best moments now.

"What we have been told is that we'll have a good six months with him, roughly. It all depends on what happens with his body. We'll have a good window for him to be as normal as possible and do what babies do," Jessica said.

"After that his nerve cells will start to destroy his body and he will become quite weak. We do more is coming, but not the full extent because it varies with each child."

"He's just a beautiful boy and at the moment it's so conflicting seeing him as he is normal and developing, it's really hard to understand and know this is coming. He has so much to offer."

Noah was released from hospital just in time for Christmas and the family are enjoying some much needed bonding as they try to make the most of the time they have.

While coping at the moment, both said it has been a difficult experience, with the pair initially unable to eat or sleep. 

"I think it took us a long time to get to this point, we're OK now, but two weeks ago we were a mess, we didn't know how to handle it suppose," Jessica said.

"And the pain and suffering he's going to go through, knowing what's coming to him is heartbreaking."

To help the family maximise their time with Noah, Jessica's mum Sonia set up a GoFundMe page, with an initially modest goal of raising $1,000. It has since trumped this to sit at more than $41,000. 

"It was set up just in the hope to raise awareness for this condition, and also to help us and support us, especially if Dominic needs to take time off work and spend time with Noah, because time is precious at this stage. And if Noah ever needs anything to support him," Jessica said.

"We've been overwhelmed (by the response), it's been amazing and I can't thank everybody enough."