By Melissa Meehan
A slight sniffle or cough can bring on an anxiety attack in an instant for Sarah Honeybone.
She lives on tenterhooks, forever scared that her one-year-old James will stop breathing again.
“I am so worried that he’s going to stop breathing, I’m still a little bit traumatised,’ the Seville mum explains.
“That image of James not breathing still sits there in the front of my mind.”
It was just one frightening chapter to a rather long journey but James is none the wiser – now happy and healthy – playing with his farm animals.
Their journey started when Sarah was just 13 weeks pregnant.
She went in for her usual scan and they found he had a large nuchal fold in his neck, and later found a abnormality in James’ heart.
The left side was marginally smaller than the right.
Already a mum to a 12-month old, Ebony, Sarah was sent to specialist in cardiology and genetics to get to the bottom of it.
All the scans came back clear and Sarah, who was booked to have James at the Angliss Hospital, was transferred to Mercy Hospital for Women and told it would be a long journey.
“We weren’t given any definitive answers, but they threw a diagnosis out there of hyperplastic left heart syndrome which needs many, many surgeries to survive,” she said.
“Even the chances of death or severe illness are extremely high.
“We were pretty broken by that.”
Faced with a rather life changing decision whether to proceed with the pregnancy, Sarah worried about Ebony.
She didn’t want her brother’s illness, and expected countless hospital stays and surgeries, to affect her life and learning.
“We had so many appointments and conversations based around medically interrupting the pregnancy, but before we could make a decision we needed a second opinion,” she said.
That’s when they met Dr Paul Brooks from Melbourne Paediatric Cardiology.
He did a scan on James’ heart and gave a realistic, but more optimistic idea of that to expect.
And he was almost certain that it wasn’t HLHS.
It was the news they needed.
Sarah was 23 weeks pregnant at the time, and they needed to make the decision whether to interrupt the pregnancy at 24 weeks.
They decided that James would fight.
At 27 weeks, Sarah lost her mucus plug and went into spontaneous labour.
By the time the paramedics had arrived, she was already starting to have contractions.
They raced for an hour to get to Mercy Hospital where they were able to stop the labour progressing.
But Sarah gave birth to James two days later on December 6, 2019.
He was immediately rushed to NICU and put on drugs to ensure his heart would survive until he was strong enough for surgery.
He was born at 27 weeks and 3 days, weighing just 1457 grams.
The Mercy Hospital would become the duo’s home until January when James was moved to the Royal Childrens Hospital.
They ruled his heart was functioning within a normal range and sent him back to Mercy Hospital to “grow big, fat and happy”.
He allowed to finally go home at 37 weeks.
But was rushed back to hospital three days later.
“He was diagnosed with bronchiolitis and had three episodes of apnoea and I had to perform CPR while we waited for the ambulance to arrive,” Sarah said.
“It was pretty scary – I had brought him to bed with me because he was snuffly and in the morning I noticed he was wuiet, unresponsive and grey \.”
Bronchiolitis, simply put, is a common cold.
This all happened in February and then the coronavirus pandemic hit in March.
“That for us was so scary, because we had seen what had happened to him with a cold – and we, honestly thought coronavirus would kill him if he contracted it,” she said.
He’s a happy and health one-year-old now – meeting all of his markers and milestones.
Sarah admits she’s still on tenterhooks, rushing to the doctors whenever he gets so much of a cold and self-isolating as a precaution during the pandemic.
But it’s all worth it – because through the hardship, she’s got her perfect baby boy.