Sinister reason behind baby’s snoring

Born full-term and “perfectly fine”, within a month Huey was becoming increasingly unsettled and unhappy, Jill told news.com.au, who “knew” at that point that “something was going on”.

“I went and saw numerous different doctors, went to a community health nurse, and they all said it was just normal, newborn behaviour and unsettledness,” she recalled, with other doctors suggesting it was “probably reflux”.

“He wasn’t just unsettled, though, he was also quite a noisy breather. He was snoring quite a lot and breathing through his mouth a lot as well, which is quite unusual for newborns.

“And there would be times where, if he was asleep during the day, he would wake up with quite high-pitched squeals, very suddenly at very random times, so there were quite a few indications that something wasn’t right.”

When Huey hadn’t gained any weight over a number of weeks, they were finally sent to a paediatrician — who after laying Huey down to have a look at him, “started getting a little bit flustered”.

After measuring Huey’s abdomen and his neck, the doctor “basically sat us down and said, ‘I’m really sorry, but I think your baby’s got cancer’”.

“We were flabbergasted. We just thought he had severe reflux and we needed some better medication or something,” Jill said.

“There was no indication, really, that it was this severe.”

The family were straight away sent to Sydney Children’s Hospital — a drive during which Jill remembers being in a state of “complete shock”, “definitely” thinking of the “worst case” scenario for her baby.

“It is a little bit of a blur. A lot of things happened quickly [when we arrived at Sydney Children’s Hospital], and that’s when you know that things are serious. When the hospital moves exceptionally fast, that means they’re worried,” she said.

A biopsy on Huey’s second day of hospital determined he had stage four S neuroblastoma, with an “inoperable” 5cm tumour on his neck, and cancer in his liver — causing the organ to grow to five times the size it was meant to be.

“So his treatment, the only option for him, was chemotherapy. He had eight rounds of chemotherapy over the course of about six, seven months,” Jill said.

Once that course of treatment ended, there were still spots within Huey’s liver, and cancer cells around his carotid artery.

But “over the course of the next year, we actually did see it continue to go away, even without chemotherapy, the cancer cells have appeared to have gone now”.

Asked what Huey, who’s now four-and-a-half, is like these days, Jill described him as “the light of my life, but he’s a handful”.

One impact of the chemotherapy, however, and one of the main reasons the family have long been involved in raising awareness and funds for the Children’s Cancer Institute, is that Huey has a speech delay.

“It’s getting much better, but he’s not where he should be. And that’s kind of one of the reasons — you can see with kids these protocols that have been around for 40 years, and the medicine’s been around for 40 years, that we really need these targeted treatment options for these kids,” Jill explained.

“And that’s where the Children’s Cancer Institute comes in, because that’s what they’re doing, right? How can we make the treatments for cancer more targeted so kids don’t receive as much harmful chemotherapy so it’s less intense and has less impact on their body.

“That’s the whole point and we are living that now. We’re living the fact that the neuroblastoma protocol for him, it needs to be improved. So that’s it, that’s why we do what we’re doing — to try and raise as much money for these brilliant minds.

“It’s the best thing ever to try to help these future kids.”

CEO Dare to Cure brings together leading CEOs and business leaders from across Australia to face a fear by taking on a dare, and at the same time, help cure childhood cancer.

This iconic early morning event will take place at Fleet Steps in Sydney’s Botanic Gardens on Tuesday, November 23 between 6am and 9.30am. All proceeds go to the Children’s Cancer Institute. To make a donation, visit ceodaretocure.org.au 

Originally published as Sinister reason behind baby’s snoring was neuroblastoma