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‘Happy spilling’ hid Archie’s real diagnosis for more than 2 years

When Sam and Alyse’s infant son struggled with regurgitation and raspy breathing, they had no idea that it could be caused by an undiscovered heart anomaly.

Just a few years ago, 33 weeks into their pregnancy, Sam and Alyse thought everything was going perfectly. However, it was during a routine check that the midwife measured that their baby was significantly smaller than he should have been. 

“We were referred through for a scan, which is pretty standard procedure,” explains Sam, “and it was during this scan that they discovered our baby had a right aortic arch.” 

During fetal development, our aortas form an arch in our bodies, typically on the left side. Right-sided aortic arch is when it forms on the right instead. In isolation, this condition does not usually cause any problems, and many people live without knowing they even have it. 

Unfortunately, this diagnosis came as quite a shock to Sam and Alyse, as normally this kind of condition would be noticed during the 20-week anatomy scan. 

“We’re one of those cases they highlight when talking about the importance of finding these abnormalities early,” Sam continues. “After it was eventually spotted, we ended up being flown to Christchurch hospital for different tests. I think we did three trips in two weeks.” 

One of the routine tests following the diagnosis of a right aortic arch is called amniocentesis, which determines whether the baby has a chromosomal condition such as DiGeorge, Down or other possible syndromes. Typically, this test is done much earlier in the pregnancy – making it all the more difficult to go through at 33 weeks. 

To their relief, Archie’s test showed he had no chromosomal abnormality, and Alyse was able to give birth in Dunedin hospital instead of Starship. 

“They were concerned about how he would transition, and no one knew what effect the right aortic arch was going to have. Still, he came out screaming on day one of the August 2021 lockdown,” laughs Sam. “Which was an additional treat. Everything seemed pretty good – we knew that right aortic arch is a condition people can happily live with.” 

But it was as Archie grew older that he began to show some concerning symptoms. 

“He was a really raspy breather,” Sam recalls. “Once he started crawling, we thought ‘why do you sound like that?’ You didn’t need to wonder where he was if he was out of sight, because you could hear him.”

For his first 18 months, Archie struggled horribly with upper airway infections and ‘happy spilling’. 

“We went through multiple doctor visits and a couple of ambulance call outs. We spent a weekend in hospital because he kept vomiting, or regurgitating, anything he ate,” says Sam. “I think one day he’d spewed 20 times by lunchtime. He even struggled to breathe at night sometimes when he was panicked. But it was just written off as him being a ‘happy spiller’ and a noisy breather.

“To receive this lack of diagnosis, or one without medical explanation, was really difficult.” 

Archie’s symptoms continued to worsen, so Sam and Alyse began to push for more tests to be done. It was eventually discovered that Archie also had microtia and atresia, abnormalities in the ear where the outer ear and canal haven’t developed properly during pregnancy. 

“We were referred to the ENT team in Dunedin and we ended up going back to hospital multiple times,” his dad continues. “Sometimes his breathing would be so laboured and he’d be coughing so much that he was vomiting. It’s horrific as a parent to watch your child go through that and not have the answers.

“I had to push the ENT team to do more. We knew it wasn’t normal. So, they ended up doing a barium swallow test and it revealed an indentation on his esophagus and trachea.” 

Following this, Sam and Alyse wanted to further investigate Archie’s symptoms with a CT scan. His doctors were initially hesitant as CT scans can be quite difficult for young children, but they agreed.

Despite further testing, there seemed to be no traction in finding a solution for Archie’s symptoms. Sam and Alyse waited six months before they eventually pressed their ENT doctor through a letter. 

“He agreed to send our scan to the cardiac team at Starship,” explains Sam. “And almost immediately, when the specialist looked, he said ‘that’s a vascular ring.’” 

A vascular ring occurs when a part of the body's main artery, called the aortic arch, or its branches form a ring around the trachea or esophagus or both. This can cause problems with breathing and digestion – exactly the symptoms Archie had been experiencing. 

“The symptomatology was correct,” says Sam. “I had read about it before, and I knew that this was the most likely problem. He was essentially being choked from the inside.” 

After years without answers, Sam and Alyse finally felt some relief that a solution was within reach. At 2 years old, Archie was flown with his family to Starship and underwent open heart surgery to correct his vascular ring. 

“He’s been a different kid ever since,” his dad says. “He’s always been a super happy kid and loved riding his bike and running, but he was always held back by wheezing and puffing. But now there’s no stopping him. That’s why his grandmother thought it’d be fun for them to do MyMarathon together.” 

In May 2024, Archie and his grandmother Mary took on the brand-new event, MyMarathon, where they walked 43.8 kilometres together and raised over $3,000 in donations.  

“It was incredible to see Archie be able to do all the things his condition was holding him back from,” gushes Sam. “And both he and Mary were really proud of their efforts.” 

Since going through this journey with Archie, Sam is a big advocate for investing in heart research and specialist training for New Zealand cardiologists.

“The more that can be learned about heart conditions, the easier it will be to diagnose them,” he says. “Families like mine could have answers right away. I’m sharing Archie’s story as part of the Big Heart Appeal because I think it’s important to support the cause. That way, we can improve the heart health care New Zealanders have access to and help save lives.”