The son of Sam and Alyse Lee is already a Wānaka media identity, after he and his grandmother Mary Lee completed a 43.8km MyMarathon walk around Pembroke Park last year.
Every day in May, Archie and Mary walked or scooted some of their marathon to raise over $3000 in donations for the Heart Foundation.
Last night, Archie was scheduled to feature on Seven Sharp and now, he and his family get their chance to shine again in the Wānaka Sun.
Mr Lee said it was a battle to get health care in Wānaka and his family were happy to support good causes.
‘‘We are glad we could help them out,’’ he said.
When the young parents discovered their son was struggling with regurgitation and raspy breathing, they had no idea that it could be caused by an undiscovered heart anomaly.
Mr and Mrs Lee were 33 weeks into their pregnancy and thought everything was going perfectly. However, a routine check with their midwife picked up that their baby was significantly smaller than he should have been.
A scan, a standard procedure, revealed Archie had a right aortic arch.
During foetal development, aortas form an arch, 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.
The diagnosis came as a shock to Sam and Alyse, as it had not been picked up in their 20-week anatomy scan.
"We’re one of those cases they highlight when talking about the importance of finding these abnormalities early. 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," Mr Lee said.
Further tests followed, with no further abnormalities revealed, and Alyse was able to give birth in Dunedin hospital instead of Starship.
‘‘He came out screaming on day one of the August 2021 lockdown, which was an additional treat. Everything seemed pretty good – we knew that right aortic arch is a condition people can happily live with."
But as Archie grew older he began to show some concerning symptoms, including raspy breathing, upper airway infections and bringing up milk after feeds.
Mr Lee recalled multiple doctor visits and a couple of ambulance call outs, plus a weekend in hospital because Archie kept regurgitating his food.
‘‘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."
The Lees pushed for more tests and 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.
They were referred to the ENT team in Dunedin, resulting in even more hospital visits, while Archie’s breathing became more laboured.
Mr Lee said it was ‘‘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."
Next the Lees pushed for a CT scan. Six months later, they pushed their ENT specialist to send it to a Starship cardiac team specialist, who quickly identified Archie had 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 – symptoms Archie had.
"The symptomatology was correct. I had read about it before, and I knew that this was the most likely problem. He was essentially being choked from the inside," Mr Lee said.
A solution was within reach. Archie was just 2 years old when he had open heart surgery in Starship to correct his vascular ring.
"He’s been a different kid ever since. 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.
"It was incredible to see Archie be able to do all the things his condition was holding him back from, and both he and Mary were really proud of their efforts," Mr Lee said.
Mr Lee now advocates for investment 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. Families like mine could have answers right away,’’ he said.
