He might look like your average wriggly, playful toddler, but 20-month-old Bowie Macmillan is no regular tot – he’s a battler baby who fought back from heart failure!
Born in Auckland in April 2015, Bowie was a normal, albeit hungry, wee boy. But it wasn’t long before his attentive parents Tony and Sarah soon spotted something out of the ordinary.
Alarm bells were raised when he was just two weeks old and mum-of-four Sarah, 40, began to notice Bowie didn’t behave like her other children. “The main thing was Bowie hating the car seat,” she explains. “Our three older ones loved the lying-down position, but within five to 10 minutes of putting him in the capsule, he’d be screaming.”
Sometimes, Bowie would gag, then shriek until an older sibling unbuckled him or Sarah was forced to pull the car over. Also concerning was his reaction to bathtime. Sarah tells, “Every time we put him in the bath at night, his breathing was really rapid. We have an asthmatic, so we know that’s not OK.”
The concerned mum, who manages Pavilion Jewellery along with her husband, told her midwife, “There’s something not quite right,” yet the baby expert checked Bowie with a stethoscope and could find nothing irregular.
After sickness swept through the family, Sarah – also mum to Renée, 14, Halen, 13, and Éde, 11 – worried her youngest son had whooping cough as he wouldn’t settle, sweated profusely on even the most mild days and produced large amounts of green mucus.
One night, Sarah found Bowie with bubbles coming from his nose and mouth. She recalls, “They were huge, like he had fluid on his lungs, so I took him to the doctor, who told me we should go to the hospital just to be safe.
I said to the doctor, ‘I want a chest X-ray done.’ He said, ‘Yeah, so do I.’ He didn’t tell me, but he heard a slight murmur and he didn’t want to worry me. I was just hoping for them to find something – I didn’t care what they found.”
At Auckland’s Starship children’s hospital, an X-ray revealed Bowie’s heart was enlarged. He was eventually diagnosed with the rare condition acyanotic tetralogy of Fallot, with a 6mm hole in his right ventricle.
Bowie needed surgery, but a week before he was due to have the operation, he suffered heart failure. Fortunately, a course of diuretics cleared it up. Sarah recalls, “He had been feeding longer, sweating heaps more, and not doing much besides cuddling and sleeping, but that made him a little livelier again.”
Now doctors needed Bowie to gain weight – and Sarah did it with demand-feeding. She explains, “My goal was not to give him extra supplements. I was feeding him whenever he was awake and wanted it, which ended up being every three hours. I fed him until he got to the weight he needed to be.”
Sarah’s scheme worked and Bowie was able to undergo surgery to repair the hole in his heart.
“It was scary letting him go that morning,” she says, “but he was out of surgery by 12.30pm. Our kids asked lots of questions and took photos of Bowie hooked up to all these machines in ICU to share with their friends. Bowie was awake by 5pm that same day, which was awesome.
“The good thing is, with Bowie, his pulmonary artery, which would normally be narrow, is big and fat, so it didn’t get damaged in the surgery. He won't have to have another operation, as far as we were told.”
Bowie’s dad Tony, 47, adds, “It’s common for heart babies to need additional surgery around ages 14 and 40, so we’re really lucky. The doctors don’t tell you that it could get damaged until after the surgery – they don’t like to worry you more.”
It’s been a tough journey, but life has now returned to normal for the family, with a small scar on his chest the only sign of Bowie’s struggles. Sarah thanks Starship’s team of Heart Kids volunteers for helping the family.
“They popped in every day to check on how everything was going and gave us the most awesome support.”
And her advice for mums who suspect their newborns may be ill? “Trust your instincts. If something is not right, follow your gut.”
Text: Fiona Connor.
Pictures: Robert Trathen.
Hair & Make-up: Claudia Rodrigues.