TWELVE months ago, Bendemeer’s Andrew and Christie Powell were given the news that every new parent dreads – their newborn twin Wyatt was very sick and in need of surgery.
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Since then the couple, along with Wyatt’s twin Jack, two-year-old Riley and nine-year-old Monique, have learn- ed to live with, and learn a lot about, Noonan’s Syndrome – which affects any or all parts of the body – “the most common unheard syndrome of them all” according to emergency department (on leave) nurse Christie Powell.
Noonan’s Syndrome is a genetic condition – but the Powells weren’t carriers – “just a freak thing” Christie said.
Wyatt (named after the Wild West’s Wyatt Earp) was born with Noonan’s which affected his heart, kidney, gave him fluid on the brain, and lung issues.
“Cases range from mild to severe, and they rate Wyatt as moderate. He’s behind in all his development, which requires monthly trips to John Hunter to see various specialists. Last time he saw the heart specialist, they said his heart was getting worse.”
Wyatt endured his first surgery back in June, when a PEJ (Percutaneous Endoscopic Jejunostomy tube) for feeding into his intestine was inserted. And the day after his first birthday (August 27), he has an appointment with his John Hunter specialist to determine when he’ll have heart surgery.
He has a hole in his heart and a valve not working properly, lung issues, floppy airways and a floppy voice box, he gets severe reflux which ends up on his lungs and intestine (the reason for the PEJ tube into his intestine being fitted), is continuously hooked up to the feeding machine, he’s on medication to help that food go through faster, has a very low immune system, sleeps very little and requires 24-hour care.
“They were born at 30 weeks gestation at John Hunter, but Wyatt’s condition wasn’t picked up until I came back home to Tamworth. Jack on the other hand, except for having reflux, is a smart, healthy child.”
Christie said that her nursing background is one of the biggest things that’s got her through everything so far – well that and the “Bendemeer community and absolutely wonderful, most supportive family ever”.
“Mum (Kerrie Rule) and sister Melissa have been a tower of strength – mum especially. She’s been beside me all the way. Little old ladies drop in to take washing off the line – it’s been marvellous. Andrew and I would have been lost without them.“
While Christie isn’t at home tending her pre-school trio, she’s in Tamworth fulfilling Wyatt’s chiropractic, speech therapy, paediatrician, physiotherapy, and dietician appointments.
But on a daily basis, her day (after very little sleep) includes breakfast for the kids while tending to Wyatt’s medications, do Wyatt’s dressings (around his tube), morning naps for the twins, spend quality time with two-year-old Riley while they’re asleep, housework – then lunch.
“Like every family, evenings are the worst.”
She feeds and baths the kids while doing medications, does Wyatt’s dressings again, then by that time husband Andrew has arrived home from his mechanical business in Walcha, she’ll sit down and enjoy dinner with hubby.
Family and friends are organising a fundraising function at Bendemeer, at this stage it’s a two-day event September 19 and 20.