You would never know by looking at two-year-old Chloe Maddaloni that she had ever been anything but a healthy, normal child. Though a tiny toddler, she is tough. She likes running around at the park and gets herself into as much mischief as the next child. But when she was a baby, Chloe was very sick.
At four weeks old, she was diagnosed with congenital heart disease. Surgery was delayed for a month and so her mother, Squamish’s Annie Roy, took Chloe home. But Chloe’s colour changed drastically; she made strange noises, slept endlessly and didn’t want to feed.
“I always thought that having a sick child would be the worst thing that could happen to a mom,” said Roy.
Roy and Chloe’s dad, Matthew Maddaloni, rushed their baby back and forth to doctors. The doctors repeatedly told the new parents that the issues Chloe were experiencing were related to the heart defect, but Roy’s gut told her it was something more.
The first-time mom had to trust her instincts and become an advocate for her child.
“I pushed,” said Roy, with a laugh. “It was a survival mode. My only thing was to keep this baby alive.”
Further tests showed that Chloe had an extra bronchial tube and problems with her trachea, requiring her to be fed through a medical tube.
Roy said the trauma of Chloe’s condition took an emotional toll.
“I thought she was going to die every single day,” Roy said. “It was very, very hard.”
What compounded the stress was the fact that Roy had just started her own business, Annie Let the Dogs Out. She had planned on getting back to work soon after her baby was born, but instead, she spent most of her time at the hospital. Squamish doesn’t have staff or facilities to treat critically ill children, so Roy had many long nights away, sleeping close to Chloe, while her husband, also self-employed, kept the family financially afloat running his camera-rigging company.
Money became tight, quickly.
Roy had tried to put Chloe on her insurance plan, but because of the heart defect, the child couldn’t be insured.
The lack of insurance and loss of Roy’s income meant that the family couldn’t possibly afford all of the expensive medicine and feeding supplies for Chloe that weren’t covered under the family’s medical plan. The Variety Club stepped in and paid for those things, which was a huge relief, Roy said.
“I had nothing for her money-wise so the Variety Club -– they totally helped out a lot. Hundreds of dollars a month,” she said.
Ultimately, surgery helped to fix Chloe’s trachea problem and doctors later decided more surgery was not needed to fix the holes in Chloe’s heart. She will most likely still have one small hole in her heart for the rest of her life and an extra trachea, but overall, she has fully recovered.
Roy said that the experience made her realize how lucky her family is. “You become much more humble after this experience. My child is fine, but there were kids that were born with reversed hearts and all kinds of craziness,” she said. “There is much worse.”
Roy’s advice for other families who may be suddenly faced with a sick child is simple.
“Hold on, and trust your gut,” she said.
Over the past six years Variety has helped 18 families in Squamish.
The 49th annual Variety Show of Hearts Telethon airs Feb. 14 and 15 on Global BC, starting at 6 p.m. on Saturday and winding up at 5 p.m. Sunday evening.
