14-month-old Camden Boutilier was born with a congenital tumour, and her parents were told she would need surgery right away. Ashley & Jonathan relocated from Grande Prairie to Edmonton to prepare for Camden’s birth.
Camden spent a few weeks in the NICU after recovering from life-saving surgery, before heading home to Grande Prairie. As new parents, Ashely & Jonathan were amazed at how well she slept and how much noise she was able to sleep through.
“She slept through some big Alberta storms, the dog barking – she didn’t flinch,” explained Mom Ashley.
“NICU babies are really used to sounds and beeps, so I didn’t really question it at first, but about a week after being home, as a nurse, I started to wonder and ask some questions.”
Ashley recalled that due to Camden’s unique medical situation, she hadn’t had routine newborn hearing screening while in the hospital.
“We contacted local public health about a hearing screening, and while we waited we tested out all sorts of sounds – shaking keys, banging pots, etc. By the time we had her appointment at five weeks, we knew she had hearing loss of some type.”
Camden has a rare type of hearing loss called Auditory Neuropathy – meaning the ear successfully detects sound, but has a problem sending that sound to the brain.
“Most often hearing loss isn’t really detected as early as we found it,” Ashley explains.
The Boutilier family got ready to pack their bags and head back to Edmonton to meet with a team of specialists.
But when they arrived at the Ronald McDonald House, they received a call: in checking Camden’s auditory nerves to see if she was a candidate for cochlear implants, they found the tumour on her spine had recurred and she was booked into emergent surgery.
“Again, we were able to be close to where she was having surgery,” Ashley says. “Jonathan had a place to stay because only one parent was allowed at the hospital due to COVID. I could go back to the House to nap, shower, and go back to the hospital when I was ready.”
“An Airbnb, apartment, or hotel isn’t home,” Ashley explains. “It has what you need, but you don’t have the experience of the Ronald McDonald House, the comfort of just knowing you’re in this safe, compassionate space.”
“It became this place to socialize and share stories – a great support group with families, a therapy session for your mental health in some way,” adds Jonathan.
“Family Services know your story, the staff live it – they live the family’s journey with them,” Ashley says. “They see it day to day, they can tell when you’re having a good or bad day. That was so pivotal in our journey with the Ronald McDonald House – the fact that we could be real.”
After Camden’s surgery, Ashley & Jonathan got the news that she was a candidate for cochlear implants.
“We’re both hearing, so it was a happy feeling to find out she was a candidate,” Ashley explains. “We knew we could communicate with our child whether it was spoken language or sign language, but knowing she was a candidate for this amazing medical technology allows her the option to hear sound.”
“She’s always going to be deaf, we’re just giving her the ability to have more than one way to communicate if she chooses.”
Camden had her cochlear implant surgery about six weeks ago, and the implants were activated just a couple of weeks ago; a special milestone for the Boutilier family during Deaf Awareness Month. Her parents say she was overwhelmed at first, but then smiled and laughed. She is especially learning to enjoy the sounds from musical instruments, such as maracas and a drum.
“We’re looking forward to those milestones – we aren’t taking these milestones for granted,” says Ashley.
The Boutilier family has spent 46 nights at RMHC Alberta, over several stays – with more expected stays in the future.
“During this journey, the Ronald McDonald House has walked this path with us – in the dark times, they gave us light,” says Ashley.
“The Ronald McDonald House is like a safety net, just there to listen, support, and sit beside us,” adds Jonathan. “You get to know the staff so well, you get excited to see them. They’re like the family you never knew you had.”