Apr 22, 2020
greater than her diagnosis
“There’s never a day when Isabella doesn’t have her diagnosis.”
Every day, there are things the Collier family has to consider that other families take for granted: If there’s a fire alarm, will Izzy be able to hear it? If her dog isn’t around to warn her, how will she know someone is at the door? What adjustments need to be made at school and band practice so she can participate?
“She has to work harder than everyone else just to be considered ‘just as good’,” says her mom, Nikki.
Yet, despite being deaf – or perhaps because of it – 12-year-old Izzy is an independent, outspoken kid who embraces her uniqueness.
The day Nikki and Josh brought baby Izzy – their first child – home from the hospital, she stopped breathing and turned blue. They called an ambulance and rushed her to Dayton Children’s. She was having a cyanotic episode, in which a baby turns blue due to low oxygen levels. Tests revealed she had a heart condition - pulmonary artery stenosis – a narrowing of the artery that delivers blood to the lungs. With support from their cardiology and pulmonology teams, Izzy seemed to outgrow her heart condition.
However, small clues indicating there may be something else wrong continued to nag at the family. At age 3, Izzy still wasn’t talking. As a new mom, Nikki assumed this was fairly normal, until Izzy failed her hearing test at her annual well-check. The audiologist at Dayton Children’s diagnosed her as profoundly deaf due to fluid and pressure her ear canals. Once the fluid was drained, Izzy’s hearing improved a bit. But she still needed hearing aids – first in one ear, then finally in both.
“I remember the day she got her first hearing aid,” says Nikki. “That day, Izzy said ‘I hear a train!’ We live right by a set of train tracks and a train goes by at least five times a day, but she had never noticed it before."
"As a parent and as a hospital employee, I want this hospital to be amazing for my kids and for every kid who comes here. I realize how lucky we are to have two healthy kids, and I think to myself ‘What if I wasn’t so lucky?’ There are a lot of kids at Dayton Children’s and in our community who need a lot more help. There is so much more we can do for them.” -Nikki Collier, Izzy’s mom.
A few years later, another clue – Izzy was still very small for her age. Her parents took her to see a nutritionist at Dayton Children’s, who encouraged them to track her meals. Izzy was eating plenty, so why was she so small? At her pediatrician’s urging, Nikki and Josh had genetic tests run on Izzy. The tests confirmed that she has DiGeorge syndrome. “Suddenly it all clicked into place,” says Nikki.
DiGeorge syndrome is a chromosome deletion syndrome that can cause congenital heart problems, specific facial features, frequent infections, developmental delays, hearing impairment, and cleft palate, among other symptoms.
Izzy’s deafness, heart condition and small stature were all clues to her genetic condition. But Izzy is far more than her diagnosis. “She’s a lot of personality in a little package!” laughs Nikki.
“I don’t think I really have more of a challenge then other kids,” says Izzy. “I do extra things, like a hearing check every morning, but I can hear teachers coming when other kids can’t because of my FM (hearing aid) system, so I can give the kids a heads up!”
And she’s accomplished amazing things. She’s fiercely independent, a great athlete, and a talented musician. Recently, she performed her first clarinet solo with her school band, and she hopes to join marching band next year.
“My favorite things to do are art, creating things, running club and spending time outside,” she says. “I would like to be an intervention specialist, a waiter, or an athlete.”
Although she will always have her diagnosis, and it often may dictate how she goes about her day-to-day life, it will never define her.