Lifelong patient with rare congenital condition honored as a Patient Hero
At one day old, Naomi was diagnosed with a congenital laryngeal web.Dec 17th, 2019
By Kortney Scroger
Naomi Myers is a vibrant 5-year-old girl who loves glitter, mermaids and dancing.
She also loves her friends at Mary Bridge Children’s Hospital — a place she’s known since she was less than a day old.
“When she was born she was crying, but no sound was coming out,” says Naomi’s dad, Chad Myers. “That’s when we knew something was not right.”
Naomi was diagnosed with a congenital laryngeal web, which means she has extra tissue connecting her vocal chords. It affects her voice and her ability to breathe.
At 5 days old, Naomi had her first surgery to separate the tissue. That’s when she met Mark Boseley, MD. Dr. Boseley has been working with Naomi and her family ever since.
Dr. Boseley is part of Mary Bridge Children’s Ear, Nose and Throat (ENT) clinic, helping thousands of patients each year. He was recently recognized as the 2019 Physician Hero at Mary Bridge Children’s annual Bridge Builders Luncheon.
“Naomi has been through many complex surgeries as we continue to try to improve her voice,” Dr. Boseley says. “She was especially brave during the last few months when she had to have a temporary tracheostomy to help her breathe.”
This particular surgery required a little extra care from her team at Mary Bridge Children’s to help lift her spirits.
“The trach was the hardest hurdle for her,” says Naomi’s mom, Kristin Wright. “We really tapped into all of the resources that Mary Bridge offers, like speech and Child Life. They made a huge difference.”
Child Life Services is a donor-funded program that helps ease stress and anxiety for children during hospital and clinic visits. For Naomi, they prepared her for surgery using a doll with a tracheostomy tube named Sparkles. Kelsey Mitchell, one of Naomi’s Child Life Specialists, encouraged Naomi to ask questions about Sparkles’ “trach” and play through some of her fears.
“Kelsey took time to focus on Naomi, to ease her anxiety through play,” her father says. “For a kid her age, that was a big deal.”
Although Naomi’s journey has been tough, her mom says “She’s never lost her joy.” She’s also made lots of fond memories with her care team.
“Right before Naomi’s tracheostomy removal surgery, she was very nervous,” Mitchell says. “We’d been watching the ‘Frozen 2’ trailer on repeat while waiting and the operating room nurse put it on all the big monitors. The trailer is kind of intense, so Dr. Boseley pretended like he was scared. Naomi held his hand to help him feel brave while she went to sleep. In turn, it helped her stay calm during a potentially scary time. It was so sweet.”
From dance parties to half-birthday celebrations, Mary Bridge Children’s holds a special place in the hearts of Naomi and her family.
“Mary Bridge is a positive place for Naomi, even after everything she’s gone through,” says her mom. “She can’t wait to go back and visit. For her to still have a good relationship and see her nurses and doctors as a safe space, that says a lot about the people and the care.”
Today, Naomi is trach-free and will be on her way to kindergarten next year. She even aspires to be a trapeze artist one day.
She still has check-ups twice a year with her “nurse friends” at Mary Bridge Children’s and the future of her condition is not certain, but she’s a happy and healthy kid.
If there’s one thing we can all learn from Naomi, it’s to approach every challenge with a smile — and with lots and lots of glitter.
“She’s resilient,” says her father. “Every step of the process, you expect her and her body to respond a certain way and she doesn’t because she’s constantly exceeding expectations. That is her strong personality and determination.”
Her mom adds, “She’s brave — she shows up for everything and even when she is scared, she encourages me to be brave. She’s one tough cookie.”
To support compassionate care for children and families at Mary Bridge Children’s Hospital, consider making a donation to the Mary Bridge Children's Foundation.