Emily Baez remembers being in the delivery room when she noticed that something was different about her newborn daughter’s ear.
“You count toes, you count fingers, but you don’t think for a second to check any other body part… especially an ear,” she says.
Microtia is a rare birth defect in which the external ear is not completely developed. It affects about one in every 5,000-7,000 babies born annually. “When she was born, I didn’t know anything about it, I had never heard of microtia, so I started with social media first,” she says. This is when Emily became involved in The Ear Community online, searching hashtags and connecting with other affected families. “It actually helped make my grieving process a lot better.”
After struggling to identify a health care provider that accepted their insurance, Emily found Nemours Children’s and instantly knew she was in the right place to begin her family’s microtia journey. They were scheduled to meet with Pediatric Otolaryngologist, Dr. Cedric Pritchett, and were excited to finally have some answers about their daughter. Emily started telling Dr. Pritchett about her advocacy efforts and her involvement with The Ear Community, after which he suggested they speak to Dr. Leto Barone.
“He actually came into my room my first visit… literally 10 minutes after,” says Emily. She was blown away by his experience working with microtia, as well as his involvement in The Ear Community. “This is the route that I wanted to go on. Everything does happen for a reason… we were led here,” says Emily. “This is where I was destined to be!”
Emily explained that as a mother it can be hard coming to terms with her daughter’s difficult road ahead – everything from not being able to pierce her ears or buy her cute sunglasses. But her advice to other families is to redirect their feelings and let it become their strength. She strongly encourages other families to look for the support they need, whether it be through online resources or just connecting with other families in their community.
Today, Emily is grateful that she and Journey do not have to face these challenges alone. She has a wonderful and supportive husband, son, friends in The Ear Community, and Dr. Leto Barone and his team. Together, they will ensure that Journey grows into healthy girl that is confident enough to make her own decision on whether she endures ear reconstruction surgery once she is old enough. Emily, for her part, will be by her child’s side until then.
“You are going to be your kid’s strongest advocate. Nobody is going to fight for your child more than yourself.”
