National Microtia and Atresia Awareness Day

Family of patient at Texas Children’s Hospital reflects on their son’s journey to raise awareness for National Microtia and Atresia Awareness Day

Juan’s family will never forget the day when Dr. Carol Liu, Director of the Microtia and Atresia Program at Texas Children’s Hospital and Associate Professor at Baylor College of Medicine, told them about the surgeries that would make a life-changing difference for their son.

“Our hope was restored,” recalled Juan’s father. “We knew that it would be a long but gratifying process — and that we should never give up.”

The diagnosis

When their son, Juan, was born in Pereira, Columbia, he was diagnosed with microtia and ear atresia. Microtia is a congenital deformity of the ear that occurs in approximately 1 in 10,000 births. Most often, different parts of the external ear — lobule type, concha type and small concha type — are malformed or underdeveloped. In rare cases, the ear is completely missing, a condition called anotia. Microtia can occur alongside other congenital abnormalities but is typically an isolated, independent deformity that is associated with a small or even absent ear canal (atresia).

“As parents, we felt anguished and frustrated about our son’s physical and emotional development prospects,” said Juan’s father. “Back in Colombia, we kept doing research about our son’s pathology. We visited several doctors who told us the only treatment available in our country was yearly follow-up visits, as well as a hearing aid to improve Juan’s hearing — no reconstructive surgery was available at the time. We found out that the surgery that our son needed was available in the US, however, and we remained hopeful about being able to get it one day.”

When he turned 10, Juan developed a complication called cholesteatoma, which presented with persistent symptoms such as bleeding, pain and infection. Finally, he was referred to Texas Children’s Hospital.

“Due to the complexity of his condition, Juan needed to be treated at a hospital that could provide advanced and specialized care,” said Juan’s father. “Ever since the moment we arrived at Texas Children’s, the treatment has been outstanding. I think this is the best place we could have ever found to get my son`s treatment. We will remain forever grateful to this wonderful institution.”

The treatment

Juan is now 13 years old. After three successful surgeries at Texas Children’s, his prospects are very bright.

“Juan is doing very well,” his father was happy to share. “He is now in the 7^th grade and his favorite hobby is playing soccer. I cannot describe the joy of seeing his constant improvement after coming to Texas Children’s, seeing him develop just like any other child his age…it’s such a blessing.”

Of course, dealing with microtia has not always been easy.

“I can’t deny the process has been a little draining,” admitted Juan’s father. “It’s not easy for a child to endure so many medical procedures, pain, surgeries and hospital visits. However, as parents, it’s been wonderful and reassuring to witness such positive life changes with such excellent results. I would absolutely recommend Texas Children’s, 100%. Our advice to other parents with children facing this diagnosis is to seek alternatives, spare no expense or resources to help your child and remain hopeful, bravely facing all the challenges that they might find in the way.”

November 9 is National Microtia and Atresia Awareness Day, and Juan’s family is sharing his story to help other families learn more about this condition. “I think a lot of people are unaware of microtia, especially its treatment,” said Juan’s father. “I hope the story of my son will inspire them.”

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The Microtia and Atresia Program at Texas Children’s Hospital has been caring for children with deformities of the inner and outer ear since 2008. In addition to best-in-class repair and reconstruction services, Texas Children’s multidisciplinary team of otolaryngologists (ENTs) and plastic surgeons work hand-in-hand with audiologists, therapists, social workers and care coordinators to provide patients and their families with personalized, comprehensive treatment plans.

“Our main focus at Texas Children’s Hospital is always on hearing and speech,” said Dr. Carol Liu. “That is our biggest concern when it comes to children with microtia. We want to provide adequate hearing augmentation, and we want to provide speech therapy to repair any deficits. It is so rewarding to see how much of a difference Texas Children’s can make for patients like Juan.”

Learn more about Texas Children’s renowned Microtia and Atresia Program.