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news News Tuesday, September 15, 2020 Tuesday, September 15, 2020 9:59 AM - Tuesday, September 15, 2020 9:59 AM

Jennifer's story

Born with an incredibly rare congenital defect, Jennifer is one in a million

Jennifer's story

At 20 years old, Jennifer is a confident and social young woman who hails from Honduras. She has been a patient at Shriners Hospitals for Children — Boston for three years, and is an active member of Team Brave, our community reintegration program in partnership with the Boston Firefighters Burn Foundation.

Jennifer is truly one in a million. She was born with an incredibly rare medical condition of which there are less than 100 reported cases in literature worldwide – ahrinia, or congenital absence of the nose. Jennifer was born with two small indentations where her nose should be, but they are not holes. Unlike some other babies born with ahrinia, Jennifer thrived in spite of her condition, and was 17 years old by the time she even considered having surgery.

“At the beginning, I did not want to have surgery. I had no self-esteem issues and believed I was okay with just being myself,” she said. “After a while, I figured I would give it a chance, because why not? I didn’t know what to expect at the time but I am so glad I decided to do it.”

Before coming to Boston for comprehensive testing, Jennifer underwent an initial evaluation at a Shriners Hospitals-affiliated foundation in her home country of Honduras in 2017. Since then, she has stayed at the Boston Shriners Hospital on three separate occasions under the care of Eric C. Liao, M.D., Ph.D., co-director of the Cleft and Craniofacial Center.

In order to begin reconstructing Jennifer’s nose, Dr. Liao implanted a tissue expander in her forehead. When the new tissue formed a few months later, he brought the forehead flap down and used a piece of rib to create and frame her nose. While necessary, this part of the treatment was the most difficult for Jennifer, and she found herself second guessing her decision.

“I had this clunky head equipment that had to get tightened, and I had a giant ball on my forehead which was really uncomfortable,” she said. “Then when I had the expander taken out, I just had tissue dangling from my forehead and it looked so weird. I kept saying to myself, 'What have I done?'” Looking back on this experience, Jennifer laughed and said, “I had no idea it would turn out looking this good!”

Jennifer’s care is made possible through the Boston Shriners Hospital’s robust, world-class research network that allows providers like Dr. Liao to treat extremely rare conditions and also study them in real time. “We are one of the few medical centers where we can seamlessly go from caring for the patient and collecting cells to analyzing them in the lab,” Dr. Liao said. “And because we treat rare conditions like ahrinia, the world’s best are also here. They are part of our team.”

Jennifer still has one more surgery to go, during which Dr. Liao will tweak her nose and construct her nostrils so she may breathe through them. However, she is already more than pleased with the results from her surgeries and with all the care she has received at the Boston Shriners Hospital. “Everyone who has come into my life here and been involved with my treatment has made such effort to build relationships with me so I feel comfortable with them,” she said. “And that is special.”

Jennifer before care