Eight months ago, the words, "It's a girl!" were followed by tears of joy from Alissa Schultz. "I heard her cry, and I cried, feeling so blessed with another baby girl. Then the room was quiet and the nurses were looking concerned," said Alissa. "My husband wasn't snapping pictures. It was one of the darkest moments I have ever experienced. Most noticeable was the fact that the baby was born without ears."

Eight months ago, the words, "It's a girl!" were followed by tears of joy from Alissa Schultz. "I heard her cry, and I cried, feeling so blessed with another baby girl. Then the room was quiet and the nurses were looking concerned," said Alissa. "My husband wasn't snapping pictures. It was one of the darkest moments I have ever experienced. Most noticeable was the fact that the baby was born without ears."

The couple later discovered their newborn daughter, Ellia, had been born with Treacher Collins Syndrome (TCS). Alissa did her initial research about TCS from her hospital bed on a borrowed laptop while Ellia was in the Neonatal Intensive Care Unit (NICU). "I spent that time learning about a syndrome that I never heard of, and trying to figure out how I was going to live my life and care for this baby," she said.

What Alissa learned was that TCS is a rare genetic disorder characterized by craniofacial deformities. Typical physical features include downward slanting eyes, a small lower jaw, and malformed or absent ears.

After eight weeks in NICU, Ellia came home with a tracheostomy, a hearing aid and a feeding tube. The tracheostomy was required partially because of the underdevelopment of the facial bones and a bony plate that had formed inside Ellia's nasal passages, preventing her from breathing normally. Last month, Ellia completed reconstructive jaw surgery, allowing her to swallow and begin to eat by mouth. Surgery on her nasal passages is slated for this spring.

Ellia's bone conduction hearing aid is worn on a headband -- utilizing her developed inner ear -- and will be implanted in her skull when she is 4 or 5 years old. "She can hear perfectly," said her mother, who added, "The biggest blessing in all of this is that she is not impaired cognitively. She's not fragile -- she's playful and getting ready to crawl. She will grow and develop but will face many surgeries."

How does this affect the Schultz family? "Our whole life has changed," Alissa said, "but we make time for everyone." Ellia's siblings have taken it all in stride. "I explained to my 5-year-old before she saw her new sister that Ellia didn't have ears," said Alissa. "When she met Ellia she told me, 'Mommy, she's beautiful. She has curly ears.' My 2-year-old will hear Ellia cough and say, 'I think she needs suctioned'. They'll learn about compassion firsthand; they know no different."

Compassion is important, said Alissa. "Beauty is more than meets the eye. When you see a child that looks or acts a little different, don't be quick to judge. I've learned it's better to approach the mom than to avoid them. I'm more comfortable now when someone does," she said.

So what if you'd like to approach but aren't sure what to say or do?

"Just say, 'Is this your baby?' and ask me questions. I want to talk about my baby just like everyone else. All mothers want validation and support," Alissa said. "I don't want another mom to go through what I did."

Alissa is developing a Web site that will have information on TCS in one place and provide support and assistance for families that need it.

And what does the Schultz family need? "Just to be the family that we are," Alissa answered. "It comes with a lot of people being curious and looking at us. Before, I was introverted, but I'm part of this world, and I want to work on education and acceptance of all differences. I have been transformed by the miracle that she is, the blessing that she is," she said.


Marguerite Marsh is a freelance writer in Columbus. She writes about many topics, including families, relationships, artists and pets.