NORWAY – Melyca Waterman always knows when her daughter is hungry or has gas. Like most babies, Faith Ann gets fussy.

She kicks her legs, stretches her arms, and her lips start to quiver.

She looks as if she is going to cry. But, other than a small gurgling sound coming from a small hole in the middle of her throat, she doesn’t make any noise.

Soon to be six months old, Faith Ann doesn’t wake up screaming in the middle of the night. She doesn’t whimper when her diaper is wet. She doesn’t yelp uncontrollably when she wants to be held.

People have said to Waterman and her husband, Scott, “It must be nice having a baby that is so quiet.”

The couple know most people simply don’t understand. The Watermans would do anything to hear their baby cry.

Faith Ann was born on Feb. 13 with a rare disorder called congenital high airway obstruction, or CHAOS. A webbing of extra tissue is blocking her bronchial tubes, making it impossible for her to breathe on her own.

Only 16 other fetuses have been diagnosed worldwide with the disorder. Faith Ann is the fourth to survive.

Hardest part’

On the day of her delivery, a team of specialists at the Children’s Hospital of Philadelphia pulled half of the infant’s body out of the womb and performed a tracheotomy, cutting a hole in her throat and inserting a plastic tube.

Melyca Waterman was unconscious at the time. It was two days before she was strong enough to make the trip to other wing in the hospital to see her daughter.

“That was the hardest part,” she said, sitting in her living room in Norway as Faith Ann slept in her arms. “I couldn’t wait to see her.”

Their introduction was bittersweet. Faith Ann was more beautiful than Waterman had ever imagined. She had rosy cheeks and big blue eyes.

But Waterman, 23, didn’t feel like a mother. She was afraid that Faith Ann didn’t know who she was.

“Seeing her was surreal,” Waterman said. “I was worried that she had bonded with the nurses, not me.”

Bonding

Twelve days later, the Watermans were able to hold Faith Ann for the first time. For the next three months, they spent nearly every day at the hospital by her side.

They learned to give her Melyca Waterman’s breast milk through a feeding tube in her nose, and the nurses taught them how to suction out and change her breathing tubes.

“At first, it was really hard to see the hole in her throat,” Waterman said. “Now, it’s like changing a diaper.”

Whenever the Watermans leave the house with their daughter, they take along two big bags and a kit that looks like a tackle box. One of the bags is for her diapers.

The other is for the heavy suctioning machine used to clean mucous from her breathing tubes. The kit carries extra tubes, sterile water and an air bag in case the tubes cannot be cleaned and they have to be changed in an emergency.

“People always say, I don’t know how you do it. I don’t think I could do all of that,'” Waterman said. “I tell them, You just don’t know you can until you’re in the situation.'”

Sign language

During Melyca Waterman’s pregnancy, several people, including the doctors who treated her, encouraged her and her husband to carefully consider her options carefully.

Despite the bleak statistics, the couple never talked about an abortion. When they saw Faith Ann smile for the first time and they heard the change in her breathing as she laughed, they knew they had done the right thing.

“Look at her,” Waterman said. “I couldn’t ask for anything better. She’s like a perfect human being.”

Faith Ann no longer needs her feeding tube. After months of practice, the Watermans have taught her to drink from a bottle.

Doctors will examine Faith Ann at 18 months to determine if she is ready to have the blockage removed. If all goes well, they will do the operation, then begin the series of reconstructive surgeries to close up the hole in her throat.

In the meantime, her parents are teaching her sign language. They’ve started with eat, hungry, walk and play.

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