NORWAY – It happened at 9:59 a.m. Friday.

Faith Anne Waterman was delivered as planned without any unexpected complications.

“It went better than we all predicted,” said William Storman, the baby’s grandfather.

Faith, the daughter of Scott and Melyca Waterman of Norway, has Congenital High Airway Obstruction Syndrome, or CHAOS.

It is an extremely rare disorder that has been diagnosed only in 16 other fetuses. Eleven of them died before or immediately after birth. Two were aborted, and three have survived.

A baby with the disorder can’t breathe on its own because the airway from its nose to its bronchi is blocked by a cyst, a growth of strange tissue or some other abnormality.

As a result, the baby’s lungs fill up with fluid that is normally expelled through the airway. As the lungs expand, they threaten to flatten the baby’s small diaphragm and crush its heart.

When the Watermans learned of their unborn child’s diagnosis in October, they immediately agreed to travel to the Children’s Hospital of Philadelphia to meet with a team of doctors who specialize in the disorder.

Despite the bleak statistics, the couple never considered abortion. They set up an appointment to meet with specialists, and Feb. 13 was set as the delivery date.

In Faith’s case, it is a cyst blocking her airway.

The original plan was to remove the cyst immediately after the cesarean section.

But doctors decided Friday that the surgery was too risky for the 5-pound, 6-ounce infant. Instead, they performed a planned tracheotomy, allowing the infant to breathe and eat through a feeding tube.

Storman said the doctors will meet later this week to make a plan for a follow-up procedure.

Melyca Waterman hadn’t yet been able to hold Faith, but she has held the baby’s fingers through a special incubator, Storman said.

The mother and child will likely remain in Philadelphia until late summer or early fall. Doctors prefer that they stay close as the baby grows into her abnormally large lungs and as her diaphragm returns to a normal shape.

Depending on the success of future operations, Faith eventually may be able to undergo a procedure to close the hole in her throat.

lchmelecki@sunjournal.com

Copy the Story Link