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Craniofacial Surgery: Tennessee Craniofacial Center Erlanger Health System

Erlanger on Apert:
A PDF File

Nat'l Org. for Rare Disorders: Apert's & Related Conditions

Craniofacial Work at Columbia:
CPMCnet

Apert Syndrome: Faces-Cranio Disorders

Clinical Variability in Patients:
Neurosurgery.Org


A CONGENITAL DEFECT FOR ONE IN 200,000 ... BECOME SOLDIERS WHO ARE ONE IN A MILLION

JULY 1999

Apert's Syndrome
Early Diagnosis and Treatment:
Can Andrew Hear Anything?

BY JOHN MICKELSON

Big sister Christina walked in to our new sitting room with a balloon as Andrew slept. Accidentally, her handling of the balloon caused it to burst. Surely this would wake Andrew with a startle.

He didn't even wince, much less move or awaken.

We had suspected that Andrew might be hearing impaired, and now we must find out if he had hearing loss, nerve deafness or had Apert Syndrome misformed the tiny middle ear bones that help him hear?

His first test involved measuring echo response to sound waves sent into his ears as he calmly sucked on a bottle.

He failed this test, but it only prompted a more meaningful one. A "BAER" test — an acronym for which I no longer remember its meaning. But, ultimately, it is a brain stem-based audio test that measures nerve response to audio signals. Although there was some substandard low-frequency response from Andrew, he essentially passed this test. There was no nerve deafness.

His failure to respond to sounds around him to any significant extent suggested a developmental problem: but does that suggest improper or incomplete bone development in his inner ear, or something that will improve as he ages?

We must wait until he recovers fully from his upcoming skull-plate and mid-face plate surgery before we test once more. Perhaps then we'll know whether we'll all be learning sign language very soon.

APERT SYNDROME STORIES/SUPPORT

Apert Support Group at Harvard.

Andrea's Page. Personal account from Andrea Gartner, a college student with Apert Syndrome.

Amy's Page. Personal account from Amy Esler, a girl with Apert Syndrome.

Apert ListServ. An archive of ListServ postings on Apert Syndrome.

ApertInfo: Story of Matthew Romero, in conjunction with Children's Hospital of Boston.

OTHER RESOURCES (These Links Will Open In New Browser Windows)

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