(These Links Will Open In New Browser Windows)

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


THE FIRST IN A SERIES OF HAND SURGERIES: BEGINNING TO GIVE ANDREW FINGERS
AND TUBES TO HELP HIS EARS HEAL AND HEAR

MAY 2000

Apert Syndrome
The Hand Surgeries:
First Includes Tubes in His Ears

BY HIS PAPA

By the time we got into the year 2000, "y2k" meant the calendar for the year was to be filled with a litany of surgeries for Andrew.

Although none of this year's operations were to be of the critical magnitude of the skull reconstruction of the year before, we needed to pursue these operations to:

  • Give Andrew hope for more dexterity in his hands, perhaps even five fingers on each; and
  • Improve his hearing, and in the course, reduce his risk of chronic ear infections.

May day for surgeries dawned with separating the index and pinky fingers from the morass of joined tissue. Dr. Bentz, a new hand specialist who had relocated from Pennsylvania was, like Dr. Hardy before him, both technically quite skilled and outstanding in his demeanor with both parents and their child patient.

To limit Andrew's exposure to anesthesia, Dr. Heatley would step in during a breather in the three-hour hand procedure to insert tubes in both of Andrew's ears.

With Apert Syndrome, it is not uncommon for the drainage canals in the inner ear to lay nearly horizontal, thereby preventing fluid and infection from draining out of it. No wonder Andrew had nonstop ear infections during his first year and why he had been failing his hearing tests.

Both procedures went as scheduled and Andrew spent one day and one night in the hospital before being sent home for us to attend to his significant brace and bandaging Ñ a wrap from the tip of his new fingers, encompassing his entire hand, up the wrist and around the arm and secured at his left shoulder. He also displayed an incision across his abdomen where skin was removed to graft onto what would be the inner surfaces of his newly separated outer fingers.

Weeks to follow would include a trips back to the clinic, both scheduled and unscheduled, to replace the wrappings which could (and did) fall off on at last one occasion.

By week three following the surgery date, Ma and Pa would inherit the duty of removing the now-shorter wrap around the hand and wrist each day, cleansing and medicating the affected fingers, and then rewrapping and taping it all.

A new skill set to add to our resume, one which would be refined over the course of subsequent surgeries.

 

 

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)

1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 - Gallery 1 | 2