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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:

Apert Syndrome: Faces-Cranio Disorders

Clinical Variability in Patients:



Apert Syndrome
A Last-Minute Decision Makes Day One More Frightening Than We Expected


As we awoke to take Andrew to yet another surgery on this brisk February morning, it seemed in many ways like just another in a long series of operations.

Andrew was once again recovering from a cold, something that usually follows him all but two or so months of every year (and those months are never winter ones).

This operation was a final facial operation to bring more balance into the lower forehead and behind-the-eyebrows region. Also it would "deliver" more of Andrew's recessed nose into place. Lastly, it would remove a straw bone fragment that stuck out near his left temple, a remnant from his last surgery.

"It's up to you whether to go ahead or reschedule. "
Drs. Mount and Iskandar would be working this one together, as it involved removing bone from Andrew's thickened skull to help rebuild brow areas that had little or no skeletal support.

As we were in the First-Day prep area before surgery, Dr. Iskandar came by and mentioned some of the risks involved in this surgery.

"There's a greater risk of any infection he has spreading into his brain with this procedure," he warned. "If you think he has any active infection or virus, you might want to consider rescheduling the surgery," he said.

This was one of those situations that Sherri and I didn't exactly long for the exclusive call to make that decision. Andrew has cold-like symptoms throughout much of the year. Now he was at least abating those symptoms...but was it safe?

Then the phone rang at the nurse's desk. Somehow, sister in Minnesota had got her called forwarded to the right area in this gigantic hospital and found us. She was crying and concerned for Andrew.

Should we postpone this surgery, with all this uncertainty and "morbid" concern outpouring at the moment?

I paused. We prayed. I don't know what ultimately influenced the decision, but we told Iskdandar and the others on the surgical team present at the moment to proceed.

Then we waited. For eight hours. Much longer than expected.

Finally, at about 6 p.m. that night, Drs. Mount and Iskandar strolled into our waiting area. Smiling. Saying the procedure went as good as you could possibly imagine. They scheduled only Andrew for that day, and "decided to take extra time to make it as good as possible."




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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