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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 ... A RUGGED JOURNEY FOR YET ANOTHER

APRIL 1999

Apert's Syndrome
Early Diagnosis and Treatment:
Andrew's Saga at Home

BY JOHN MICKELSON

By the time we left the hospital a few days later, Andrew's head began to look less elongated and, at least, he had no trouble feeding. Many Apert babies, we had heard, could neither breast or bottle feed easily, if at all, because of cleft palette deformities. Andrew's palette was pretty normal.

His sleeping patterns were frequent, but erratic, and generally brief. He had a voracious appetite, and continues to, something considered quite consistent with his Dad's side of the family.

During the first few weeks at home, visits from County health nurses were common, as were trips into town to our family physician. Andrew was his first-ever Apert kid.

We then began a litany of visits to specialists. The first was to a neurological specialist at our provider's downtown clinic. His primary concern was to determine whether Andrew needed immediate attention, due to pressures on the brain from the fused skull plates (i.e., craniosynostosis). No evidence of abnormal pressures at this point, he assured us. In 23 years of practice, this specialist reported Andrew as only the fourth patient he had seen with Apert Syndrome.

Still, planning for forthcoming surgical care was in order, as Andrew would need to have his fused skull plates fixed during his first year of life, lest permanent brain damage result. What we had been reading about mental retardation with Apert's was less a consequence of the syndrome and more a historical inability to diagnose and treat it in time. If the brain has no room to grow due to fused skull plates, only then does retardation become a primary consequence.

We were then referred to the UW Clinics to see begin Andrew's journey with Doctors Gunnars Iskandar and Stephen Hardy. The former a neurosurgeon and the latter a reconstructive specialist, the two worked in tandem to remedy and rebuild craniofacial abnormalities. Until their relatively recent presence in Madison, area patients needing this skillset would have to go to Chicago or Dallas for surgeries. We were fortunate in this respect, as we could now obtain these special skills locally.

The surgeons would plan to rebuild the front and temporal area of Andrew's skull. As the profile in the photo at the top of this page shows, our son's forehead protudes discernably over his eyes, sloping sharply inward about this eyebrow region, and pointing toward the recessed mid-face plate that houses Andrew's eye sockets.

These surgeons hoped to be able to attend to this anomaly as well as reshape the skull at the forehead and free up the fused seams along both temples. This surgery would be scheduled for August.

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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