& the Enigma of Chromosome No.10
Born With Apert's
His Big Sister
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Craniofacial Surgery: Tennessee
Craniofacial Center Erlanger
Erlanger on Apert:
Nat'l Org. for Rare Disorders:
& Related Conditions
Craniofacial Work at Columbia:
Apert Syndrome: Faces-Cranio
Clinical Variability in Patients:
A CONGENITAL DEFECT FOR ONE IN 200,000
... BECOME SOLDIERS WHO ARE ONE IN A MILLION
BY JOHN MICKELSON
On March 19,
1999, nine years after the birth of our first and only child, we
became the parents of Andrew John. It was an extremely painful delivery,
as a large head just wouldn't budge in the birth canal. With much
prodding and supportive coaching from the family doctor, a couple
of support birthing staff and me, my wife Sherri finally delivered
As Sherri asked if the baby was okay at 41, she was concerned
about the possibility of Down's Syndrome but the medical
staff at hand looked uncomfortable, seriously distracted and reticent
to say much.
After Sherri's delivering physician issued a brief "No,
he doesn't have Down's," Andrew was rushed off into an adjacent
room. While a specialist prodded Andrew's nasal passages and throat
with tubes, Sherri began an hour-or-so stint of being stitched up,
as she had torn clear to the rectum. Andrew's head didn't give in
the birth canal, we soon found, because it couldn't.
In all, I noticed what had the doctors a bit alarmed:
- Fused fingers on both hands, although the thumb on each hand
- Webbed and canted toes.
- A larger-than-normal skull; later we would find that the frontal
plates of his skull were fused and his softspot began at the center
and base of his forehead.
For the first night, Andrew even looked a bit like a conehead from
the ordeal. His head seemed to be two-thirds from the eyes up and
only one-third from the eyes to the chin. His mid-face plate, the
area between his eyebrows and nose, was receded and tipped back,
so that Andrew eye's would look upwards more easily than down.
The following morning, a genetics specialist from the Weisman Center
came in to examine Andrew. He quickly recognized what we had previously
never head of: our newborn Andrew had ...
Apert Syndrome what
APERT SYNDROME STORIES/SUPPORT
Teeter's Page. Major
site for Apert links and family-managed Apert
Apert Chat. Supplement
to the Apert ListServ. An Excite community.
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
of ListServ postings on Apert Syndrome.
of Matthew Romero, in conjunction with Children's Hospital of
Thrive Online: A
med library article on Apert Syndrome.
OTHER RESOURCES (These
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Swedish Apert Syndrome Informat
Medical College of Wisconsin:
on Apert Syndrome
Formation and Eruption in Patients