& 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
the first two years of Andrew's young life, he endured several surgeries,
as described earlier. He still needs his thumbs straightened, but
we need to wait a bit for them to get bigger. After that, he will
need at some point two major operations: when his
eyes bug out from an ungrowing mid-face, and dental surgeries when
some serious teeth take up residence in his mouth.
But, for 2001, he's enjoyed several months without any surgeries.
No sitting in Papa's lap each night before bedtime to have his fingers
cleansed, lubricated and rewrapped. No bandaged stub serving as
The break makes the frequent trip to the doctor for
more routine maintenance less of a burden. With his flat, rather
than angled, inner ear canals hanging on to every ear infection,
such trips are still rather frequent. We've lessened the mucous
buildup by relying mostly on rice milk to supplant cow's milk, so
he gets some time to help his body forget about antibiotics. Andrew
got mighty close to becoming immune to their effect, given the frequency
of his exposure to such medication.
Compared to many Apert children I've read about on the Web, Andrew's
case thus far is relatively mild. But it's still a far cry from
a normal childhood. I still strongly suspect that his cranky or,
alternately whiny, disposition somehow traces back to the trauma
of his first impressions of life on this earth: pulled quickly from
the birth canal into a series of tests with tubes and hoses thrust
in his mouth and nasal pathways. Nothing like the gentle cradling
that his big sister got nine years earlier. (I still fondly recall
rocking the newborn Christina in my arms and gently singing "Save
Your Heart For Me" to her...all the while my heart is unequivocally melting.)
Fortunately, Andrew has learned to laugh and even smile more often
... even without the presence and prompting of Christina to invoke
He even has a vocabulary of about 20 words, although noun-verb
pairings are rare, and few words are fully formed. It seems as though
Andrew doesn't always hear the ending consonant sounds of words.
And he's in no hurry to use a toilet yet.
But, he's come a long ways in many respects, and the outlook is
certainly far more full of hope than could be readily detected on
that dark night in March of 1999.
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