Andrew's Third Year With Apert Syndrome

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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 ... BECOME SOLDIERS WHO ARE ONE IN A MILLION

NOVEMBER 2001

Apert's in the Third Year
A Hiatus from Skull and Hand Surgeries

BY HIS PAPA

Over 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 a hand.

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 it.

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.