A CONGENITAL DEFECT FOR ONE IN 200,000 ... A
RUGGED JOURNEY FOR YET ANOTHER
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
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