Henry: Midface Distraction Osteogenesis

Thursday, November 16, 2017

Midface Distraction Osteogenesis

It's been a while since our last post since thankfully it's been a full year since Henry's last significant medical procedure. We have another big combined set of procedures coming up and it involves something called midface distraction osteogenesis with the use of rigid external distraction.

Example RED device

The combined results of Henry's earlier reconstructive surgeries overall have been good, but as he grows his midface region is compacting inward in relation to his lower jaw. So on Monday a surgical team will make some cuts to the bone across and on each side of the upper maxilar portion of his face, and then attach something called a rigid external distraction (RED) device to his skull. The initial surgery will require about 3 days in the hospital after which the device will need to stay on for roughly 30 to 90 days. We will need to adjust the device each day to slowly extend the middle portion of his face outward. All this would appear to have a degree of difficulty similar to the Abbe flap procedure that Henry endured two summers ago. His doctors have discussed the fine details of what's ahead with Henry. He is 11 now and in 5th grade. He says he's ready, and we can tell that he is mentally preparing himself. As with the Abbe flap we found a number of articles in medical journals that described midface distraction procedures and the varying techniques used to perform them. But the articles were intended for surgeons. We could find little information intended to prepare parents or patients with what to expect. So we'll post again as things progress to provide some of this practical information here.

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How This All Began

It was a typically dusty afternoon on September 11, 2006 in a dry, hardscrabble, terraced plateau region of Gansu Province in northwest China. There in Jingchuan County south of the city of Pingliang, a driver named Tian Wu Ping had just dropped off a fare at a roadside hotel called the Tian Yuan Guest House when something caught his eye on the east side of the crossroad and next to a refuse bin.

It looked at first like a bundle of rags but turned out to be an infant wrapped in an old cotton quilt, a small baby boy who appeared to be newborn. Tian picked up the child and called the local police. The baby had been abandoned. He was missing part of his face below his nose. Born with a serious cleft anomaly, he had no bone structure between the upper bridge of his nose and his lower jaw, and no separation between his oral and nasal/sinus cavities.

Moreover, the child had been left by the roadside without the usual effects. No red cloth note indicating a birth date. No bottle, cup, or packet of formula. No infant clothes. The police drove him north to Pingliang and turned him over to the prefecture Civil Affairs Bureau, which placed him with the Pingliang City Social Welfare Institute. The staff at this orphanage named him Liang Xiao (Small) Wei (Big).

On admittance, a doctor noted that Xiao Wei was indeed just a day or two old and underweight at 5 lbs. Then this frail little child took his place among about 80 other children then at the orphanage. Another exam at five months showed that despite the issues that can accompany his condition, Xiao Wei was small but growing. So the orphanage staff posed him for a few photos and prepared a dossier of paperwork to send off to Beijing, to the China Center for Adoption Affairs (CCAA), for his case to be accepted into the CCAA’s waiting child program.

China's waiting child program seeks to find homes internationally for orphaned or abandoned children with special needs that might otherwise make finding a family highly unlikely. These can include treatable medical issues such as congenital heart disease, Hepatitis B, cleft issues, or spina bifuda. Some waiting children have more severe issues.

Not all abandoned children with special needs become waiting children. Not all waiting children find homes.