Henry has a new face. More precisely he has the face he should have been born with had it not been for a genetic misfire in utero. It is a connected face now rather than "cleft" and the first view of this was a surprise when we joined him in the post op room after surgery on Monday. This round of surgery seemed even to affect the general shape of his head, which seems for the first time gloriously symmetrical.
From the very beginning, even as we had carefully stared at those first photos from his orphanage in western China, we accepted the idea that some of Henry's issues might not be correctable and others would be hidden. It's interesting how perfectly natural this acceptance became in person, as we learned how Henry's physical challenges were inextricably part of his remarkable character, as well as part of what made him so special as one of our children.
But Monday, as we gazed at his newly heart-shaped face with its new button nose and centered mouth, albeit stitched, bruised, and swollen, we started to think realistically, maybe for the first time, about Henry eventually appearing pretty much just as a regular kid--and how astonishing this is, considering where this all started and everything it took to get to this point.
Because two other attempts just to close the gap across Henry's lip had failed, this round started from scratch, dissecting muscle and skin across the entire middle of his face to be stretched to an intricate connection of sutures at a central point below the nose. One of the most difficult tasks in this was constructing at least the beginning of the lower portion of a nasal septum which is called a columella and this will help determine the eventual shape and height of Henry's nose, which was flat and unconnected by muscle at its wings. The length of the columella in this round needed to be set just right in order to avoid a narrowing of his upper lip as he grows. Similarly difficult was the construction of at least a properly located if not ordinary looking cupid's bow, which is the double curve of the upper lip--also important to set just right for proportional growth later on. Our surgical team finished very happy with the day's work.
This was all preliminary stuff and further adjustments will be needed to the lip and nose in a few years, but the surgeons said that overall this round went better than they had hoped. We are all hoping the result will be good enough to avoid having to later do an extremely uncomfortable skin graft procedure called an Abbe flap that is sometimes used for Henry's particular condition. In this procedure, the surgeon takes tissue from the skin between the patient's lower lip and chin, and transfers it to the upper lip under the nose. The tissue remains connected to the donor site for up to several weeks so that the graft "takes" at the site where it has been placed. In other words the patient's lips are stitched together during this time. Hence it's not something to attempt before a child is old enough to clearly understand what's going on.
At any rate, this round went better than we, his parents, had hoped as well.
For now, however, all those sutures could still dehisce and we are being very careful, especially wary that pain medication can make Henry unpredictably wobbly. We are scheduled to return to the hospital next Monday to have the hard sutures removed to avoid scarring. This means that if we get through the weekend without them coming apart the reconnected tissue should be healed well enough by Monday to hold with just the dissolvable sutures underneath. We've placed extra fasteners on Henry's arm mitts and have ordered some better ones called Snuggle Wraps.
The wraps will need to stay on well past Monday to keep Henry from pulling out the long stents embedded in both his new nasal cavities and that are connected to interior sutures. These will need to stay in for up to a month in order to create a rounded shape for his nostrils. A repair of Henry’s dislodged ear tube was postponed as part of this round due to a scheduling problem, but we’ve rescheduled that to be combined with next Monday's suture removal.
If we’re lucky the worst may be behind us. We just need to somehow glide safely through the rest of the week.