Looking Back at a Lot of Surgeries

What a year that 2018.  In November Henry underwent yet another surgery and this time to repair the damage from the failed p-flap (pharyngeal flap) procedure that came undone late last summer.  Afterward we returned to the hospital several times for his doctors to carefully look him over, and just last week they were finally able to declare the repair a success.

Looking back, last year alone Henry underwent five surgeries in a 12-month span.

That seems like a lot in middle adolescence. The much larger number of times since he was a small child that Henry has needed surgery with a hospital stay and significant recovery time just shows how really hard it can be to fix a severe bilateral cleft lip and palate.

The special multi-stage procedures (Abby flap and Midface Distraction Osteogenesis) he had were especially hard.  Each came with a level of danger and prolonged intensity that far exceeded his other more routine surgeries. On the other hand, every repetitive round of general anesthesia has been at least a little worrisome on its own, especially the times when Henry had difficulty re-establishing his breathing or when he woke to frightening feelings of nausea while his mouth and throat were swollen with painful sutures.

Of special note in Henry's case is that to date about 60 percent of his surgeries have failed to some degree due to dehiscence or, in other words, due to sutures unraveling or stitched tissue tearing away.  It is entirely possible that surgical error could be a cause, although over time his surgeries have been performed by many different surgeons in three separate hospital settings. The condition of the tissue that his surgeons are working with may be another factor, since most of the areas addressed were at least partially homemade during previous surgeries.  And, from the beginning, the severity of this particular cleft has clearly been a challenge.

The good news is that we have reached a stage at which over the next couple of years our medical team will likely shift focus toward constructing a row of upper teeth, which will mostly involve orthodontia and maybe some lighter-grade oral surgery.  Meanwhile, we feel we can talk freely with our cranial-facial and plastic surgeons and are reasonably confident in their comparative expertise going forward.  However, our experiences over the past couple of years have made us less attached to the status quo.

It is hard to say how all this has really affected Henry.  He seems to accept hospitals and surgeries as things that for him are normal, although he understands that most other children have not had the same experiences. More often these days he prefers staying home to venturing out to new places.  On the other hand, he is very comfortable in familiar, favorite settings that can be crowded with strangers such as the zoo or the aquarium. He attends 6th grade at an urban public middle school that shares a building and busy campus with a high school (attended by his two sisters).  He still wakes up happy each day.

While all this can be a lot to handle, Henry handles it well and mostly through his natural tendency to happily live in the moment.