Once More into the Breach

Now that things here are returning to normal after a second hurricane (this one called Ike) blew safely by the neighborhood, we’ve scheduled another lip surgery for Henry, this time a full reconstruction. Our surgical team thinks it would be better to skip another first stage lip adhesion surgery since that procedure has failed twice and might not hold a third time. One of Henry’s ear tubes has come undone and we’ll add this to the docket for this round as well.

A first stage adhesion is an initial procedure that fastens only skin, which is one reason why for Henry it keeps tearing open. The full reconstruction will dissect muscle around the lip and nose to also be connected under the skin. This will give the new lip and nasal area some natural functionality and allow for relatively even growth as the years go by. A full reconstruction is theoretically stronger but could still tear apart. We’ll just need to be very careful and Henry will get a brand new pair of those clunky arm mitts.

Henry’s new upper lip and its surrounding area will be stretched unusually tight, which could easily leave him with an under bite. But this round will be overseen by our team's senior member, known nationally for this kind of work. This surgery will be very broad in scope and will undo and correct much of the right-side healed remains of Henry’s first surgery in China, which we now know had been botched. We are glad there are charitable organizations like Smile Train and Operation Smile that organize medical teams to travel to undeveloped regions of the globe to perform reconstructive surgeries on children born with cleft conditions, including many children who have been orphaned or abandoned. But we’ve learned that occasionally doctors who participate in some charity teams do so with little expertise or little or no background in handling severe cleft cases, and that blanket promises to save lives with a single “45-minute operation” are, for most cases, hopeful exaggerations. It may be that for these children a dehisced or failed surgery is better than none; that it's simply worth the try. Then again there have been problems.

At any rate, this next surgery for Henry will be a complex set of procedures that should begin to determine how his face will ultimately appear to the world around him. We think we've chosen well with our doctors here, and once again must simply hope for best.

As is, Henry’s cleft face is normal to us and precious in a way, since it is so unusually expressive, especially when he smiles. But it is admittedly a very unusual face that garners stares and a variety of squeamish reactions in public settings. This was particularly so after his last surgery when his lip sutures tore open; the result for a while had the look of an open wound. Still, each weekday morning Henry goes to the large outdoor general morning meeting at our girls’ school, toddling about or fussily clinging like any other child his age. He accompanies us to stores, to restaurants, to parties. He basically goes everywhere, and everywhere his sisters are his ready defenders. Brows furrowed, they sometimes ask what’s wrong with people, especially other kids, who are afraid of Henry or uncomfortable around him. For Dorothy and Clara are certain that Henry is just right, even if they’re not quite certain that his cleft problems are just temporary.

But behind Henry’s unrepaired lip opening is today a remarkable new hard and soft palate that is healing well where there had been only a gaping hole prior to his surgery in August. The rest, his parents know, is doable. Unfortunately, each round, much like that last one, is also going to hurt, a lot.

Henry made two years old on September 10, which with friends we marked in warm celebration. He is a very special little child and we still can’t believe we were so lucky to have found him.

We’ll return to the hospital on October 13.