The Shape of Things to Come

We've settled into Henry's adjustment at home and have begun our medical visits. The adjustment is going well. From our doctors we've picked up some clues to what's next, a few details of which we offer here in appreciation of what so many other families have also chosen to go through by adopting children with cleft issues or other special needs--or often just by making the unusual commitment that is international adoption generally.

Our first medical visit last week focused on the basics. Henry got a once-over general exam by our pediatrician, who is familiar with internationally adopted children and head of the cleft team at the medical center we use here. Henry was pronounced developmentally delayed but generally healthy and, sure enough, has gained a pound or two in just the past three weeks.

Although his orphanage medical records contained some immunization info we've learned from experience with our girls that it's wise to redo all the standard vaccinations and to just get them over with all at once--rather than to prolong the pain of these shots over extra visits. The nurses who administered the shots were fast, but needles are no fun and Henry wasn't happy about any of them. He screamed through the whole procedure as well as the blood work later that was worse, but held no grudges. This week we met in sessions with our cleft team, which in addition to our supervising pediatrician includes three surgeons (oral/maxillofacial, plastic, and pediatric dental), a pediatric ENT specialist, a medical geneticist, a hearing specialist, a speech therapist, and a social worker.

In advance we were given a set of DVDs used for training surgeons in a variety of cleft reconstruction procedures. As expected, Henry will need more than one operation to redo the attempt to construct an upper lip tried in China and to close his cleft palate. It now appears that his lip reconstruction alone will require two surgeries in stages, perhaps 6-8 weeks apart. He'll need tubes for his ear canals presently holding fluid that is blocking his hearing; this could be combined with his first stage lip procedure. Additional work will be needed to construct some nasal passages and elevate his flattened nose, which could be combined with the second stage "full" lip procedure. [The clip attached to the above right image shows two of many nasal reconstruction incisions.] Palate surgery may need to wait until after his lip is complete, in reverse of the usual early treatment sequence used for infants.

Our first overall medical goal will be to close at least the rear portion of Henry's palate as quickly as possible since this is the area most important to speech development. This means we've a lot of work to do beforehand in the next several months. The wide width of his clefts, a late start, and tissue damage from the unsuccessful first surgical attempt will be challenges. The team will combine procedures where they can. We now know that each surgery will be a serious undertaking and it's obvious that we're about to help Henry through a series of very long bouts with terrible pain. We can't pretend to be prepared for this sort of thing, but we'll get through it. Milder dental work and orthodontia will follow. When Henry is about ten he'll need bone grafted from his hip into the gaps in his maxilla. Later in adolescence he may need adjustments to his jaw or nose, or treatments for scarring. The huge rewards in all this are obvious for a child who began life with the odds so stacked against him and therein lay the huge rewards for us.

Three and a half weeks of nonstop eating has made Henry's lower abdomen bloat like a beach ball on his tiny frame but his cheeks, arms, and legs are already getting that pudgy baby look and feel. Eventually his growth will even out with help from the exercise he's getting from tottering back and forth down our long center hallway at home. He still has trouble sitting up or standing up on his own but once up, he's raring to go. His radical change in food intake last week produced an extraordinary number of "exploding" diapers overflowing with a very runny light-colored poop. The treatment was patience while his system adjusted and it has.

Orphanage environments can easily produce difficult behavioral or cognitive developmental issues in children and separately the transition into a family can have traumatic consequences lasting weeks, months, or longer. Not so for Henry, who really is 21.9 pounds of incredibly resilient good nature. By now we know it's not an act. His has by far been the quickest and easiest early transition of our three. Indeed he has quite conspicuously helped himself to ease into our family--clinging to each of us, copying our gestures, blowing us kisses. He cleverly obliges his sisters when they play with him like a soft toy. One night last week he fell asleep and giggled in a happy dream before we moved him to his crib, a good sign that things are going okay. So our attachment plan over the next several weeks is simply to pour enough cement on this status quo. We suspect we'll need a foundation as strongly cemented as possible for all the physical pain ahead. But we seem to be off to an unusually good start.