It’s 3:45 am on Saturday, September 6th, and I am still confused about the time change. My laptop, which thinks it is still in Massachusetts, tells me it’s Friday afternoon on the 5th, and since this blog entry is about the 5th, we’ll just pretend I got it together and wrote it last night. In truth, Screening Day was such a zoo that I thought it was a miracle that I managed to Skype with Randy between his morning classes and brush my teeth before crashing.
Since I am in China, Screening Day began with Opening Ceremonies. The hotel is located downtown, and the hospital is a ten-minute walk past shops and a couple of small parks. Yesterday there was a group of about 20 men and women doing Tai Chi in a small plaza in front of a scooter parking lot. We were in a big hurry so I couldn’t stop for a photo, but I plan to sneak one in today. As an aside, electric scooters are the transport of choice here. They’re lovely in that they zip by nearly silently, unlike their gas driven cousins. But this very silence makes them a bit of a hazard. Pedestrians are definitely on their own here, and walking to the hospital yesterday, felt like we had disturbed a nest of silent hornets.
So, back to the Opening Ceremony. We arrived at the hospital to find a huge welcome banner had been stretched across the entrance. Of course it was in Mandarin so it might have said, “international team members GO HOME,” but there was a festive air so I think it was a welcoming message. There were young nurses lined up at each side wearing red ribbons with bright yellow printing across their bodies. Parents with their babies and toddlers had been herded out to form an audience and were already wilting in the hot sun. After about 15 minutes of fiddling with the audio equipment and getting all the volunteers and speakers in place, the show began.
Several dignitaries from the hospital and from Op Smile, China were on the steps along with ME, the designated Important Person from the international team. There were seven of us in all, and each of the other six came to the microphone, bowed to all directions and then read off long, loud speeches. I was next to last and had been instructed to give a short speech that included how grateful the international team was to be in Nanyang. With my interpreter, Zoe at my side, I spoke for 90 seconds and said “all the right things.” My speech was clearly the favorite, solely for its brevity. Poor Zoe was so nervous she was literally shaking. For her to be on the stage with these powerful people, TV cameras rolling, with her skills as an interpreter on view for all to see and to likely be judged by her employer was a huge deal. I, of course, was oblivious. It hadn't occurred to me that she would be in the spotlight as well. As the speeches dragged on, babies began to cry and their parents started slipping away with them, out of the hot sun. Finally the ceremony ended in front of a much leaner audience, and Screening Day could begin.
Screening Day is always hectic, but yesterday was one of the most stressful ones I have seen.
There is an order to the process with stations the child goes through, registration, history, which includes questions for data collection for ongoing research into causes of clefting, then vital signs. Next the child sees, in order, the surgeons, pediatricians and anesthesiologists together as we look at similar things, then dentist, speech therapist and lab. We were in a relatively small room, and the orderly process soon broke down. The last time I was in China, in Inner Mongolia for a mission, I noticed how much pushing and shoving to get to the front of the line there was at the airport. The program coordinator of the mission explained to me that there is still a mentality in China of needing to push to the front that is left over from the years when failing to do so meant you starved. There are programs now trying to reeducate the people on queuing and taking turns, but self-preservation skills are hard to reverse.
I think some of what went on yesterday was due to this mindset. It felt like the parents were worried that the screening time would run out and we would “shut the door” at some point and their child would not be able to have surgery. As soon as they were through with vital signs, parents were rushing around the room with their children, shoving their charts forward and trying to sit in the chair in front of any doctor they saw. No amount of explanation of the process or reassurance that we would see everyone served to calm them. Finally, the head of the hospital had to pull the authoritarian role and set up marked lines with student nurses monitoring and guiding parents, one by one. Many still slipped by and pushed ahead, but at least we were able to work. It was heart breaking and reminded me just how devastating facial deformities are and how desperate parents are to have their child “normalized."
This also came out in terms of “age deviations.” Op Smile International has fairly strict guidelines on age and weight for when a child can have the lip and palate surgeries. A child needs to be 6 months old for the lip and 12 months for the palate. If a child is healthy and heavy enough, and all the physicians and the mission coordinator agree, there can be some “age deviation,” i.e. a five month old lip or 10-11 month old palate. In the US, the surgeries are done younger, but Op Smile sets these guidelines because in many countries the babies are poorly nourished and the follow up will not be as close. Having the child a little older and bigger gives a better safety margin. Yesterday, we had many three and four month old infants come to screening. At first, the surgeons were telling them they were too young and that they needed to return at six months. Then one father became upset and said one of the local surgeons who was on the team had told him to come to screening. This surgeon had trained in France and felt comfortable treating younger patients.
After conferring, the surgeons decided they would do lip surgery on infants at 4 months if they weighed at least 6.5 kg. This meant the coordinators needed to go find the parents that had been told to go home and bring them back. It also meant filling out “age deviation” forms to send to Op Smile headquarters. They have the final say, so we had to do those last night and fax them before the surgical schedule could be completed. In the end, we put ten 4 month olds on the schedule. Medically, I’m comfortable with it. Each of these babies is healthy and chubby, and the follow up here is excellent. However, the whole process added significantly to the chaos. Once the four month olds were approved, this surgeon tried to get a three month old on the schedule. The anesthesiologist from Seattle and I both said absolutely not, and luckily, the surgical team leader who is Chinese also said no. The three month old was big, but physiologically, younger babies tolerate surgery less well. It’s more risky and there’s no reason the baby can’t wait another month or two.
We saw three children with syndromes that included severe developmental delay yesterday. None had cleft iip, just palates, and for each, the parents were hoping the surgery would help their speech development. For each of these children, the speech delay was from the poor brain development, and palate surgery would make no difference. In addition, having seen enough palate surgery now, I know how difficult the post-op period can be, especially for a child who can’t understand why they are in pain and are not allowed to eat. Explaining why the surgeons have “refused” to operate can be hard as the parents often feel the doctors don’t value their child. It’s more difficult when a cleft lip is involved as the appearance of the child is involved in the decision.
We finally finished screening having seen 96 patients and the schedule was being made up when a couple brought back their 2 year old who had been accepted for palate surgery for me to check his cough. He had been seen first thing in the morning and had started coughing late in the afternoon. When I listened, he was wheezing, and when I talked with them, it was clear this was a recurrent problem with exertion or colds. They said he got “bronchitis” a lot and wanted some antibiotics so he could have surgery. I tried, through another interpreter as Zoe had gone back to the hotel, to gently talk about wheezing without the loaded “asthma” word, but they became very upset that I wasn’t giving antibiotics. The surgical team leader came over and heard his wheezing and said it wasn’t safe for him to have surgery this week. The parents were devastated and stormed out, saying they would see a local doctor. The sad part is that if I could have convinced them to let met give him a medication for wheezing, he likely could have stayed on the surgical schedule, and perhaps started to get his asthma under control.
At the end of the day, most of us just wanted to get back to the hotel, shower and crash, However, there was a welcoming dinner, not mandatory but necessary to attend. It was given in a fancy hotel by the head of the hospital and local dignitaries. It involved mountains of food, multiple courses and rounds of toasts with wine, beer and sake. Those of us who don’t imbibe toasted with our sake glasses discreetly filled with water, smiling broadly and pretending tipsiness. There’s an art to toasting when the dignitary comes to your table. Your glass must be a fraction lower than his to show respect. The program coordinator told us it gets comical with two semi-equals each bending lower and lower until they are nearly on the floor toasting.
I ended up not being able to eat much because the dinner was of the style where multiple dishes are placed on a lazy Susan in the center and everybody uses their chopsticks to take what they want and put it on their plate. Three or four dishes had shrimp, so after awhile, all the dishes had been “contaminated” with sauce from the shrimp dishes. I didn’t really want to have an allergic reaction and risk treatment by a sake-soaked hero, so I drank my “sake” and nibbled on rice. We were all offered packs of very expensive cigarettes and fancy lighters as souvenirs. There are two 16 year old students on the trip who sponsor Op Smile clubs at their high schools. They are sweet wholesome boys and were trying their best to look cool as the waitresses tried to fill their sake and wine glasses and put cigarettes and lighters at their places. Their sponsor, a woman whose job it is to watch over them, deftly collected the contraband and showed them how to turn over their wine and sake glasses – “for future reference if you decide you don’t want wine or coffee or whatever.”
Finally, my roommate, Marilyn, the Filipino nurse, is not a big drinker, and was doing the water trick with her sake glass. She wanted a photo of the biggest big shot who had been introduced as the “Party Boss,” so she went over to the head table and asked if she could take his picture. He said of course, but only if she toasted with him. She tried to politely decline, do it with water, wine, but ultimately it became clear he would be insulted if she didn’t do a shot of Tequila with him. She came back to the table with numb lips and fell asleep in her clothes when we got back to the hotel.
Well, that’s it. Screening Day is over. We had to add a table to accommodate all the kids so they are flying in another anesthesiologist. Tomorrow surgery begins.
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