Monday, January 20, 2014

25, 26, and 27 March 1999, Operation Smile, Final Entry

25 March 1999

Last full day of surgery – could it be so? This week, the serious work we set out to do, is almost over. Tomorrow is a half-day of surgery, an afternoon of packing, and a farewell party with the hospital staff. So much took place here so quickly. It is odd and almost unsettling. I must now prepare to leave.

Today was an improvement on yesterday. Karlene was back, but not 100%. I assisted her in the playroom but got more time with the parents. I needed it. I found, probably too late in the game, the early morning visit to the ward helps to screen for panicking parents. I made contacts with the night and floor nurses. They are only too happy to let me know about families in need of some extra attention or guidance. I sit with them and talk for a bit and tell them to look for me when they are called to go downstairs. When they arrive in the playroom there will be a familiar face.

I love to wander through and see the changed faces. There are some profound differences. There are no serious complications, a credit to the team and John’s daily cautions toward safety. Every family is struck with wonder at the change in their child. We were warned in training not to call these transformations miraculous or perfect. It is hard to gauge people’s expectations. There will always be scars. There will always be some imperfection. The families I meet here are humble and grateful. Their resilience and fortitude continues to awe me. It’s nice to be on the front line here, the one who receives the verbal benefit of this collective work. I try to convey the gratitude I hear to the people working in surgery and recovery. I need to do it more.

This afternoon, after the crush of early patients, there was a lull in the schedule. The clinical coordinator, Raphael, and the student nurses wanted me to go look at surgery. The head nurse went into the storeroom and found the longest set of scrubs she could find. I’m at least six inches taller that the tallest of the Filipino nurses. They covered my head and found me a mask and told me to keep my hands up where they could see them and to let them know if I started to feel funny.

Me, Sheila, and Karlene

I entered. Owen, one of the Filipino surgeons, was about to repair a lip on Agatha, a fourteen-year-old girl I talked to in the playroom while she was waiting for a table to open up. I knew her mother, shy and a little confused by the language differences, was sitting with the other parents out in the hallway. She desperately wanted this surgery for her daughter but was frightened to be alone so far from her home. Agatha was polite and reserved, with long shiny black hair and downcast eyes. When she responded to my questions her voice rose just above a whisper and her hand shot up instinctively to hide the defect of her mouth. Even though she was smart and made good grades, she hated school and did not want to go because she was teased all the time. Her only friends were her cousins. No one else wanted to be seen with her. Now, here she was, prone and peaceful on a narrow raised bed, chin jutting boldly into the air, arms and legs loosely crossed.

Michael, the dentist, examined her mouth and quickly pulled out four badly decayed teeth. He told me our mission might hold a record for tooth extractions. He plunked Agatha’s teeth into a tall glass jar and moved on to the other surgery to inspect more mouths.

Veronica explained the anesthesiologist’s equipment and quietly went about her work. This was a different world. No repetitious translations, no anxiety or pre-surgical jitters, no tears or runny noses or thumbs being sucked. Here was a focused and hushed industriousness accentuated by bright overhead lights starkly illuminating the young girl’s flawed face.

There was a chill in the room, an actual air conditioner in one of the windows. One of the nurses pulled a light blanket over Agatha. They taped her eyelids closed and draped her face with deep blue cloths. They were covering all but the specific surgical field. All our attention was directed towards Agatha’s mouth, her precious bane. Veronica and an assistant went to work inserting an IV, administering more medication, and placing a tube down her throat.

I hesitated to watch. I wasn't sure if I would react emotionally or suddenly get lightheaded. Strange since I like to think of myself as controlled. I carried Trevor into many of his surgeries, summoning this purposeful calmness, knowing the steadiness of my grasp, the timbre of my voice, communicated peace or panic. In this setting I was the observer. I wanted to witness the crucible of this process, the turning point. I wavered, questioning my detachment.

At Veronica’s urging I peeked over Owen’s left shoulder, resolving to keep steady and not embarrass myself, ready to step back out of the way if I felt shaky.  His fingers were working rapidly, delicately slicing the skin around the inside of her cleft, matching the parted sides then carefully, quickly, stitching from the inside outward. The surgical nurse anticipated every move, suctioning and offering instruments and, at the same time, staying clear of the field, letting Agatha’s new lip emerge. I held my breath.

I stood for twenty minutes mesmerized by the process of taking apart and putting together. It was at once bloody and violent, exacting and elegant. Agatha was born with a cleft that effectively flattened the left side of her nose. After preparing the gap of the cleft for closure, Owen went inside of her nostril and, using tiny deft stitches, he puckered – almost quilted – a rounded bulb, closely matching the right side of Agatha’s nose.

 Three surgeries, one room.

I left Agatha and looked through the other operating room. Three tables working, three pools of light – all cleft cases, kids I worked with in the playroom an hour earlier. One of the anesthesiologists propped a He-man action figure doll on the knee of a little boy. Christian wouldn't let go of it when he was called into surgery and we let him keep it. Muscles bursting, sword raised, He-man kept vigil over the quiet precise workings of the operating field. 

26 March 1999

I should be packing. It is late. I am tired. I write.

The hospital staff hosted a party for us this evening, a band and food in an open pavilion out in the fields of a local mango plantation. We arrived too late to see what was around us but a sweet aroma hung in the air. All of the medical students and nursing students attended. The food was pork and vegetables and rice, again. I've learned the cheaper rice contains a greater percentage of pebbles. Nothing makes hunger go away faster than having your molar descend on something small and unbearably hard. I've lost weight.

The party was fun. Even the sisters got out and boogied on the dance floor. John and the other doctors let loose and were pulling everyone into the mix. I swear I’m going to take dance lessons. This happens to me every time I go to a wedding. My two left feet need training.

Sheila and Jennielyn and Romille, my translators and ambassadors, were there. Jennielyn went up to the microphone and blew the crowd away with her strong, clear voice. She sang some current pop tune all seemed to recognize but me. Everyone clapped and sang along. What a surprise she is.

Karlene, Me, Isabel, and some of the many nursing student volunteers.

There was a light surgical schedule this morning then we packed up or donated our remaining supplies and equipment. Karlene and I assembled a toy bag for Jessica, the little girl with Down’s syndrome, and her mom, Lady. They returned home this morning. I hope to send her some information and contacts if I can find any when I get back to the states.

I brought the rest of the toys over to Darcy in Physical Rehabilitation. Her department is the only one in the hospital with a contained playroom. She gave me a tour and introduction to everyone there. She was such a great help to me.  

I handed out the rest of my goodies. I will return home with a half-empty suitcase unless I manage to do some souvenir shopping. Tomorrow we travel to Manila. All the OpSmile teams from throughout the islands will converge for an evening celebration. Sunday, we disperse.

My last night in Cavite. I am used to the truck noises from the highway. The air is still tonight, no breeze to move the light curtains across the open doorway on the balcony. I can smell the garden. I am lonely for Josh and Trevor. After I get my bags in order, maybe I’ll take one last swim in the dark.

28 March 1999, Osaka to Detroit

I’m going home, six hours into a thirteen hour flight. My legs are asleep and I may never get them back. I stick them out into the aisle when the traffic dies down but there is no relief. I am driving the young couple next to me crazy with my restless fidgeting.

Robin Williams is on the movie screen doing some silent fantasy/tragedy thing, “What Dreams May Come,” I think it is called. I wonder if there should be a question mark after the name, as in being afraid to go to sleep. I am not afraid. Sleep is very welcome here. I wonder what dreams will come to me, with all my fresh adventures.

My new experience for today? Sushi. They served it for dinner with chopsticks and I went for it, rice and all. I liked it too, though I think I provided some entertainment for the Japanese people surrounding me on this flight.

Ahhh, back to confused hours, confused days. I do hope I get to sleep before I go back to work. Back to answering the phone, watching the market, the big black filing cabinets, the Hirschfield prints, and my day long view of the water cooler. Back to my kids. I love them more. Back to the dirty melting snow and roads with street signs and stoplights and aloof, angry SUV drivers. Back to permission slips and smoked turkey school lunches and orthodontist appointments.

I keep thinking about a portion of my training for this mission. We were all exhausted and wrung out from the constant activity and in-your-face intensity of preparing for an Op Smile surgical mission. Many of us were upset, raw from the touchy-feely probing of attitudes and histories with facial deformity. There were myriad stories of devastation, anguish at the way outsiders can be callous and unthinkingly cruel to people who look different. There were stories of lasting physical pain from continued surgeries, social isolation, and emotional desolation from living distinctly outside the mainstream ideal of physical perfection.

Will, our guru, the person who assembled our group, conceived, developed, and ran the training program, was giving us all a chance to decompress before we concluded our weekend together. We sat in a circle. He asked us all to respond in turn to this question: Given your experience with facial difference and its effect on your life, if you could live your life again would you deliberately choose to remove the experience of facial difference from your life?

This was a brutal question for me. I sat there, mind churning, thinking of all the growing forced upon me after the surprise arrival of a son, a child welcome but wholly different from my sheltered, comfortable experience.

The answers progressed toward me, parents recognizing the added challenges, affected adults finding value in their suffering. The turn came to Matt, a young adult severely affected with a deep, open cleft of the face. I worked with him several times over our three days. He reminded me very much of Trev, awkward and shy but eager to do the right thing. His defect made him difficult to understand and would serve to clearly place him outside any accepted norm. Yet he was earnest and affable and a sweetheart. Anyone would understand his hatred of circumstance and a fervent wish to be whole.

He took a while to start talking. His voice was soft and its effect was to make each one of us lean forward at attention. He chose to keep his facial difference. It was him. To take away his experience would take away too much of what he was. His life was difficult. He paused. People he met found it hard to look past his facial difference and see the person, the human being, behind it. Sometimes he wished it would go away so he wouldn't need to deal with it every time he went to the bank or the video store. But his defect enabled him to see others in a different, maybe deeper, way. This was the thing he didn't want to lose.

The bottom dropped out for me. I was humbled, made much smaller by this brave young man. My gut told me to offer an arm, a leg, my sight for my child’s safety, his comfort, his health. What gift could there be in his suffering? I support a quiet burden of guilt for the pain I witnessed Trevor endure. Yes, it is part of him, it made him and can’t be extricated from the whole.

How often I wished it away, wished it was some other parent. In the beginning there was a sense of unreality to it. I was going to wake up from a bad dream. It was too much, too tortuous a life for an infant. With disorders of appearance you miss the part when it is not only sad but innocent, childlike, and therefore attractive, “A sick kid! How horrible! Especially since they are so endearing, those poor babies. . .”  No cute here. Your face, your "interface," your window/door to the world. It is not a heart condition or some other lurking insidious clean calamity, it is there for everyone to see but no one wants to look. You become inured to the world looking away, averting their eyes. A facial difference is like a social disease. There is no poster child. There is no cute, no endearing.

That very same weekend I looked at a large poster of a mother in Thailand, clutching her affected child in tender obvious love. I told my group, “I've been there. I know how she feels. She doesn't see a cleft or any deformity. She can’t see it anymore, only when someone else looks at him, only when a stranger’s eyes stop on the surface of him. He is the child she loves and she wants everyone to see how lovable he is.”

When Trev was very small this happened to me. I couldn't see he was different. His features were beloved to me. It is a perspective made up of part love, part wishful thinking, and part self-protection. The determination behind it, the knowledge, brings me here today, flying home from the hardest work I’ve ever done.

I met Rodeth’s mother at the airport as I was departing from Manila. I didn't recognize her at first, she was wearing a plain blue baggage handler uniform. Rodeth was in the first wave of surgical patients. Her mom was very much like all of the other mothers I met. She was scared. She loved her child. She was desperate to get any kind of help. “Ma’am Trudy,” she said, “Thank you, thank you for everything. Rodeth is beautiful.” She came out from behind the counter to embrace me.

“I know,” I said, “I know.”

Thursday, January 16, 2014

22, 23, and 24 March 1999, Surgery, Operation Smile, The Philippines

22 March 1999, Monday night

I’m back from a swim in the dark. I swam a few laps to clear my head. There’s a force within me, an energy source I managed to tap into but can’t turn off easily. So, towel in my wet hair, my roommates wisely slumbering around me, I write to see if I can bleed off the excess energy, staunch the flow. I must reserve this drive for tomorrow.

My first day of surgery: The team worked. I can’t describe it as confusing since each of us played our respective roles and, within the parameters of our roles, there was efficiency and a tightly-woven integrity. The day ran like an elegant machine, a clockwork, actions triggering other actions. The assemblage of these intricate parts whirred away in the dense humidity and heat to accomplish a singular goal again, again, and again.

There are five operating tables in two rooms and seven surgeons. Three doctors are from Manila, here to assist and receive training. Beginning bright and early, a steady flow of patients filed down from the pediatric floor to the playroom outside of surgery. Each child was lightly sedated, carried in for surgery when a table came free, brought out for a brief stint in a makeshift recovery room reworked from an old infant nursery, then placed back into the waiting arms of parents and family. Along the way a thousand checks and rechecks occurred. As the day wore on the average age of the patients went from infant to toddler to grade school. The surgeons assembled their schedule to accommodate each age group’s ability to go without food.

I spent the day floating between the playroom – talking to parents and patients about what was about to happen and assisting my flat-mate Karlene, the child life worker – and the parents’ waiting area, answering questions, speechifying on appearance differences, getting surgical reports, and preparing moms and dads to see and care for their post-surgical child. Somehow my ragged voice is still with me. 

Karlene is the Tasmanian devil. She instantly fixed on each child’s capacity to understand and managed, in whatever brief period of time allowed, to connect with them, comfort them, and convey a simple explanation of their approaching surgery. With a plastic stethoscope, some wooden tongue depressors, and a gift for clownish exaggeration, she imparted a pared-down version of the future for kids and parents to dispel some of the mystery. With or without the help of a translator I witnessed her playing a roomful of nervous people and entertaining them with the story of how a doctor will arrive, they will be asked to drink some medicine they will not like, they will go to sleep and wake up later with their arm fixed straight to accommodate an IV, a bad attitude, and a lip or palate changed forever.

Our translators are a group of nursing students doing their surgical rotation. We all crowd into the playroom – really a storage room in the process of rapid redecoration with crayoned children’s drawings. The sisters were kind enough to provide us with a very loud floor fan. It moves the air around but the noise takes the anxiety level up a notch. 

Once the initial complement of patients filled the operating tables, I received a steady tide of anxious parents to handle in the waiting area. I set up a group of chairs in the landing of a stairway a short distance from the recovery room, where they would be instantly available to escort their post-surgical child back to the floor. I carried around my pile of handouts created to educate and calm nerves. My training for this role was filled with exhortations to use this waiting time as an opportunity to offer an encounter group discussing the myths about birth with a disfigurement, the importance of school attendance, and social problems. I’m feeling a twinge of guilt about this. Yes, I spoke with parents as a group, mostly at the prodding of Quentin’s wife Gail, a professional psychotherapist who joined our team to offer her services where they might be needed and, after the mission is completed, travel the islands with her husband. Her help here is invaluable. The scores of parents and patients passing through defy an individual’s ability to handle them all.

I don’t feel comfortable in front of a group. I never have and didn't hide this when I went through my training. (Sounding mighty defiant here!) I feel more at ease speaking directly and individually with each parent. In my mind, in my memory, the segment of time you endure after they take your baby out of your arms, making a breathless leap of trust - giving up control – waiting for surgery to end, in those frozen moments listening to a speech is as effective as watching the television news with the sound turned off. Instead I made every effort to be there, next to Rodeth’s mother, next to Arthur’s mother, next to little Christina’s father, and tell them how much they must take care of themselves: to rest, to eat, gather their energy for what is coming. I told them as much as they can manage to calm themselves it will benefit their child. I asked them to think about what their child will feel: groggy from the drugs, moody and angry about the discomfort, and surprised at their restricted arm held firmly straight for their IV. Prepare for blood. Prepare for big black stitches. If there is a palate repair, there will be a stitch on the tongue as a safeguard against swallowing it should the inflammation following surgery be severe. I showed them photos of freshly post-op children and more pictures of children with completely healed repairs. Smiling kids, beautiful kids. I told them I was no expert: not a doctor, not a nurse. I am here because, like them, I am a mom, because I traveled this road.

Tears come to me now to think of it. So long ago I went through all this, again and again. The life of my child was so important, to fragile, so precious. What would I have listened to? Are these the right words for it? Does anything break through that kind of terror, the interminable period between when your child is taken away and when they are returned?

I must lie down and close my eyes, even if sleep won’t come to me. Today was a rich, beautiful day, intense with life.

23 March 1999

It is very late and this will be short. We are just returned from another dinner hosted by a local politician and Op Smile supporter. The team is showing signs of wear. I noticed several drooping heads after dinner, sitting through another long-winded welcome/thank-you speech. The pace continues.

A night out with the team after busy day. We look pretty lively here: 
Michael, Isabel, Karlene, and me.

I arrived at the hospital early today to cruise through the wards, see how the patients were doing, and greet the newcomers. They crowded into the hallways and down the wheelchair ramps in the stairwells. One of yesterday’s patients developed a slight fever. The rest make rapid progress: recovering from anesthesia, taking some fluids, getting up and about, removing the IV, and even taking in some food. All but one went home today with instructions to return next week and get their stitches removed by the local surgeon.

There was a different atmosphere on the floor today. The mixes of people, pre- and post-surgery, were buoying each other. Op Smile hands out “smile packages” to all cleft and palate patients before they leave the hospital. It’s an assortment of trinkets: toiletries, toothbrushes, a small toy or two, and always a little hand mirror. I caught several of the cleft-repair children gazing fascinated at their new reflection, holding the mirror in one hand and letting the other lightly explore the line of their new mouth: no more splayed teeth, no more open gap. The palate cases were not as comfortable, all were ready to have their tongue stitch removed.

Parents are thrilled. Considering the overcrowded conditions, the heat, and lack of any privacy, all are thankful and uncomplaining.

I sat on little Christina’s bed chatting with her father and a worn, elderly-looking woman who turned out to be her mother. The small bundle of the family’s food and possessions was neatly tucked against the dented bedrail. Behind her headboard, up the cracked, stained yellow wall, a long lizard crept to the high windowsill to bathe in the sun. The window held no glass or screen. Christina’s mom gripped my hand; tears trickled over the sunburst of wrinkles on her face. “Magandá,” she whispered, turning to straighten her daughter’s sheets for the third time, “Magandá: beautiful.”

The departing people were full of questions about talking to teachers at school and how to handle teasing. I even heard a few questions about what causes cleft lip and palate. There was a little empowerment there, I guess. They withstood the mysteries and fright of surgery; now they are ready to take on the rest of their lives.

I can’t write any more. Sleep sounds so good to me right now. Tomorrow I can’t forget to write about Lucky. I must write about Lucky.

24 March 1999, late

I carried this journal all day thinking I’d get a chance to write. Not! Karlene woke up sick this morning and couldn't come to the hospital. There are several other people down with stomach trouble too. I took over the playroom and, with help from Gail and the nursing students, supervised the waiting room and the pediatric floor. I’m not as good as Karlene but hell, I managed.

Yesterday Karlene and I borrowed a Polaroid camera from one of the doctors and scrounged a packet of film. We compiled a little picture book of the surgery process to use in the playroom: a doctor in scrubs and mask, an operating table with oxygen tanks and big overhead light, the recovery room, a close-up of an IV, etc. It was worth the effort. I pulled apart one of my before-and-after photo albums and inserted the newly-taken pictures. Parents pored over it and immediately started explaining it to their children.

Satisfying work: this is how I feel. I am tired beyond any threshold I've reached before: bright yellow circles burned into my retinas. Each vertebra, right up to the base of my skull, feels held together with old chewing gum. It lends an element of unreality to this reality. I make sure to sustain myself, eating though the heat takes away any appetite and sucking down bottle after bottle of water. I don’t want to get too exhausted to help. There is no question. These missions help children. Their lives are changed.

Lucky. I met him during screening and knew he was unique. He is twelve years old but looks closer to nine or ten. This is the case with many of the children here, poor nutrition and poor development. He was born with a cleft lip and palate along with clawed hands and feet. His dad named him Lucky because his hands have seven fingers altogether. Lucky was also born with a disposition any parent would die for: sweet, engaging, and curious despite difficulty talking, walking, and manipulating things with his hands. Lucky is always happy. I was glad to see him selected for surgery even though, at his age, there’s little chance for him to speak clearly.

Lucky showed up in the playroom Tuesday afternoon swathed in a jonnie coat and eager to play with our toys; offering us his endearing smile along with a wide cleft parting his upper lip halfway up his nose. I made name-tags for him and his “Auntie” and ran through the usual pre-surgical chatter. Lucky was bright-eyed and receptive and, even after dutifully swallowing his sedative, he hobbled into surgery on his own two feet guided a doctor’s steadying hand.

I brought Auntie out to the waiting area and told her to take some time to rest and eat and let her know where she could find me.

“Ma’am Trudy?” she said as if about to ask a great favor. “Please Ma’am Trudy to meet Lucky’s mother?”

I followed her up the wheelchair ramp to a corner of the pediatric floor. A small dark woman was weeping quietly on a low cot. She spoke very little English but her sister, “Auntie,” was fluent. My heart broke for her. Lydia, Lucky’s mother, explained how she loved Lucky even though so much was wrong with him. She’d rather have him the way he is than to see him go through any more hurt. She was afraid: to see him changed, that she might lose him. He was the only child she could have and he was everything to her. Her breathing shook with emotion. I asked her what Lucky’s diagnosis was. Lydia didn't know. She thought her child was born this way because she slept with Lucky’s father after an argument. Lucky was retribution for remaining angry with her husband.

I walked Lydia down to the waiting area and got one of the surgical nurses to obtain a progress report on Lucky. He was sailing through surgery, everything normal and on target. I held her hand and we sat with the other parents and looked through the surgery photos. I passed around pictures of Trevor. I brought a large assortment of them, before and after many of his surgeries, Cub Scout events, Halloween costumes, horsing around in our backyard. I talked about what makes Trev Trev: a rabid Yankees fan, letting the dog sleep on his bed, a geography buff, how he can’t stop from drumming his fingers on everything in my house, his collection of pine cones and rocks, and his dislike of all green food. I talked about what causes cleft lip and palate: heredity, polluted water, and sometimes just a twist of nature – a mix-up in the instructions. We all discussed how hard it is when people can only see what is wrong with your child, when they can’t see past the surface.

I watched this woman turn around. I’d like to take credit for it but can’t. She tapped into some inner resource, the same one providing Lucky with his thirst for living. Lydia gathered herself and, when Lucky was stabilized in recovery, she was allowed to be with him: to touch his face and quietly cry a little more, then be there for him when he needed her.

Lucky and family were checked out today. One of the team pediatricians, Kevin, researched a diagnosis for him, going so far as to call his wife in Iowa to find some textbook entries. He succeeded in giving Lucky’s family some solid information and a contact in Manila for more. Before, the condition was a mystery to them, a punishment. I think this subsided a bit. There is a name, a diagnosis. The blame and guilt fade a little. Lucky left, after clowning for the other kids in the ward and charming the floor nurses with his unaffected, eager attitude. He took with him a wonderful, broad, unbroken smile.

Two beautiful sisters

There is more, much more. So many stories to tell but no time to write them all down in detail: Jessica, a Down Syndrome child, her mother a seamstress with no help and very little money; swaggering Gabriel, a tough and dirty street kid – all alone and not able or willing to talk; sweet Francesca, a tiny quiet toddler and her frightened fourteen-year-old mother.

I must put my head down if I am to work tomorrow. Karlene is better but others on the team are not so well. We’ll need every hand.