Talk given at the August 17, 2014 fundraiser at Quinnipiac University
Good afternoon. I will start with a promise: to the extent that it is possible, I will bring you into the remarkable story of the world of rehabilitation in Haiti today, by sharing stories. In a minute we will begin. First of all, though, I want to make sure that my subject is clear: I am going to talk about a project that is just getting up on its feet. Two new academic degree programs are now in the planning stages, at the Episcopal University of Haiti. One will be a bachelor’s degree in occupational therapy, and the other will be a bachelor’s degree in physical therapy. A four-year bachelor’s degree meets the international standard for professional status as an OT or PT in most countries of the world today. These will be the first university-educated OTs and PTs who graduate from college in the country of Haiti.
Now for the stories. Open your imagination and come with me. These things really happened.
The first story will be the longest, as we walk through a clinical occupational therapy intervention that lasted more than twelve months, for a child named Margaret Vincent. Just before the January, 2010 earthquake, a well-cared for, clean, young child who appeared to be about 18 months old was left on the doorstep of St. Vincent’s Center for Children with Disabilities. Now, St. Vincent’s Center has a school, a set of outpatient clinics, a training center for teachers of the deaf and blind, and, for reasons they did not choose, an orphanage for the few children each year who are left on the steps. It was started in 1945 in Port-au-Prince. It is owned and managed by the Episcopal Diocese of Haiti, which is an entirely Haitian organization.
Back to Margaret, on the step outside the door, lying in a box on a clean blanket. She was able to turn her head a little and smile when she heard voices, and reach with delicate hands, but that is all, because her head was swollen to twice normal size, due to hydrocephaly. She did not come with any name. She was named Margaret, after the patron, St. Margaret, of the Episcopal order of nuns who started St. Vincent’s, and her last name became Vincent. By that naming, she joined the family of adoptees with disabilities who had arrived in a similar way over the past decades. Then the earthquake happened: there will be stories about that as well. When the hospital ship docked in the Port-au-Prince harbor to treat earthquake victims, a plea was made to the doctors there to treat this little girl. She received a shunt to allow the fluid in her skull to drain safely away into her abdomen, in order to allow the development of her brain (which had been stunted) to begin again. Her age was determined to be about six or seven based on her teeth that had emerged. Margaret continued to smile, when approached and handled gently.
Our team of occupational therapists, social workers, nurses, teachers of deaf education, and others met Margaret almost a year later, during summer vacation from school, when only the few orphan children were staying in the dorm. She was cared for by two or three dedicated mothers who worked as caregivers in the dorm at St. Vincent’s: Lisa and Madame Fajou were the two we knew from previous visits. Her head had decreased somewhat in size, according to reports, but the damage done to her brain continued to limit her ability to see and to speak. The weakness of her small body and neck meant that she needed complete head support when propped up to sit. The real problem came at meal- time.
The children in the dorm ate twice a day, at mid-morning and mid-afternoon. That was the only time Margaret cried: and not just cried but screamed. When we walked into the dorm one day this was happening, and here’s how it was: a loving caregiver had Margaret’s head tipped back, so that the rice porridge would stay in, and was rapidly putting large spoonfuls into her mouth, right into the breath intake between screams. When I in shock said, “Stop! Stop!” she stopped, but only for a moment. “She is crying because she is hungry!” the dorm mother said, and kept on pushing in the food.
As soon as the bowl was empty, I was able to pick up Margaret (still the size of an 18 month old) and hold her head vertical. The crying stopped: but her chest felt rattly with every breath and sounded raspy. She had been fighting for breath during the feeding and was exhausted. I asked if she had been healthy recently, and the caregiver said, “She is always warm with a fever.” So I could tell that she had food in the lungs, and a low-grade infection, all the time.
Just to be clear, a child with this situation who is handled correctly and fed appropriately could still aspirate food: it is difficult to protect against lung infections. But this way of handling and feeding was like putting a child out in traffic: highly hazardous. And the caregiver had only love and nurturing in her mind while doing it.
Here is what happened next. A volunteer on our team with experience in emergency medical care found a neck brace in the director’s office in a glass case. It fit perfectly! I looked for a way to position her upright, wearing the brace, slightly tilted forward. I looked for a smaller spoon. There was a car seat, left by previous therapists as a positioning chair: but it was too small to provide adequate neck and head support, especially for a child wearing a neck brace. Also, it still gave a slightly reclining posture. So I attempted to feed Margaret, seated on my lap and tilted slightly forward: but I didn’t have enough hands to hold the best posture. With the neck brace on, it was hard for Margaret to move her chin to open her mouth. I considered positioning Margaret in side-lying or on her tummy on a pillow, both of which are sometimes used to prevent aspiration: but decided against it because I didn’t dare propose that she eat the messy food while lying in bed. And then the caregivers protested vigorously about the small spoon: “That is for a baby,” they said. I explained as best I could, with French instead of Kreyol, and with gestures and acting out, the purpose of the changes to the way she was being fed. The light dawned, and they spoke to each other. They said, “We will both feed her: one will hold and the other will feed.” So, without the collar or chair, that is what they did: still using the large spoon. Her position was beautiful, with the best adaptive positioning that we have: human hands.
I would love to say that that was the successful end of the story. But my attempt to keep making therapeutic modifications did not end there. I was afraid that once the many other children returned to the dorm the two dorm mothers would not be able to keep up their plan of taking the time for both to hold her during feeding. In addition, I wanted her to have a place that was safe, comfortable, and easy to use where she could sit up during the day. With the right seat, she would be little by little gaining strength in her trunk and neck, and would also be able to interact socially with the other children.
In the meanwhile I learned that Margaret had been hospitalized with pneumonia, treated, and released. I asked another visiting team member who went to St. Vincent’s later in the year to measure her for a therapeutic seating system; and for an adaptive collar. I wrote up the order and found funding through the generous organization called Red Thread Promise: it cost about a thousand dollars.
Another US medical group received the order by truck delivery and packed it as check-through luggage on their trip. The chair fit! Well, mostly. It was close. Finally, when a third group went to St. Vincent’s, I asked them specifically to observe the use of the seat and collar: was Margaret being positioned in it? The answer was surprising: yes, twice every day faithfully, but only for about a minute at a time. Why? Because when she was up in the chair (even without feeding) she screamed as if in pain. The caregivers couldn’t bear to see her that unhappy for very long. What went wrong? Could it be that since she spent most of her time lying down, she was suffering from severe dizziness each time she was suddenly lifted? Would a slower path to sitting upright help? Was the chair actually a bad fit, with pinching from the straps? I had to give the dorm mothers a lot of credit for continuing to put Margaret into the chair twice a day, considering the distress it caused to them and to Margaret. Margaret still has fevers, and periodic hospitalizations for pneumonia. It might be that that would happen in the US, even with the best of care and positioning. Meanwhile, I now can see that I have succeeded in disrupting the lives of the dorm mothers and Margaret, in a way that, at least so far, has not been much help to them.
This is what I have been learning ever since my first visit to St. Vincent’s in 1997, seventeen years ago.
- What patients and caregivers need, and what I have to offer, often do not match up. I wanted to demonstrate, and have the dorm mothers demonstrate back to me an upright, forward-tilted position to allow the airway to close during swallowing; a pace that allowed breaths between bites; an appropriate spoon size to give small enough bites that Margaret could use her own active tongue and cheek muscles to convey the food to the esophagus; and much smaller meals, given much more frequently.
- The dorm mothers wanted to give all the food that little body was allotted for growth, not losing a single drop, knowing that that was the only thing keeping little Margaret alive. They did not have any thought of smaller meals, given more frequently, in their remotest dreams. Children in the dorm had good food twice a day, for which we are all grateful, AMEN.
- When the dorm mothers understood the problem, their solution was to use their human capital: to use their own hands for positioning, which is still and always the best because human hands are sensitive. Hands are able to adjust unconsciously with beautiful discretion to the child’s changing motions.
- But the small window I was able to give the dorm mothers into the whole scope of the problem was not enough. How would they know the rest of the possibilities for safe feeding? How would they know that sitting up builds muscle tone and bulk? How would I know that feeding children is a matter of life and death in Haiti, because just to have food every day is not to be taken for granted?
- Finally, how could my good intentions be carried out at such a distance, over so many other therapy teams, to finally cause a good result of the right chair, and the right method of using it? It could not happen. The only path out of these difficulties would be to work with a Haitian born and trained occupational therapist, and a Haitian born and trained physical therapist, who would not just recognize the problem but would also know a realistic path to address it, AND would be able to make visits every week as long as needed, to follow through on the treatment plan.
Here is another shorter story, in two parts. One of the other orphans in the same dorm is named Ogeest Vincent, after the month of August. He was born happy, always laughing and humming tunes with occasional words. He was also born blind and unable to walk. First, here is Ogeest’s helpful role during the afternoon of the terrible earthquake of Jan. 2010. The school compound in which the children and caregivers lived had two stories. The upper story fell onto the lower, and the children and their teacher in one classroom died. The wall of the prison next to St. Vincent’s opened, and prisoners streamed out. They came immediately to St. Vincent’s and began pulling out the living children. One of the cooks and school administrators, Maria Carmelle, has spina bifida. She is in her forties or so, and started her life at St. Vincent’s as one of the orphans left on the step. She is now a heavy person, and immobile, except for some ability to wheel her chair. She was lifted, chair and all, over the first pile of rubble into what was left of the courtyard. But the pile of rubble between the courtyard and the street was like a mountain. The men said, “I’m sorry, madam, but we cannot lift you. Stay here tonight, and tomorrow we will come back with more help.” And they left her there, with one child as well, Ogeest, because he was blind and helpless, and they could not locate anyone else at the moment who could watch over him. All that night, as the aftershocks came, and Maria Carmelle looked up to see masonry still hanging over their heads, she would say to Ogeest, “We are going to die!” And, he would just laugh and laugh. She credits him with saving her sanity. The next morning they were both pulled out.
Here is the moment I want you to hear about, on an ordinary day in Ogeest’s life now. He loves music, and has some ability to bear weight on his legs and feet. During one visit in the early afternoon on a hot day, I held his hands to help him stand up, and began singing a song he knows. He smiled and laughed, and hummed along, dancing by shifting weight from foot to foot in front of his chair. The dorm mothers, who had been lightly napping, woke up and rebuked me: “He can’t be dancing, he is too hungry. You will use his strength.” I looked and realized that the children’s porridge bowls were full and sitting on the table under nets to keep off the flies. I assumed it was lunch time, and let Ogeest sit gently back down in his chair. But, nothing at all happened. Drowsiness of all in the room returned. I asked the dorm mother – “When do they eat?” “They eat at 2 pm”, she said – and it was only noon. Lesson learned? Children are quiet and passive for a good reason: they don’t have extra calories to spend on play. Neither do their mothers, sometimes. This was confirmed for me by a study done on appropriate nutrition for children in rural areas, by Dr. Gretchen Berggen. Some children in each small community stood out as healthier. The researchers interviewed the mothers of those children and found that they were picking and cooking greens that grew in the wild, and that they were giving their children smaller meals, but more frequently throughout the day. The researchers hired the mothers to teach these practices to their neighbors. When the researchers returned later to see the results, they were gratified to find more children looking healthy and active. The parents reported that they also had seen a change: their children had become “naughtier” , less well-behaved!
What does a therapist do to show respect for the parents’ management of an extremely limited food supply, but also encourage movement and play?
I have one more short story, about a therapy provider named Evarita Mondesir. I hope she will soon be reading this. Technically, she was a rehabilitation technician, or mid-level rehab worker to use the World Health Organization term. She and one of the members of our new Board-to-be, Gabby Marjorie Dimanche, worked at St. Vincent’s Center for years as the main providers of therapy. One day Evarita asked me to come with her to her other “job”. I found out that she was volunteering her service once a week at an orphanage for children found on the street, some of whom had visible disabilities. She had a couple of kids about whom she had questions and wanted guidance on what to do. Evarita was living the dedicated therapist life. And here’s another example.
Only twice during all my time at St. Vincent’s Center did I find a way secretly to give food to a child who waited all day at the outpatient clinic with his or her mother. I tried to find a program that would give milk to the children who were waiting, but was unsuccessful. Meanwhile, one day I saw Evarita speaking with each parent as therapy finished and giving them each an envelope of something. I asked her what it was, and she said, “Dried soup. I thought of doing it because I saw you do it. It’s a good idea.”
In international development circles, there is an understanding that there are two different models of social justice that guide projects. One is the universal model: our actions must benefit the most people that we can, spreading the wealth as far and wide as possible. The other is the particular model: I don’t know how to solve these massive and complex problems but, damn it, I can save this one person. People who spend years working overseas probably participate in both modes of action.
The first model motivates inventors who change the equations for many by developing culturally appropriate composting toilets, or solar ovens. It can go wrong also: the well-intentioned effort to use aid money to make as many wheelchairs as cheaply as possible resulted in the terrible idea of affixing wheels to cheap plastic lawn chairs. As you can guess, those chairs were useful for about the first hour only, after which they tore apart on the rough roads and became trash. The second model of justice motivates Mercy flights, by which individuals bring children who need heart surgery to the U.S., and international adoptions. This can also go wrong. In my story about Margaret, I would say that the thousand dollar chair and collar were in that category because they did not, in fact, help her.
Does the fact that things can go wrong mean we should not try to do any therapy work overseas? No. One community-based researcher, David Beckwith, probably quoting Martin Luther, counsels that we should “Sin boldly!” He counsels that our mistakes should not paralyze us: and they will not if we understand that they are mistakes and have the cultural humility to admit them and try something else. I propose that our project of new academic degrees at the Episcopal University of Haiti takes both paths to social justice. The first is to build capacity in the country as a whole by supplying education, using a universal model. The second is to move heaven and earth to help one person, as we may do with individual student sponsorships.
This program is opening up a way forward for us. The term “technology transfer” sounds like it refers to electronics, but actually it is a broader term proposed as an ideal by the World Health Organization. It is also called “knowledge transfer”. It means that we approach the good minds and hearts of the people with whom we are concerned, and we give our knowledge base away, as completely and thoroughly as we can. That is what we are involved with here today. We are opening academic programs that will educate occupational therapists and physical therapists to international standards. Then we will stand back to see what they do with it. We will very soon become the learners. New academic programs for OT and PT in Mali, on the continent of Africa, are already producing culturally appropriate therapy interventions for people with disabilities in the developing world. Someday the new OTs and PTs from UNEPH will be presenting at international conferences of the World Federation of OT and the World Confederation of PT, and we will finally be able to know what to do about these baffling situations.
I can’t wait!