Every time I wrote a blog entry (whether I post it or not) one of the questions I ask myself is, “Who am I writing this for?” And if I'm honest, the answer is always that I’m writing it for myself.
I write to tell you what I want you to know about me. I often write to entertain, because I want you to think I’m entertaining. I often write to share little amusing details of my life, because I want you to think my life is interesting. I often write as a way to step outside of my day-to-day life and imagine Cambodia as it first looked to me, when everything was a novelty. But let’s just all acknowledge that writing a blog is a presumptuous and self-centered thing.
But I write this time to tell you a bit about some of my work, to try to tell you some of the stories of the 37 children who are my “caseload” here, and to ask for your help and ideas about how to keep this program alive.
I have not written much about my job, partly out of my desire to be entertaining and/or amusing (which this will not be), partly out of respect for the privacy of the children and families I work with (because there is no explaining what I do without telling you about some of them), and partly because after doing the work and thinking about the work, I sometimes need to separate from it all to maintain my own equilibrium. But I think the time has come to share some tales, and I am motivated by the fact that the program is potentially in danger, which means these children and families are in danger.
Please bear with me while I try to explain things that I find difficult to put into words.
When I started this job last year, the program was brand new and many children with disabilities had been identified and "enrolled" but there was no medical staff yet to proceed with getting them the help they desperately needed. My job, as the newly-hired nurse, was to make assessments, find appropriate medical care for these kids, make sure parents followed up with medications and recommendations, etc. (As with any newly-created position, the role has evolved as the needs were revealed.) At the same time, a Khmer physical therapist was hired to provide PT and access wheelchairs and other assistive devices for the large numbers of kids on the roster who have CP.
Each time I met a new child and family, there was a new adventure to be had in trying to gather history and information (all done through my wonderful translator) and to make an assessment and a plan of action. It was home-visiting at its finest – and felt oddly familiar, even in such a wildly different environment.
Some cases were relatively easy: there was a ten-year-old boy who was almost blind. He had never been to school. We brought him to the local children’s hospital, where he was diagnosed with congenital cataracts. He had two surgeries, and within a few months, he was able to see clearly enough to start school. Mission accomplished.
Some cases were far more complicated but equally successful in the end. An eight-year-old girl who had been born with club feet ended up having two surgeries in Phnom Penh, dressing changes at home for weeks, ongoing physical therapy and braces made for her legs. She is walking normally on the soles of her feet now and also going to school.
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| Club feet - she had been walking like this her whole life. Her parents took her for treatment when she was very young, but couldn't afford to bring her back for follow-up so it wasn't successful. |
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| This is how she looks after two surgeries and several months of rehabilitation! |
Many cases involve children who can never be “cured” of their disability, but whose quality of life can be significantly improved:
- A family whose child has ongoing respiratory problems was provided with a nebulizer and a lot of parent education, and they can now take the nebulizer to the neighbor’s house where there is electricity and treat his breathing difficulties – and his oxygen level rises. He hasn't been hospitalized since he got the nebulizer eight months ago, after previously being hospitalized 2-3 times a year.
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| The only nebulizer for miles around... |
- Several children who were getting by on substandard nutrition because they couldn’t eat regular food are now receiving some formula or soy milk supplements and their parents have been taught ways to prepare food and feed their child appropriately so they have gained weight. One 9-year-old girl has grown from 22 pounds to 33 pounds. A 4-year-old boy who had been living on nothing but diluted condensed milk for two years was hospitalized for his malnutrition and provided with appropriate formula. He has now gained several pounds and learned to sit up by himself for the first time.
- Some children have been able to get wheelchairs or walkers, allowing them to leave their homes and explore their villages independently for the first time.
- Several children who had untreated seizure disorders for many years are now medicated appropriately (or as appropriately as we can get given the limitations of what’s available in Cambodia) and are now seizure-free or very close to it.
- A number of children have been seen by a dentist for the very first time to have treatment for abscesses or extraction of teeth too far gone to save. Almost none of the children we see (or their siblings) had ever had a toothbrush before we provided them, and I can see from the condition of their teeth that they are in fact using it regularly.
- Two children with chronic ear infections, perforated eardrums and hearing loss are now receiving treatment. One got a hearing aid, which it turns out doesn’t help that much (again, a function of the limitations here) but his family has learned some communication techniques (thanks to our visiting speech language pathologists, who are worthy of their own post) and they feel that his ability to communicate has improved.
- One 5-month-old child with untreated (perhaps untreatable?) hydrocephalus is just a little bit happier now that his mother and grandmother have learned new soothing methods and have a stroller. His head is so large and heavy that it was difficult to carry him for long, so he spent most of his time lying inside the house. Now he has moments of quiet alert time while he busily sucks on his new pacifier and gets walked around the village in his stroller that we’ve customized with rolled towels and foam cushions.
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| A generously-donated stroller; a happier family. |
Some cases are difficult, and will not ever have happy outcomes. A few children with severe CP or other neuromuscular problems have parents who are not really interested in learning to do PT with their child, or simply do not have enough time in the day to do it based on their struggle to provide the most basic needs for their family. We can’t make a difference if the family isn’t engaged in the process.
But many parents are very engaged in doing everything possible for their kids, despite their own health problems, their poverty and stress and hand-to-mouth existence. They take unpaid time off work to bring their children to the hospital. They cook special food that takes extra time. They learn how to give medications at the right time in the right dose and they do it every day. They brush their children’s teeth, even though it may have once been a totally foreign concept. They wipe the drool from their child’s chin to prevent skin irritation. They take care of incontinent children without diapers or washing machines or running water. They do physical therapy every day to improve contractures and strengthen muscles, and they rejoice when their four-year-old can finally sit up by himself. They help their five-year-old daughter to practice with a new rolling walker until the child has gained so much skill and strength that she is finally able to walk by herself, after years of sitting and watching the world go by.
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| A lovely home visit with parents and children (Pardon my amateur attempts to protect identities.) |
One family stands out in particular. They are as dirt poor as everybody else in Cambodia, living in a palm-leaf structure that looks more like a lean-to than a proper house. The mother sells vegetables and other "groceries" and the father tries to catch fish, frogs and lizards to sell or feed his family. They have three children, all boys. The youngest boy is five, and is a bundle of devilish energy and mischief. The oldest boy is ten, and he was the same sort of active kid until he started having seizures and losing motor skills at age 6. Now he is blind, deaf, unable to move and barely able to swallow. He weighs 32 pounds, down from 48 pounds six months ago as his condition took a swift downward turn after a long slow decline. The middle boy is eight. He can still walk with some help. His seizures are under control. He clearly has cognitive and motor delays. All of his front teeth rotted out of his mouth, but they brush his three new permanent teeth until they practically sparkle in the sunlight.
There is no way to diagnose what’s happening with these three boys, but the situation suggests it may be a genetic degenerative disease. We don’t yet know what will happen to the youngest boy. We can guess that the oldest boy will not live much longer. We can’t fix that, but we have talked to the parents about how to make him as comfortable as possible, and how to make informed decisions about what could happen if he gets hospitalized again. We tell them every time we see them that we see how much they love their kids and how hard they work to take good care of them, while the neighbors ask them why they bother trying.
All of these parents love their children. In the face of their own poor health, malnutrition, illiteracy, PTSD, poverty, and/or other challenges, they do the very best they can to take good care of children with complicated needs. Many of these children could lead normal healthy lives in the US. I just want them to have the best possible life they can have here.
But the program is in financial trouble. It has been a difficult year for the program as it needed to apply for its own NGO status and break away from its original parent organization. There have been unexpected costs, and a decline in charitable giving – though the vast majority of the funding comes from one woman who founded the program and pays for most of it out of her own pocket. The hope is that in the year ahead there will be opportunity for grants or other access to funding, but right now, there is a very real possibility that the program will scale back drastically or even close. And while that leaves me a bit concerned about my income, it leaves me far more concerned for the well-being of these children and their families, and the well-being of my two very dedicated and skilled Cambodian co-workers.
What would happen if we stop what we’re doing? As I’ve said, these parents love their children and want the best for them, and some of them have learned a lot of strategies that they could potentially sustain on their own. But none of these families were able to access appropriate medical care before we came along to help. They didn’t know where to take their child for good care, or they couldn’t afford the transportation costs to get there, or they were intimidated by doctors and didn’t understand instructions about medicine. In some cases, they got horrible care and were told that their child’s problems were a result of the parent’s own wrong-doing – they were told they were lazy or crazy or worse. So they never went back. They took their guilt and helplessness back home with them and waited to see what would happen.
Regular physical therapy, constantly evolving as the child makes progress, requires a trained PT to teach parents what to do. Children who have gained weight because we can provide some nutritional support will lose the ground – and weight - they’ve gained. A ten-year-old boy, slowly wasting away to nothing, will have no outside support for his parents to help them ease his discomfort. Kids with dental abscesses will suffer untreated at home. Underweight children with severe diarrhea could join the ranks of the 60,000 Cambodian children who die every year of mostly preventable or easily treatable causes.
This post is already far too long. I apologize - attribute that to my level of concern and passion about these children and these families. Thirty seven children is a drop in the bucket – the country is full of children like this that we will never be able to reach. But I again remind myself of the Helen Keller quote that my friend Lori uses so wisely in her own work:
I am only one, but still I am one.
I cannot do everything, but still I can do something;
and because I cannot do everything,
I will not refuse to do something that I can do.
For these 37 children – and a few others we can hope to serve – we do something. In my wildest dreams and imagination, this organization could provide a model for others to do the same. In my truly wildest fantasies, this work would one day be supported by the government of Cambodia and all children in Cambodia could have access to reasonable health care and support – but probably not in my lifetime. I will leave reforming the government to someone else, but in the meantime, I would like these children to continue getting what little help we can give them.
The budget for the whole program is about $50,000 per year. This is what I know about where that money goes:
- As expected, a significant portion of that is salaries. The two full-time amazing Khmer staff earn $250-300 per month. I am paid by the hour up to a maximum number of hours monthly, after which I work anyway because the work needs to be done.
- We rent a tiny office to have a place to store supplies, keep records, and have meetings.
- We have a truck, which makes it possible for us to transport children and families and wheelchairs and water filters – some of these children live almost two hours away from Siem Reap. When it’s more cost-effective to transport children by tuktuk or motorbike or other means, we cover the transportation costs.
- We pay a small fee to the local hospital for expedited service so we can use our time more productively and get more children seen by doctors and dentists.
- When children have to stay in the hospital, we support the family by providing money for meals – the hospital does not supply food – or an inexpensive guesthouse room to stay in if needed.
- We provide toothbrushes and vitamins and other basic supplies, most of which are donated.
- We supply medicines that families could not otherwise afford, from simple Tylenol and antibiotic cream to medication for the nebulizer.
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| This is the kind of random unidentified medicine people often buy in the village. Many people take inappropriate amounts of inappropriate drugs, and children are especially at risk for toxic overdose. |
- We supply filters so families have a safe source of clean water.
- We supply formula and soy milk to a select few families, at a cost of about $30 per month per child. We would like to provide more in the way of nutrition.
- We would like to be able to provide vaccines someday for those who need them.
- But mostly, we would just like to be able to continue doing what we do.
I’m not a fundraiser. I don’t have friends with deep pockets. I don’t like asking for help in the form of money. But if you know of grant sources, or someone who would like to volunteer time to write grants, please let me know. If you know someone who might be interested in financially supporting this project, please forward this to them. If you want to contribute financially, the founder has created a fundraising page at http://www.indiegogo.com/projects/201887 and you can make a tax-deductible donation there.
If you have more questions about this, please ask me. If you know of any group in Vermont that would like to hear more about this in person, I’ll be there in October and would happily come and talk about it. I believe in the value of this work, and I’ll do whatever I can think of to try to sustain it.
If you managed to read this far, thank you. J
