Bouam of Adorne Village—A Very Rare Congenital Condition
In 2016 WLP met 9-year-old Bouam. He was brought by his grandfather, his primary caretaker, to meet the WLP survey team outside the home of the village head.
Adorne, in eastern Salavan Province, lies on the main road approaching the Vietnam border. From1966 to 1967 the hills around Adorne were sprayed with approximately 13,000 gallons of Agent Orange. Crops were also targeted with 4,800 gallons of Agent White. Since 2016, new road development has opened up this previously remote section of the former Ho Chi Minh Trail.
Bouam has very long eyelashes and big expressive dark eyes. He also has a severe case of scoliosis and a body deformation making his joints appear swollen. His stunted stature made the WLP team assume he was much younger. Bouam can stand and walk short distances. With no schooling, he understands Lao, knows very basic letters and numbers, and is talented at drawing.
Bouam had never been examined at district level or the provincial hospital to determine what might have been causing his unusual condition and what could be done to improve it. At the time, WLP found no medical person in the district, province, nor Lao or foreign doctors in Vientiane, who could identify his condition. His special case required consultation with one of the visiting teams of medical experts to Laos.
Not until November 2019 was WLP able to bring Bouam, then 13, to Vientiane. He and four other patients went for check-ups on their scoliosis and bone conditions with a team of U.S. doctors specializing in spine abnormalities. By then, Bouam looked much thinner, and had developed purplish tumors on his hands, back and face.
Bouam’s case immediately sparked attention. Lead surgeon Dr. Michael Hartman of Indiana worked into the night consulting overseas surgeons to diagnose Bouam.
Surgeon Hartman and Lao surgeon Kongkham of Friendship Hospital diagnosed Bouam with Maffucci Syndrome (purplish tumors) or the similar Ollier Disease. Both are rare congenital birth defects. Ollier Disease can eventually lead to chondrosarcoma, a soft tissue cancer recognized by the VA associated with exposure to Agent Orange-Dioxin.
Subsequently, Bouam had blood tests, X-rays of all of his bones, and an Echocardiogram at Children’s Hospital as well as an MRI at the Friendship Hospital in Vientiane. In addition, Bouam was provided special nutritional food packets to boost his strength. He looked decidedly healthier and stronger by the time he left for home several weeks later. In the future, Bouam may need to have a bone biopsy to test for cancer.
Bouam’s case is an example of how important it is to ensure there is early identification and early intervention for children with disabilities in Laos, and especially how challenging it is to provide this type of care in remote regions of the country. The closest hospitals do not have training in identifying more complicated cases of birth defects, nor are they knowledgeable about how to get a child like Bouam referred to specialists at the Provincial or National level hospitals. Navigating the complexities of the Lao medical system is overwhelming especially for those who have little or no education in the Lao language. WLP staff assistance was necessary to work with Bouam’s grandfather to get him to Vientiane and to the right medical professionals.
In the absence of medical social workers WLP had to advocate for Bouam’s care at all steps and bring him from one hospital to another to finally reach a diagnosis and develop a treatment plan. Even the first step of care, to get on the bus to Vientiane from Adorne was out of the reach of Bouam’s family who are poor subsistence farmers. They simply did not have access to the cash for travel and daily living expenses away from home. Moreover, once they left their province for Vientiane the medical insurance system in Laos was no longer valid. Physical therapy, if it was determined to be required, was only available at the provincial capital. Financially, appropriate care was out of reach for most in the rural villages, especially if a long stay away from home was required.
Additionally, complex coordination is needed. To date this process is still being led by WLP staff and requires much logistical support to be provided for the family when a child travels to Vientiane for medical care. Traveling so far from home is stressful for the families. One of the biggest obstacles is building trust with their doctors so that the tests needed to make a proper diagnosis can be conducted. In future, medical social work should be developed to guide the family through the medical system to find district and provincial staff trained in birth defects and disabilities closer to home.
Bouam was not attending school, so he did not qualify for the nutritional support program in his village causing malnutrition that contributed to his small stature. Bouam would benefit from non-formal education classes to enable him to catch up to his peers and eventually receive training in a vocation that he could engage in his village of Adorne. Gaining independence for a teen such as Bouam is a process that will need multi-level intervention to achieve. Even a solution as simple as a wheelchair remains complicated by the fact that the paths in his village are bogged down in mud half of the year.
Nonetheless, his case also shows that with the right resources and working closely with the Lao infrastructure a great deal can be done. Those providing services also benefit from the hands-on learning of how to help persons with disabilities navigate through the existing medical system. The caregiver, head of the village, district and provincial level health staff, and doctors at the Children’s hospital in Vientiane all gained skills to better address Bouam’s particular situation and will be better equipped when the next child in need arrives.