Vietnam initiative focuses on babies with Retinopathy of Prematurity




This baby, shown in a photograph taken in November 2017, was the first of the ROP infants in the new initiative with Children Hospital 1: Eye Unit. The photo was taken by Doan Thanh, ROP Project Manager, who had fundraising resource links that mobilized the first in-kind contributors to the project.
Photo by Doan Thanh

This baby, shown in a photograph taken in November 2017, was the first of the ROP infants in the new initiative with Children Hospital 1: Eye Unit. The photo was taken by Doan Thanh, ROP Project Manager, who had fundraising resource links that mobilized the first in-kind contributors to the project.

by Grace Mishler

Ho Chi Minh City, Vietnam, Dec. 10, 2015: Global Mission and Service worker Grace Mishler receives an urgent email from the American Eye Center medical director: “We need your help to find donors.... Within 10 days Baby Hoa will go blind with Retinopathy of Prematurity. Baby needs immediate surgery.”   

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The medical director, familiar with my work in case management services with blind students, asked me to meet with the family and provide social work support services. The parents’ funds were limited. They had traveled to eight medical hospitals in Vietnam. None were equipped to do the surgery. The parents were told to go to Thailand or Singapore.  

Within days of this urgent request, I and other collaborative partners learned that the only Retinopathy of Prematurity (ROP) surgeon in Vietnam was just then being coordinated. In 2015, Dr. J.D. Ferwerda, retina specialist, worked at American Eye Center and initiated an agreement with French Vietnamese International Hospital-South Saigon to do ROP surgeries. Soon after, Dr. Ferwerda established the European Eye Center-Ho Chi Minh City. In September 2017, the collaborative partners became Children Hospital 1-European Eye Center, French Vietnamese International Hospital-Ho Chi Minh City, and our ROP Social Work Team.

This meant that families did have an option within the country to cut cost. However, most ROP families could not afford even the in-country rate of between $4,000-6,000, and most poor families did not have private social insurance. Moreover, the surgery must be coordinated and completed within three or four days of a Stage 4a or 4b ROP diagnosis. The urgency of handling a four-day preparation for surgery puts tremendous pressure on parents, social work case management teams, collaborative partners, donors, and extended families’ support systems.

Statistically, the mortality rate of premature babies is drastically decreasing as Vietnam’s health care system develops, especially in regard to heart and lungs, and so there is a spike in the number of ROP babies living. The infrastructure to support ROP babies with early intervention, detection, and treatment intervention to avoid Stage 4a and 4b lags, especially in rural areas’ neo-natal intensive care units. ROP is an avoidable blindness, but by the time parents bring their infants to Ho Chi Minh City Pediatric 1 Hospital, it is too late. The child is either blind, or surgery is needed.

Thus far, in Vietnam, the major cause of infant blindness is ROP and already blind schools in Vietnam are noticing students’ low vision or blindness is related to ROP. Therefore, doctors and nurses can only inform the parents that their infant is blind or will be in time. Parents leave in shock, and feel the extra socio-educational-economic burden.

In 2017, I organized a small, funded project initiative with the Eye Unit of Pediatric Hospital 1 in Ho Chi Minh City. The initiative was supported by Shultz ROP Crisis Fund through Global Mission and Service, and by Ben Harvey, Our Fellow Man Alliance of Tapai, as well as by other collaborative partners joining in from business sectors, foundations, individual donors, and two key NGOs based in Vietnam.

Our goals are to 1) promote early intervention with the use of a retina photo imaging camera; 2) provide ROP Social Work services by offering a twice-a-week parent support group; 3) ensure that poor families with ROP infants are not left behind if their infant needs surgery; 4) build up human capacity through training, volunteer work, and awareness-raising with young parents or future parents about the complexities related to ROP. If surgery occurs, the baby will need a contact lens, followed by glasses with straps, later removal of silicon oil, and finally, the implant of a permanent lens once the eye is fully developed.
 
Since September 2017, we have interviewed 600 families and had 18 surgeries. We have two full-time social workers. One is a medical social worker based at the eye unit and the other is a social work project manager who coordinates services and advocates for ROP families, including families whose infants are already blind. The social worker ensures that they receive monthly disabilities coverage and are referred to a government blind school that provides once-a-month, two-day training on how to raise a blind child.
 
Undergirding the project initiative is a Vietnamese “Mother Theresa” who scrambles to gather funds for families who need help. The money goes directly to French International Hospital. What is important in this story is that donors get to know the families’ plight. Educating the public about ROP has become an important process for local fundraising. In the near future, there is an initiative to share the stories of ROP families on a TV talk show. Parents’ voices are now being heard, unlike previously when they silently went home in shock and grief.
 
I have familiarity with the lack of systems to support people with disabilities. Since 2000, I have joined the Vietnamese people in a grassroots disabilities movement, especially in the area of inclusive education. Now, I am extending these efforts with health care systems. I continue to link National Vietnam University of Social Sciences and Humanities with community-based field work and research development. In addition, I have more than 40 years of social work experience and am uniquely qualified for this work because of my own blindness. My presence in learning how to cope with blindness brings hope to families.

I am pleased how the small seed money initiative with Childrens Hospital 1 Eye Unit provided an infrastructure to fill in the gaps of services. We are the first working model in Vietnam to respond to a public hospital eye unit to coordinate, network, and link ROP families to systems of care where hope, dignity, value, and worth are applied. Our working model is a team approach:  doctors, nurses, project director, project manager, ROP Senior Social Work advisor, and a medical social worker based at the hospital.

What gives me most joy and excitement, however, is witnessing first-hand Vietnamese people with compassionate, charitable hearts taking social responsibility in supporting families with short-falls of funds. The project initiative for social work case management services has become known among resource networks, and they see the value of our work and are interested in sustaining our efforts by investing in it. It is amazing to watch how ROP families are interacting, keeping contacted on Facebook, and giving tips on how to self-manage infants wearing contact lenses.

Our team approach with the eye units is sacred time, finding solutions with limited resources. These acts of kindness give hope in improving the quality of life and well-being that not only benefit the ROP babies and their parents, but society in general.

-- Grace Mishler works in Vietnam with support from Church of the Brethren Global Mission and Service. Learn more about her work at www.brethren.org/global/vietnam .

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