Pham Thi Do and Her Family

A strong mother supports a bed-ridden daughter and two ailing sons

 

Profile by Armando Gallardo and Iain Guest, August 2015

As was the case with several of our family visits, we left the family of Nguyen Van Xoan and his wife Pham Thi Do feeling that the burden of Agent Orange falls most heavily on mothers. It’s not that fathers are uninvolved – no-one could be more concerned about his children than Mr Xoan. But mothers seem to feel the anguish more deeply. They give care, but they also need caring for.

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Nguyen Van Xoan (left), his wife Pham Thi Do and their sons Tuan, center, and Trung. Their daughter Luyen is too ill to leave her room.

Nguyen Van Xoan is a former veteran. He was poisoned by dioxin after he drank contaminated water while serving in the army in Quang Tri province. He remembers it like this: “I saw a plane drop spray over the forest and saw the forest burning. I covered my face. I drank the water. I thought the water came from the rain. It was fresh and did not seem dangerous.”

Mr Xoan was invalided out of the army in 1979 because of health problems that seemed minor at the time – headaches, coughs, fatigue. But he did not improve and in 2007 he was certified as an Agent Orange casualty by the Vietnamese government. That year he began to receive compensation of 2 million Dong a month.

Mr Xoan and his wife Pham Thi Do had their first child soon after the war ended. The child died from “brain damage” which they now assume was linked to Agent Orange. The second child died at birth from a miscarriage. The next two children were born healthy and went on to marry. Their photos hang proudly on the wall.

Their first child to survive with AO complications, Trung, was born in 1979. Trung enjoyed a normal childhood until his legs began to fail him. Today, the arches under his feet are malformed, and this prevents him from walking properly. When we arrive to visit with the AEPD outreach worker that oversees this family, Trung shows us photos of his father visiting the graves of his friends who fought during the war but did not make it home.

Tuan the Craftsman

Trung’s younger brother, Ngyuen Van Tuan, born in 1995, suffers from similar complications, although his legs are more severely malformed than those of his brother. For a while Tuan tried to walk, but as his legs got worse his classmates began to make fun of him. This left his parents with no other choice but to take him out of school. A few months passed and the doctor informed them that Tuan would need a wheelchair for the rest of his life. Tuan and his brother also share the added burden of hemophilia, which Tuan contracted at the age of five.

Nguyen Van Tuan, 18, makes elaborate models from recycled popsicle sticks. AP bought his first model, of Hue University.

Tuan has much to complain about, yet he shows no resentment and has a winning smile. He is proud of his father – veterans in Vietnam are treated like heroes – but he also wanted desperately to stay in school. “I do not blame my father,” he says. “I am proud of him. But I faced many social barriers at school. Students did not play with me. I then developed a problem with one leg and was forced to use a cane. My grandfather used to take me to school. Then my other leg went bad and I had to leave school altogether.” He was 15, and just entering grade 9.

Undaunted, Tuan turned to handicrafts. Helped by a mentor from the AEPD, who also attends the same self-help group, Tuan learned how to make objects from simple materials that are easily available at the local store. 

Tuan has turned the house into a personal studio, with chopsticks, glue and varnish spread neatly on top of a table. He made a wonderful model of Hue University – the oldest in Vietnam – from hundreds of chopsticks and sold it to the Advocacy Project during our visit. It took three days to make and was his first sale. Quite an occasion! Tuan’s dreams don’t end there. “I want to make web pages so that I can work from home,” he tells Armando. Tuan’s main problem comes from a lack of a computer and internet connection, but he does not expect that to hold him up for long. “I’m already reading about it from books I get from the market,” he added.

“Tuan has much to complain about, yet he shows no resentment and has a winning smile. He is proud of his father – veterans in Vietnam are treated like heroes – but he also wanted desperately to stay in school. ‘I do not blame my father,’ he says.”

 

Luyen

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Pham Thi Do and her daughter Luyen

Tuan’s older sister Luyen is another Agent Orange victim. She was born in 1992 with cerebral palsy. We meet with her on a stormy day as she lies in bed, pressing her nails into her hands and grinding her teeth. This, says her mother Pham Thi Do, is a sign that “the weather is about to change.” At times, Luyen squeezes her nails so hard that they cut her palms. Her parents give her a folded carton to hold in her hands to protect her from further cutting. Mrs Pham welcomes Armando with a smile when he enters Luyen’s room, and she continues to wipe her daughter’s face with a damp cloth.

Soon after, Mr. Xoan silently peeks into the room. Armando takes his photo and feels like crying. Mr. Xoan seems lost. His wife, in contrast, is totally engaged in caring for her daughter. “Taking care of Luyen is a full time job, 24 hours of the day,” she says. Indeed, for the next few hours we see how close the bond is between mother and daughter. Luyen caresses her mother’s arms and shoulder whenever she can, as if showing her affection and gratitude for the sacrifice made by her mother.

As Armando looks for anything that will help tell the family story, he notices a photo lying on a desk. The children are shown standing straight and tall, which is very different from the way they are in real life. Armando inquires, and Mrs Pham replies: “A friend of mine took our faces from different photos and photo-shopped them to the bodies.” Perhaps this is the way Mr. Xoan and Mrs. Pham want to remember their family: healthy, looking good and with no sign of the damn herbicide that changed their lives forever.

Phan Thi Do, at work in the fields

In one of Armando’s later visits to the family, he finds that neither Mr Xoan, Tuan or Trung are not at home. “They went to Hue for their monthly hemophilia treatment,” says Mrs. Pham. The treatment costs 6 million Dong ($270.6), which is a huge amount, even though 80% is covered by insurance. On Armando’s next visit Xoan is at home but the family buffalo is nowhere to be seen. “We had to sell the buffalo to pay for the hemophilia treatment of Tuan and Trung,” says Mr. Xoan. When one considers that this family only receives 5.3 million Dong in AO compensation a month, it is hardly surprising that they are constantly selling assets to cover the medical bills.

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Pham Thi Do’s work day begins at 5.00 am in the fields

By this time, Tuan has returned from the treatment in Hue. Luyen, as always, is lying on her bed in the darkened room. But this time Mrs. Pham and Trung are not to be seen. “My son, Trung, is still in Hue because he wasn’t doing so well when he was first seen by the Doctor. My wife is out in the fields harvesting the rice” says Mr. Xoan.

We notice rice seeds scattered all over the floor. It had been harvested the day before. Harvesting happens twice during the year and Armando had been hoping to take video footage of rice paddy, so Mr. Xoan agrees to take him out to meet his wife in the fields.

Up to now we have seen Mrs. Pham as a caregiver, mother and wife, but here she is in another demanding role. Her day started at 5 am and she has been out in the sun ever since, working the fields as if there was no tomorrow. We all go back to the house and Mrs. Pham immediately begins caring for her daughter Luyen. Armando is amazed at her strength.

Trung in hospital

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Mrs Pham’s son Trung in hospital for a blood transfusion

Mrs. Pham explains that Trung is still in the hospital in Hue. Most of the AO families we meet are indoors because of their limited mobility, but here is a chance to meet a family member away from the home. Armando asks if he can visit Trung at the Hospital in Hue, which lies three hours from Dong Hoi. The family agrees and off they go. Trung looks healthier because of the blood transfusions he had been receiving, but is also worried.

“There’s a shortage of blood at the hospital so I might not get one for a few days,” he says. Indeed, when Armando asks the Doctor when Trung will get his next transfusion, he is told that no one knows because the availability of resources is so unpredictable. Armando then remembers something that Tuan, Trung’s younger brother, had said at the house: “During the week I was in the hospital, I saw three people who died.” Apparently this is quite common. After some back and forth Armando is told that Trung would not be getting any transfusions over the weekend. Armando had no option but to leave, hoping for the best.

Armando returned later to Mr. Xoan’s house to say one last goodbye. It turned out to be a very emotional exchange. “This family will forever stay in my heart,” wrote Armando later. “I know that Linh, my interpreter and co-worker, feels the same. I hope we meet again soon.”

Update by Jacob Cohn, July 2017

A Family Forced Apart

pham smallWhile reading our previous posts about this family, I’d been particularly intrigued by their son Tuan, who developed a talent for making handicrafts and models despite losing the use of his legs at an early age; he’s converted part of the family’s home into an artist’s studio and has sold some of his work through AEPD. I was disappointed to learn from Mr. Thuan, on the way to meet the family, that we wouldn’t be able to meet Tuan on this trip. My disappointment soon turned to horror as I learned more about the family’s current situation, possibly the worst of any family I’ve met so far.

Pham Thi Do and her husband Nguyen Van Xoan live around 15 minutes north of Dong Hoi, in a rural village—their home is larger than those in the city. The house appears empty as we arrive in the front yard, but Mr. Thuan walks over to a wooden bed next to the wall, and I’m startled to see the family’s daughter, Luyen, lying inert on a mat. Flies buzz on and around her body while a dog rests underneath the bed. Luyen is afflicted with cerebral palsy, and when Mr. Thuan speaks to her she stirs and sits upright slowly, with obvious difficulty. She can’t speak but seems glad to see Mr. Thuan, who stands with her for a few minutes until Mrs. Do arrives to invite us inside her home. The living room features large portraits of their two older (healthy) children at their weddings, certificates honoring Mr. Xoan’s military service, and commemorative plates bearing the likenesses of Ho Chi Minh and American War-era military leader Vo Nguyen Giap. Clearly Mr. Xoan is proud to have fought in the American War, in spite of all the pain that would come after.

Normally, this house would have five inhabitants: Mr. Xoan, Mrs. Do, Luyen, Tuan, and Tuan’s older brother Trung (who has difficulty walking). But for almost 6 months Mrs. Do and Luyen have lived by themselves. Tuan, a hemophiliac, had a “shock” earlier this year—I don’t press for details about this but I gather it involved serious internal bleeding—and needed to be hospitalized in Hue, the nearest big city (around three hours away by car). Tuan used to go to Hue every month for treatment, at great expense, but since his shock he’s gotten “worse and worse,” Mrs. Do says. Coming to the hospital from so far away is no longer feasible for him, and the family’s health insurance wouldn’t pay for a hospital stay longer than 10 days.

With no other option to prevent his son from getting even worse, Mr. Xoan has rented a room in Hue, where he and Trung now live full-time and care for Tuan. By being close to the hospital, Tuan can remain under observation and get the treatment he needs even without staying in the hospital full-time. But this means that Mrs. Do, now the family’s primary breadwinner, must care for her daughter alone as well as keeping up the household in her husband’s absence.

Mrs. Do tells me that one of the few bright spots for her this year has been her buffalo, bought with funds from AP donors last summer. The buffalo is in good health, and she’s used it for farming—much of her yard is taken up by okra plants. Her cousins and other neighbors have done what they can for her, helping with chores and with caring for Luyen, and she’s gotten help with money from the community and from organizations like the Red Cross, the Vietnam Association of Victims of Agent Orange/Dioxin (VAVA), and the Women’s Union. Still, this is a very difficult time for Mrs. Do, and I can tell everyone in our party is as touched as I am by what this family is going through.

Mrs. Do tells me that she’s in daily contact with Mr. Xoan by phone for updates on Tuan’s condition, but she cannot visit Hue herself—that would mean leaving Luyen behind since she cannot travel. I ask Mrs. Do (delicately, I hope) if she sees a chance of Tuan getting well enough to come home. “I’m not sure,” she responds; even if he were able to come home, he’d need to be in the hospital a lot, and traveling to Hue is time-consuming and expensive. Though none of us say so outright, her description implies that she may never get to see her son again.

The hot weather makes Luyen more “violent,” Mrs. Do says, but otherwise her condition is unchanged, and there’s not much that can be done for her except constant care and medication. Mrs. Do hopes to eventually move Luyen to the mental hospital currently under construction in Dong Hoi, where she can be cared for by professionals. “Does she have any understanding of what’s happening to her brother?” I ask. “Not at all,” Mrs. Do says.

Mrs. Do takes us to visit the buffalo in a nearby barn, where we’re joined by an officer from VAVA. The buffalo is due to give birth in July, and she asks me for AP permission to sell the calf—I respond that she doesn’t need permission, since the buffalo belongs to her. I resolve to think about any more ways AP could support her, though none of the problems she faces have easy solutions.

As we leave, Dat repeats something Mrs. Do said that wasn’t translated during our conversation but which obviously moved Dat: “Possessions cannot make humans, but humans can make possessions.” In spite of the hardships she’s already endured, Dat explains, Mrs. Do would give up all she has for her children.

Update by Karen Delaney, January 2018

AP supported the family of Mr. Xoan in 2017 with a cow and calf. When we arrive they are happy to report that the cow had a healthy calf five months ago. The animals have been a great resource to feed the family. They use them for farming, which brings them rice and they also use the fertilizer for their garden, which has vegetables. They used to have pigs, but sold them because they were devalued at the beginning of the year – something I’ve heard from other families. Now they have 20 chickens, which gives them eggs and also meat.

I’m happy to see the whole family together, since on our last visit both sons were at the hospital in Hue. The oldest son, Nguyen Quang Trung (38), tells me he got back about three months ago, and his brother Nguyen Van Tuan (22), 20 days ago. They were both going back to the hospital the following day, accompanied by their dad, Mr. Xoan. He tells me he takes care of the boys, while his wife, Phan Thi Do, takes care of their daughter, Nguyen Thi Luyen (26). All three children are victims of Agent Orange.

Both Trung and Tuan have to go to the hospital every month to get hemophilia treatment. They also have problems with their legs. Trung explains that his case is not as bad as his brother’s, who cannot walk and sits in a wheelchair. He can help the family in the rice field, and around the house. He receives only 800,000 Dong per month as AO compensation. Tuan used to build houses with popsicle sticks between the visits to the hospital when he was feeling well enough. However, a recent flood destroyed his art craft equipment, so he can no longer build the houses and sell for profit. He tells me he has written to the Australia Hemophilia Association to ask for support to rebuild his studio. He says it would cost under 5 million dong ($220 dollars). He receives 1.4 million dong a month for Agent Orange compensation.

I ask about the expenses of going to Hue every month. Mr. Xoan tells me that insurance only covers 15 days in the hospital, so when their health situation is worse and they have to stay longer in Hue, they rent a one-bedroom apartment near the hospital. He says it costs between 500k to 1 million dong per month. Their insurance only covers  150 million dong per year for both children, so with the cost of travel, medication and lodging, they barely make ends meet.

Their daughter, Nguyen Thi Luyen (26), starts screaming from her bed, which is outside the house. Phan Thi Do goes there and holds her hand to calm her down. Mr. Xoan tells me her situation hasn’t changed for years. She cannot recognize anyone, nor can she walk or speak. She receives 1.4 million dong in AO compensation, like her brother Tuong. Mr. Xoan, shows me all their paperwork, including birth certificates, AO compensation receipts and medical bills. He talks a lot to me, even though my translator is busy talking with his sons. He knows I can’t understand but keeps on talking to me, making eye contact and holding my hand. I ask about his health. Ngoc tells me he has nervous disorders and high blood pressure, so he needs to go to Danang to take medication three times a year. This also adds to their expenses. He gets 2 million dong per month as compensation.

Both parents are very dedicated to their children, but it seems to me that Mrs. Phan Thi Do does the heavy lifting. She is not a victim of Agent Orange herself, so she does most of the work around the house. Apart from caring for Luyen, who needs help with everything, she works in the rice field, takes care of the cow and both calves, grows vegetables in their garden and also collects iron to sell. When Mr. Xoan is away with the boys at the Hue hospital, she does everything by herself. Their two healthy and married children, one boy and one girl, sometimes help in the field, but not too much.

The picture of their two healthy children’s wedding is standing in the living room. When I ask about grandchildren, Mr. Xoan tells me they each have one kid who are both healthy so far. They are 14 years old and 5 years old.

At the end I ask if the animals have helped relieve some of the burden of this family, and the three men around the table (Mr. Xoan, Trung and Tuan) all start talking at the same time. Ngoc translates to me that they are very happy because apart from bringing them food, they can sell the animals in the case of an “emergency”, for example if the sons’ health deteriorates.

I take a picture of the whole family outside, knowing that they’ll be separated for the next month, as the boys and father go back to Hue the next day.

Later, I talk to the AEPD team and AP staff to see if we can help buy Tuan’s equipment to rebuild his studio. AP commits to help him with 5 million dong this year.

Update by Marcela De Campos, August 2018

Nguyen Van Tuan, 22, died from hemophilia in August 2018. Peace Fellow Marcela De Campos visited his family to convey our deep sadness.

We arrived at Mr. Xoan and Ms. Do’s home a little before lunchtime. There were black banners with golden lettering hanging behind the altar and around that part of the room. Mr. Vinh lit 4 incense sticks and handed one to each of us while the family watched. (All of this was happening in silence.)

We took turns praying and then we each stuck the incense into a small ceramic bowl where other incense sticks were still burning. The other sticks were all different lengths and had been burning for different amounts of time. From what I gathered, community members, relatives, friends, etc. come to visit the family then leave the incense stick burning in the bowl after praying for the deceased. It was heartening to see that the bowl was nearly full.

Karen Delaney took this family portrait in January 2018. Tuan, seen here in his wheel chair, died in August.

We sat down with them. Ngoc (from the AEPD) and Mr. Thuan (an AEPD outreach worker) took the lead. The couple wore black pins on their shirts. The pins will be worn every day for the next 2 years; they symbolize the loss of a loved one. Ms. Do and Mr. Xoan thanked us for coming and Ngoc translated for me. I expressed our sincerest condolences, how fond we were of Tuan, and that we are thinking of them.

Ms. Do responded that she is so grateful to AP and Iain in particular for being such a wonderful friend to their family. Ms. Do and Mr. Xoan took turns explaining the events but Mr. Xoan spoke with a lot of physical difficulty. Ngoc whispered to me that he has some kind of mental disability as well (but I couldn’t find anything that would suggest we knew that in our profiles of their family). Trung sat with us but came in and out of the room often to get tea, ice cubes, etc. and check on Luyen that was screaming outside – it was an incredibly hot day.

Tuan had been ill since the end of last year and was spending more time in Hue Hospital than out. The Vietnam Association of Victims of Agent Orange/Dioxin (VAVA) helped support some of the expenses not covered by insurance; the family sold the buffalo calf in June for nine million Dong ($385). The calf income also helped pay for expenses. Ultimately though, his condition was worsening. Approximately 28 days ago the doctor advised Mr. Xoan, Tuan, and Trung (his brother) to return to the comfort of their home because there was nothing else that could be done. About 4-5 days after they returned home from the hospital, Tuan passed away. Unfortunately, in the middle of the conversation, no one thought to ask the specific date.

To add to this though, Mr. Xoan was in such a state of shock after his passing that Trung had to take him to the mental hospital in Da Nang. He spent 10 days in the hospital and now is receiving medication/treatment at home. They are having difficulty paying for Mr. Xoan’s treatment though. His medications are covered by insurance but when he goes to the hospital, he has to spend money on food, transportation, etc. and it ends up costing 3M VND per month for Mr. Xoan and Trung. The doctor recommends that he stay at the hospital for 2 months but they are unable to afford it. Notably though, both parents were really thankful to Trung for being so strong and helping his brother and his father throughout everything.

On a more positive note, the buffalo is pregnant again and they are hopeful although no one really mentioned what the plans are for it. It was not the most appropriate time to be discussing future plans. Ngoc imagines they may want to sell the calf or the mature female buffalo depending on the market price and their need. It’s unclear for now (a buffalo’s gestation period is long – 9 to 10 months – so there is plenty of time).