I woke up this morning thinking of those in Vietnam again. This occurrence has been common since I have come home from my trip to Vietnam last October. This morning, it was one of the young girls I met at Tu Du hospital on my mind. When I first saw her that October afternoon, she had a smile a mile wide. Her eyes were full of light. She was missing one leg below the knee. I believe her other leg was malformed. She crossed it behind her while she walked on her knees along the hospital hallway floor. She seemed to be friends with a little boy who had a malformed face. She looked up at me smiling. I waved at her. She waved at me, and I took her picture. I was immediately, emotionally connected to her. It’s one of my favorite shots of my afternoon there. I refer to it often when I feel lonely in this fight for the acknowledgment of all children affected by Agent Orange.
Tu Du Hospital is a large women’s hospital in Ho Chi Minh City. In this bustling hospital is a floor devoted to caring for the Vietnamese child victims of Agent Orange. Most children here are Orphans but some children have parents that come and visit them. The parents cannot afford to care for them at home. Children live on this hospital floor, A.K.A. Peace Village, for their childhood. The day I was there, there were children here as young as a few months to as old as twenty six years old. When we arrived on the floor, we were asked to don white lab jackets and to cover our shoes with disposable booties. I was very excited to visit here because I knew I would see children like me.
Looking at the children in the hospital, there were a variety of physical deformities. What struck me was example after example of children with various limb loss due to birth defects. It seemed on this floor having both hands, all fingers, both arms, legs, feet and toes would place one in the minority. In the lower extremities, it was mostly below the knee like my own birth defect. Most of them had a part of their tibia which is the small bone in the back of the leg. It does not extend all the way for a full leg swing. I too have only a small “nub” of my tibia. These children’s limbs looked just like my own “Little Leg.” I accepted this easily when I saw the children on a hospital wing in Old Saigon, but now that I am home it cuts me like a knife.
My father told me that when he first saw me when I was born, my left leg was longer than it is now. He said it looked different when he saw me the second time after my birth. My mother didn't see me directly after my birth because they sedated her with strong medication. He had questioned if they had done surgery to remove part of my tibia. The doctors would not confirm they had done anything to me. When I was young, I was angry that there was a chance that doctors violated me and took more of my body away without permission, but now as an adult I understand why they did, if they did.
The tibia does not extend all the way so there is not a complete knee swing. A below the knee prosthetic will not work if there is a long tibia. An above the knee prosthesis will not work either because there is no room for the tibia. If doctors removed a long tibia from my leg they did me a favor. I am able to wear an above the knee prosthesis and still have my deformed knee. The children in Vietnam without surgery will have extreme difficulty walking with prosthetics. The chances they will have corrective surgery are low. Most likely, they will be wheelchair bound their whole life. This saddens me. I know the freedom I have is because of proper prosthetic care.
My parents were told that when I was 18 and done growing I should have a procedure to remove my malformed knee. The doctors thought I could have a better cosmetically fitting and more comfortable prosthetic. My parents left it up to me to decide. I decided not to have the surgery, mostly because I was uneducated as to how it would actually help me plus I was eighteen. At the edge of starting adulthood there was no time for a recovery period. Thankfully, today, I am able to be mobile despite my malformed knee. As for the children in Tu Du Hospital, they have many challenges.
I dream about bringing proper, current, prosthetic care to all the children without lower limbs who live in Tu Du, as well as in the country side. Care that could help children learn to be stable on their feet, walk, and then run. With proper care they could run away from being confined to a wheelchair, away from crawling on the floor, and away from yearning for the full life they deserve. I know the empowerment that comes from proper prosthetic care. There is not a day that goes by I do not depend on my artificial leg to enable me the freedom many take for granted. When my leg is not working correctly I am basically down for the count.
During my afternoon at Tu Du Hospital, I met Hoan, 24, and Loi, 26, both double lower extremity victims of limb loss. They are both young adults who have grown up in the hospital. Hoan wears two prosthetic limbs. Loi chooses not to wear artificial legs. Hoan’s prosthetics are very primitive. She is wearing the same style artificial leg that I wore as a young child. When I was little, my prosthesis was cast out of fiberglass. It had a single hinge knee with a foam foot and a strap that wrapped around my waist. It was cumbersome, painful and limiting.
Hoan is a very impressive young woman who has traveled to the United States to testify to the US Congress on behalf of herself and her peers living with the devastation of our government’s choice to spray 20 million gallons of Agent Orange in Southeast Asia. She is intelligent and determined to succeed in her university studies. She speaks English and has shown by traveling to the US and speaking out for the offspring victims of Agent Orange that she wants the world to know what has happened to the children of Vietnam.
When I think about Hoan as a young, Vietnamese woman, navigating the streets of Ho Chi Minh City it makes me cringe. The streets in Vietnam require getting on and off motorbikes, walking around on uneven, crowded sidewalks, and navigating the extremely busy intersections. She told me it is very difficult for her to get around and that she has fallen several times. She says it’s very hard to get up when she falls. I empathize with her. Imagine for a minute that you had two door hinges for knees. Wildly unpredictable stability is what she must contend with as well as the emotional difficulty that comes with having a disability in her culture.
Watching the younger children on the hospital floor walk on their knees up and down the hallway made me think back to my own childhood. When I didn’t have my leg on, I would walk in the same manner. In my mind, I noted how dirty their knees were because often times that’s how mine looked before getting in the bathtub. Seeing them move around this way shot me back to a time that I myself was in the hospital having tests on my kidneys.
It was the middle of the night, and I had gotten up out of bed to go to the restroom. I crawled to the restroom because my leg was out of reach and it would be faster to get there without it. On my way back, a nurse had come into my room to check on me. She saw me crawling on my knees out of the bathroom.
“Get off that floor now!” She yelled.
She startled me. I didn’t know she was there.
I stood up on my good leg and hopped towards my hospital bed.
Pissed off, I yelled.”I don’t have a leg!
She was as startled as me, and stammered, “I’m sorry, I didn’t know.”
I was thinking “Well maybe you should read your charts, lady!” I was around 12 years old.
It was surreal the way I felt jealous of the children on this hospital wing in HCMC. Even with all their challenges, the children at least had each other. They appeared, for the most part, to be happy. They didn't have to explain over and over what has happened to their bodies. There were others who looked physically similar to them. They didn't feel like an outcast to their peers. All these things I did not have growing up. I was overwhelmed with emotion watching the younger children interact with each other. When God gave me the greatest gift, my gift came in the form of a twelve year old Vietnamese boy.
I had noticed his picture while we were in a meeting with the Doctors of the floor. His left hand looked very similar to mine. Little did I know, his limb loss looked identical to mine. When I saw him, he was a smiling little boy in a wheelchair. He was missing his leg just like me and was pulling himself along in his wheelchair with his good leg. His fellow peers were helping him along. His hand looked almost identical to mine. We were both missing the same fingers. Our birth defects were so similar. It was actually comforting. I asked through our translator if I could take his picture. He agreed. I showed him my left hand and he showed me his.
I asked Hoan if this little boy wore an artificial leg. She translated to him and he nodded yes. I noticed the boy’s friend, who had lobster claw shaped hands and no legs, scurry off quickly. Moments later, he returned, this time holding his friend’s artificial leg for me to see! I laughed at the sight of this little boy’s enthusiasm to show me his friend’s leg.
A part of me healed in that moment. A wound that was left over from early childhood was relieved. Acceptance, companionship, and friendship surrounded me. I let my twelve year old self feel those very things the children gave easily to each other on this warm fall day in Vietnam. I was granted peace.
Today I understand deeply that I not only share birth defects with my American peers, but together we belong to a group of children who live on a hospital ward in Ho Chi Minh City, Vietnam. Agent Orange is a humankind problem, not a single group’s issue.
Of course, when I came home, the angrier I became. I am close to forty years old and have turned my challenges into a successful life, but these were young children who have been born with birth defects within the last several years. This has happened because dioxin is still in their environment. My father was a war veteran. He left Vietnam after his tour. These children’s families were just living in their environment when tragedy struck them. There are twenty eight hot spots in Vietnam where dioxin levels are still very high. I have read that there are over 2 million acres in Vietnam where vegetation still does not grow as a result of the use of herbicide. Like myself, my family, my American peers, and their families and others around the world, the Vietnamese innocent children do not deserve to carry the burden of the few who made the decision to spray Agent Orange. When will it stop?
When I came home, I learned more about the twelve year old boy who shared my same birth defects. He was orphaned at the hospital and his parents moved out of the country. No one knows where they are. What a striking difference from my own life in America. His peers are all he has.
Since my trip, I have had the opportunity to met other American Children of Male Vietnam Vets affected by birth defects of the hands, arms, and fingers. In America, we are fortunate not to be defined by our birth defects unless we allow it. We are victims of the decision to use Agent Orange in Southeast Asia, but we have not allowed our birth defects to define our lives. The children of Vietnam deserve the same.
ShareJen Loney (PA)- Born without Right arm
Ben Quick (AZ)- Born with missing fingers on his left hand
Tanya Mack, Born with severe hip dysplasia and currently fighting a rare form of cancer.