Bitten by the Moon

Anneke Paterson

2014 - Ongoing

El Salvador

"There is a saying used in El Salvador that is rooted in mysticism; when the birth of a child with a birth defect is observed, family and doctors will say, "mordido por la luna" - or bitten by the moon to explain the visible anomaly. In El Salvador, there is a significant population of people that will likely never be able to receive the surgical treatment they need for birth defects and other severe physical conditions alike. The barriers to access extend beyond income and socioeconomic standing -- often surgeons will refuse treatment because they lack the specialized skill, equipment, or adequate teams to take on specialized procedures. Many of those that are able to afford their surgeries are denied them anyway; surgeons face challenges within the government in seeking funding and advocating for better equipment. These factors deeply and detrimentally affect those that need specialized surgical care in their personal lives. Many that have a distinct physical deformity or affliction are nearly barred from their societies, and are ostracized if they are not able to contribute to society in the expected ways such as production and labor. They face extreme difficulty beyond their physicality and the emotional trauma that 'being different' implies-- many are forced to travel internationally to the States or to Europe to receive their treatments. They lose their jobs, leave behind family and must find financial support to enable them to travel and stay out of their home country for significant periods of time. Those that are able to find help within their country may not make the "priority list", meaning that although their condition may be severe, if they are stable, they must wait. My work illustrates the struggles behind this lack of service for the population of El Salvador and also brings to light the resilience in the people that must fight for necessary services. Many will fall through the cracks in a societal, governmental, and political system that is designed to serve only those that are healthy and "able-bodied". While there are many factors at play here, I have chosen to focus on the people of El Salvador and their stories in hopes of providing answers to the question - what is life like with a physical deformity where help does not exist?"

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  • "I have been like this for three years, without enjoying a meal. No water.
    What I most want is that they can rebuild me, I wish this for my children, they are still small.
    I mainly want to thank you for taking the time to come here I am very grateful to God and to you and I have many hopes that can help me. I need to recover to be for my children. I have visited the wonders that you do as they help people. They need it."
    San Salvador, El Salvador 2017.

  • Maritza is a domestic violence survivor. She was visiting her children's father when she was allegedly shot in the face by her ex-partner. She survived, but lost her jaw. She must use a trach to keep her airway open and a feeding tube for sustenance which she uses herself. She will need multiple procedures, extensive surgical teams, and ample time to reconstruct her jaw. There is not a single surgeon in her country of El Salvador that is able to help her -- they lack the qualified skill set, equipment and team to tackle such an extensive and severe case. She must await traveling to the U.S.
    San Salvador, El Salvador 2017.

  • An infant receives the final steps in his cleft palate procedure. Veracruz, México, 2014.

  • An international plastic surgery team passes through the hallways of a hospital. Veracruz, México. 2017.

  • An infant in the moment before the effects of anesthesia wear off. Her surgeon holds her delicately. Veracruz, México, 2014.

  • "I want to look normal and like everyone else."
    Miguel de Jesus suffered a sinus infection as an infant that cost him his entire nose and proper internal function. His mother sells 65 lbs of handmade tortillas a day to help cover the costs of his medical needs. Miguel is stable, so has yet to make the "priority list" for surgeons apart of international teams. He awaits the surgery that will give him the structure and function of a nose, as there is not a single surgeon in his home country will operate on him.
    San Salvador, El Salvador. 2017.

  • Angelica's parents prop her up in a homemade device that is meant to improve her muscle mass in hopes that one day she will crawl - or walk - on her own. Angelica has a facial cleft, a condition of which she likely would not have survived if it were not for the urgent effort to bring her to the States for a series of surgeries. Unfortunately, the shape of her cranium put exceptional pressure on her brain, likely impeding her development. She is nearly 4 years old and cannot crawl, talk, walk, eat, or dress herself without help from her dedicated parents.
    Usulután, El Salvador 2017.

  • Angelica is dressed by her mom in their home in Usulután, El Salvador. 2017.

  • Lourdes has Crouzon's syndrome. Although her mother is a practicing doctor of medicine, Lourdes is facing many barriers in seeking more surgeries to improve not only her appearance, but also her ability to breathe through her nose. She does not presently make the "priority list" for a craniofacial procedure, as she is in a stable condition. San Salvador, El Salvador. 2017.

  • Notes from Central Military Hospital, San Salvador, El Salvador, 2016.

  • A young man with Cruzon's Syndrome. He is losing his vision and suffers from debilitating headaches due to the tremendous pressure the shape of his cranium inflicts on his eyes. His need for surgery that will relieve his daily pain is critical, though no surgeon is able or willing to offer treatment in his country. San Salvador, El Salvador. 2017.

  • Emely draws in her home. Emely has Treacher Collins syndrome. She was fortunately able to receive a critically-needed surgery when an international team visited San Salvador. She was also able to receive a hearing aid device. She will need a new one every year or so. Santa Ana, El Salvador. 2017.

  • Central Military Hospital, San Salvador, El Salvador, 2016.

  • A young man rests while he awaits his procedure. Central Military Hospital, San Salvador, El Salvador, 2016.

  • A young girl with a facial cleft is examined by her surgeons just before her surgery. Central Military Hospital, San Salvador, El Salvador, 2016.

  • A young man that had received his final surgical procedure regarding his cleft lip this past year. He speaks of facing challenges within his community of being accepted. San Salvador, El Salvador, 2017.