May 17, 2020 ⋅ 6:30 P.M. ⋅ Guadalupe Sandoval ⋅ Editor: Cate Shroedner
Microtia refers generally to the underdevelopment of the outer ear, which means that internal structures are usually intact, but sometimes hearing can be affected (For more information on microtia visit our resources page: https://www.speakoutforsurgery.org/resources-1 for a visual guide).
Usually, microtia is diagnosed and treated shortly after birth; however sometimes patients slip through the cracks or are late to their ingression into our healthcare system due to circumstances outside of their control. Delays in care can affect patients and their loved ones beyond symptomatic effects.
In Winter of 2019, Speak Out for Surgery conducted an interview with Jonathan and his family to learn about his experience living with untreated microtia, and the impact it has had on his family.
Jonathan and his family immigrated into this country from Guatemala. In Guatemala they struggled to access the care and resources that Jonathan needed in order to improve his hearing. His mother decided that they would have a better opportunity at quality health care in this country and made the brave choice to abandon the life they knew in hopes of accessing better care.
It is easy to feel alone in an unfamiliar country especially when you don’t know the English language, but Jonathan’s mother has managed to find a support group of mothers in similar situations to that of her family. “I am actually a representative for my community - we meet up on Thursdays and share resources. Other mommies and well, me, we look out for each other.” says Jonathan’s mom proudly.
Jonathan’s mother shared with us how the fear of being undocumented can delay a parent’s search for care and resources. She explained that it is one of their biggest concerns as primary caretakers for their families. “The first thing [the support group] says is ‘We are undocumented. We don’t have a piece of paper that advocates for our needs. That speaks for us.’” she says.
Jonathan’s mother is not alone in this fear and is not the only one who faces stigma in accessing basic health care needs. Out of the 3 million uninsured Californians, 59% are not covered due to immigration status [2].
When asked about how he felt about his microtia, Jonathan said he felt “Frustrated.” He responded, “I have struggled so much to hear some words just because I’m further away from my friends and peers. And then when I’m at school, I can't exactly write down what they [teachers] say.”
Jonathan loves to learn and is especially interested in mathematics and science. He is thankful for how understanding and patient his teachers are with him. “I love it,” he says. “I like how you have to use your full concentration to solve a really difficult math problem and I like how we get to learn the fundamentals of life in science class.”
Jonathan is also thankful for the new friends he has made in the United States. “In Guatemala,” he says “I struggled making friends because my ear was deformed... [Other kids] would look at me as if I was another race, as if I wasn’t from this world, as if I wasn’t human.”
“It has been difficult for me to make friends there,... I have had only five friends who have truly valued me...” Jonathan paused before he continued, “When I used to go to a group of children, they would turn me away: ‘Who’s that?’ or ‘What does he want here, get him out of here he’s not like us, he’s different.’ They have given me nicknames and I have had a hard time fitting in, but that doesn't bother me. I always ask God to look out for me and to one day allow me the opportunity I need so that I can fix my ear and hear better,” Jonathan says with a smile despite recalling these difficult moments.
Between all the rules and regulations in seeking surgical care through either insurance or nonprofit organizations, it is no surprise that the process has been so difficult for Jonathan and his family. Although they have found a supportive community they still struggle with reaching out for help due to not only financial barriers, but also language barriers and health care literacy.
As of right now, the team at Speak Out for Surgery has connected Jonathan to basic resources and hopes to soon connect him and his family with professionals who can give Jonathan the quality care he deserves. In helping Jonathan and his family navigate through these alternate routes, we hope that Jonathan will one day reach his dream of becoming a doctor.
We could use a doctor with Jonathan’s heart and passion in our healthcare system.
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About the Author
Guadalupe Sandoval is an undergraduate student at University of California - Los Angeles. She is Co-Director of the Media Activism Committee for SOS. She aspires to aid in the reduction of the gap in health care access across demographics.
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