The Ups & Downs of Down Syndrome
Updated: Jun 6, 2020
April 9, 2019 ⋅ 12:00 P.M. ⋅ Guadalupe Sandoval⋅ Editor: Isita Tripathi
When we need a pen or pencil, most of can find it with minimal effort inside our homes. Food and water are usually near us in our kitchens. As a first world country, it is usually easy to access any tool or resource we might need in our everyday lives. It should be just as simple for everyone to access healthcare and health-related resources across the United States. Unfortunately, this is not the case for residents of the Eastern Coachella Valley in Southern California.
As a current resident, I often have to embark on three hour bus rides to hospitals and clinics. I grew up thinking that this was the norm, that it was just a part of life that every citizen had to endure. It wasn’t until high school that I learned we were one of the few areas in California that required the assistance of “Flying Doctors of America,” a nonprofit organization that usually reserves its resources for third-world countries.
Over the course of the years, a new clinic has been built, but it is still understaffed and under-equipped. With every passing day, I find it more and more apparent that many crucial resources are missing. As the oldest of six children, I have witnessed the neglect that our clinics experience, and the negative effect of this neglect on our community. But none of these effects were more prevalent than the ones that presented themselves when my youngest brother was born. Before my baby brother was born, we were eagerly waiting to welcome him into our family. During pregnancy, my mother developed placenta previa, a condition that displaces the placenta in front of the cervix and blocks the child from leaving the uterus. She was told that she would be required to have a C-section. And she would probably be bedridden for the majority of her pregnancy. As time went by and more complications arose, the doctors had to prematurely extract my brother six weeks before his due date. Not only was this my mother’s first C-section, but unlike my other brothers and sisters, my baby brother was born with Down Syndrome, a genetic condition caused when abnormal cell division results in an extra, full or partial, copy of chromosome 21. My parents were heartbroken, but still had hope that he could lead a fulfilling life. The hospital nurses overwhelmed them with information in English, a language they did not understand. And while my eldest brother, who was seventeen at the time, served as a translator, he had trouble conveying medical terms. Although most hospitals in our area have nurses that serve as translators, my little brother was born in the odd hours of the early morning, before anyone could be assigned to my parents.
After they ran some tests on my brother and observed him for a few days, the doctors sent him home with my parents. As the months passed, my mother continued to experience complications with my baby brother, none of which anyone had prepared her for. Since a child with Down Syndrome has delayed development and a weaker immune system, he could not breastfeed for the first few days. As a result, my mother’s breast milk dried up. Neither my mother nor the nurses had expected breastfeeding her baby with Down Syndrome to be any different than breastfeeding her other children. Within the first few weeks, he had turned blue at least three times and had been rushed to the hospital each time. It was so overwhelming that my mother cried every time she tried to feed him. The medical staff was unable to find a cause, but speculated that his inability to eat may have created breathing problems as well. With time, he eventually learned to eat, but new difficulties arose. He had unusually strong reactions to sudden sounds. They ran some tests but, once again, could not determine anything.
The local clinics ended up sending our family to the nearest children’s hospital, Loma Linda Children’s Hospital (LLCH), a two hour drive from our home in regular traffic. There they discovered that my baby brother had loss of hearing in both of his ears. Since LLCH is the closest hospital equipped with the tools necessary to help special needs kids like my brother, my parents make the long trek once a month to receive proper care. Although it is recommended that children with Down Syndrome have check-ups at least twice a month in their first year, they cannot afford the time and the money to go this often. Every trip requires missing work for the day, and planning meals and appropriate care for the rest of their four children. As seasonal farm workers, missing a day of work could mean being laid off for the rest of the crop season. Fortunately, my mother’s boss is understanding of her situation. His family had faced similar difficulties accessing the same hospital every month for his niece with Down Syndrome.
Families should not have to sacrifice the health of their children because nearby facilities are ill-equipped to help people lead healthy lives. If my brother’s hearing loss had been discovered earlier, he could have received hearing aids, or other services that would allow him to develop at a rate closer to that of a typically-developing child. He might even have had the chance to undergo early intervention ear-surgery. When a child has hearing difficulties, it is crucial that hearing aids are introduced within the first six months of birth. And while most babies receive this service far before the six month mark, my brother has only just had his ears molded for hearing aids at seventeen months old. There should not be such a large disparity in the type of care families receive within a country, much less across a state. My baby brother did not receive many opportunities due to the lack of adequate care and proper testing he received at birth. Hopefully, future babies and children in California with similar conditions acquire the developmental resources that my family has not been able to receive so far. But in the meantime, my family relies on resources only found outside the Eastern Coachella Valley. And until new policies that resolve these healthcare inequities are developed, other families in our region will continue to face these injustices.
About the Writer
Guadalupe Sandoval is the Writing Director for Speak Out for Surgery at University of California - Los Angeles.