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2. Health Status and Health Changes
- Rutgers University Press
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28 Chapter 2 Health Status and Health Changes When conducting a research study, it is common for some participants to stand out as particularly dedicated to the project—faithfully returning phone calls and letters, informing the project staff when they move, and willing to be open about subjects that may be sensitive or painful. Sarah is one of those people. We learned a great deal from the two telephone and two in-person interviews we had with Sarah, and her story illustrates the struggles that some women face getting health care for a sick child after leaving TANF. Sarah is a thirty-two-year-old woman living in the Portland, Oregon, metropolitan area. Our first meeting was at her parents’ home in a gentrifying neighborhood known for its mixture of “yuppies” and longer-term, workingclass inhabitants. Sarah met us outside, and her large, stocky frame and proud, confident demeanor immediately conveyed that she was an individual to be reckoned with. Sarah directed us to a low, unpainted bench on the front porch, where we were blissfully protected from the July sun. We then began to get acquainted with this extraordinary woman’s life. Sarah was living in the basement of her parents’ home to save expenses and to have occasional babysitting assistance for her eight-year-old son, Jake. Before we undertook the “business” of the interview, it was clearly important to Sarah that we meet Jake and have an understanding of his situation. Sarah carefully and lovingly presented her son, who was lying on a blanket on the floor of his grandparents’ cramped living room. Due to the heat he wore nothing but a diaper. Jake’s pale white skin looked as though he had never been exposed to sunlight and he was surrounded by toys of all description. Though Health Status and Health Changes 29 he is the size of a normal child his age, Jake is in all other respects an infant due to a severe case of cerebral palsy and developmental delays that were likely caused by complications during pregnancy. Sarah had placenta previa, where the placenta tears from the uterus, so Jake was without proper oxygen and food when she was about six months pregnant. Sarah cares for her son’s significant medical needs by herself, in conjunction with his school. Jake’s father is not a part of his life. Sarah described her pregnancy and the birth of her son: We did an ultrasound the week before he was born, and the most they could see was that he was small in size and not a lot of amniotic fluid around him. If a child doesn’t have a lot of nourishment coming, they have a tendency to use their bladder because, even though it’s waste, you can reuse that. The amniotic fluid is the baby’s waste, so he was trying to hold onto that to try and reuse it, and that’s a sure sign of lack of food and lack of oxygen too. A week later we went in for another ultrasound and they could see the placenta was tearing, and so I had a cesarean done and they lost his heartbeat. So when he was born, he was basically not breathing. He was clinically dead for three minutes. They revived him because they figured he had potential. So the cerebral palsy came from when I was pregnant, and the rest of it kicked in because of the lack of oxygen when he was born. That’s where the seizures started because his brain would hemorrhage. Sarah went on to describe what life had been like for her since Jake’s birth. Because he is so deeply dependent on Sarah, all of her personal needs, desires, and aspirations take a back seat to his daily survival. Eight years later, what is her son Jake like? He’s eight years old. He doesn’t talk. He makes sounds, more or less to indicate what he needs. . . . He’s in a wheelchair because he doesn’t walk. So it’s basically like having a three-month-old child that cries whenever it needs anything, and as a mom you do the same thing any mother would. You go down a little checklist: you’ve just eaten, you’ve had your diaper changed, so it’s a matter of a guessing game of what he needs or wants. Sometimes you can see the frustration in his eyes because he can’t...