Shriners

1. Shriners Camp Care-A-Lot and Shriners Hospital for Children Heather Kozabo James Morrow Nanci Palacios Kim Rojas Mayra Rodriguez

2. Health Issues Spina bifida - A congenital defect in which the spinal column is imperfectly closed so that part of the meninges or spinal cord protrudes, often resulting in hydrocephalus and other neurological disorders. Cerebral Palsy - A disorder usually caused by brain damage occurring at or before birth and marked by muscular impairment. Often accompanied by poor coordination, it sometimes involves speech and learning difficulties. Arthrogryposis - The permanent fixation of a joint in a contracted position.

3. The Importance of Spina Bifida in Public Health: Spina bifida is a birth defect that can happen to anyone. We don’t know the exact cause of spina bifida, but research has shown that if a woman takes 400 mcg of folic acid every day and before she becomes pregnant, she reduces her risk of having a baby with spina bifida or another neural tube defect by as much as 70%. The exact cause of the rest of the cases is unknown, but it is believed that genetics and environment may play a role. 

4. Spina Bifida • As a group we learned about Spina Bifida by attending Shriners Camp Care-A-Lot, which is a week long camp for younger Shriners patients with disabilities. We learned the most about Spina Bifida from the children who had the condition. The kids were very open to explaining to us about what Spina Bifida was, what happened during their surgeries, what a shunt is, and how they adapt, etc.

5. Spina Bifida • The effects of Spina Bifida are different for every person.  Up to 90 percent of children with the worst form of Spina Bifida have hydrocephalus (fluid on the brain) and must have  surgery to insert a “shunt” that helps drain the fluid—the shunt stays in place for the lifetime  of the person.  Other conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy and social and sexual issues. • Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life.  People with Spina Bifida have many special challenges because of their birth defect, but their condition does not define who they are.  People with Spina Bifida have careers, get married and have children just like people who don’t have Spina Bifida.

7. Cerebral Palsy • The Importance of Cerebral Palsy in Public Health: • Cerebral palsy is a term that describes a group of disorders that affect movement control. There is not one specific cause of cerebral palsy, however, it can be caused by injury to the brain before, during, or after birth. Cerebral palsy may be acquired after the birth of a child. This results from damage to the brain in the first months, or years of life. The injury may be a brain infection (bacterial meningitis, viral encephalitis) or head injury following an accident.The medical providers caring for the expectant mother and the fetus are responsible to assure that they provide adequate care during the pregnancy, during labor and delivery, and immediately after the delivery of the infant. Failing to do so can result in the doctors and nurses being held accountable for the outcome of the pregnancy.

9. Cerebral Palsy • At Camp Care-A-Lot we worked first hand with children who had cerebral palsy. We had the opportunity see the effects of this disorder such as speech problems, impaired mobility, muscle and nerve problems, and an inability to control movement and posture.

10. Cerebral Palsy • Cerebral palsy (CP) actually refers to a group of chronic disorders that involve degrees of brain damage that affect body control and movement. The term cerebral refers to the brain, while palsy describes a disorder that impairs the control of body movement. These disorders are not the result of muscles or nerves problems. Instead, they are due to impaired motor areas in the brain that disrupt its ability to control movement and posture. The condition typically appears within the first few years of life and it is not marked by regression (it does not get worse over time).

11. Arthrogryposis • The Importance of Arthrogryposis in Public Health: Research has shown that anything that prevents normal joint movement before birth can result in joint contractures. The joint itself may be normal. However, when a joint is not moved for a period of time, extra connective tissue tends to grow around it, fixing it in position. Lack of joint movement also means that tendons connecting to the joint are not stretched to their normal length; short tendons, in turn, make normal joint movement difficult. (This same kind of problem can develop after birth in joints that are immobilized for long periods of time in casts.)

12. Arthrogryposis • At Camp Care-A-Lot there was only one child who had this birth defect. This child taught us about the physical therapy, stretching exercises, and what his daily life is like to have this disorder.

14. Arthrogryposis • In general, there are four causes for limitation of joint movement before birth: • Muscles do not develop properly (atrophy). In most cases, the specific cause for muscular atrophy cannot be identified. Suspected causes include muscle diseases (for example, congenital muscular dystrophies), maternal fever during pregnancy, and viruses, which may damage cells that transmit nerve impulses to the muscles. • There is not sufficient room in the uterus for normal movement. For example, the mother may lack a normal amount of amniotic fluid, or have an abnormally shaped uterus. • Central nervous system and spinal cord are malformed. In these cases, a wide range of other conditions usually accompanies arthrogryposis. • Tendons, bones, joints or joint linings may develop abnormally. For example, tendons may not be connected to the proper place in a joint.

15. Summary • During our visit to Shiners hospital and Camp Care-A-Lot we learned about several types of birth defects but we also learned how to take steps to prevent or lessen the chance of having a child with a birth defect. We saw first hand how disorders can affect the child and the family as a whole.

16. Teens Making a Difference • Teens can make a difference by volunteering and becoming educated about public health and its variety of fields. Teens can also make a difference by informing others about what they learn, so that hopefully in the future there where be a lower percentage of birth defects. The best way that teens can make a difference is to be involved.

17. Making a Difference in the Future • We can make a difference in this area as future professionals in public health and other professions by getting involved now. In the future we can work for a children's hospital or become a pediatrician. We can also make a difference by teaching others what we learn and pass on all of the knowledge that we gain from studying public health issues.

18. Ackowledgments • Ellen Kent • Christian Reed • Christina Schreiber • Kristin Houseknecht • Beth Demas • Renee Savic • Shriners • Bob Robaus • Camp Care-A-Lot • USF Dean Peterson Associate Dean Liller