Getting It Right for Children: Stories of Pediatric Care and Advocacy / Edition 1 available in Paperback
- Pub. Date:
- American Academy of Pediatrics
Getting it Right for Children is the story of one pediatrician, determined to make a difference in the lives of children. Getting it Right for Children is the story of one pediatrician, determined to make a difference in the lives of children. The book follows the physician as he witness’s inequities in the health care system, and involves the reader in his journey to enact legislation for better access to health care for children. Stephen Berman, MD, FAAP, is one pediatrician who made a difference and inspires others to do the same.
|Publisher:||American Academy of Pediatrics|
|Product dimensions:||6.00(w) x 8.90(h) x 0.70(d)|
About the Author
Stephen Berman, MD, FAAP, is a professor of pediatrics and public health at the University of Colorado School of Medicine. He is also director of the Center for Global Health at the University of Colorado School of Public Health and the Children's Hospital Colorado endowed chair in general pediatrics. Dr. Berman is a past president of the American Academy of Pediatrics.
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Getting It Right for Children
Stories of Pediatric Care and Advocacy
By Stephen Berman
American Academy of PediatricsCopyright © 2008 Stephen Berman, MD, FAAP
All rights reserved.
Pediatric Residency, Community Pediatrics, and C. Henry Kempe
Community pediatrics focuses on a population or community rather than an individual patient. It considers how the interactions of environmental and genetic factors result in diseases that can be prevented and treated by health services. Studies have shown that living in poverty has a powerful influence on becoming ill and receiving needed care. Bill Steiger, chairman of the Department of Community Medicine at Temple University School of Medicine in Philadelphia, helped me understand this approach. He suggested that I apply for a Student Health Organization Project during the summer of 1968 after finishing my first year in medical school. I was accepted in Colorado, which placed medical students in community-based clinics as well as antipoverty programs. I was assigned 2 days a week to the pediatric clinic in the Mariposa Health Station, one of the community health centers in the Denver Health and Hospitals Neighborhood Health Center program, and 3 days a week helping to plan for a new federally funded migrant health clinic called Salud Del Valle. The clinic was in Fort Lupton, an hour's drive north of Denver. The rural area around Fort Lupton was medically underserved, with only one elderly general practitioner in practice. While there was a community hospital in Brighton, only 15 minutes from Fort Lupton, there were no physicians who would care for uninsured patients. Because the hospital did not receive state funds to care for patients without insurance, most families who were poor had to travel to the Colorado General Hospital emergency department in Denver to get subsidized care. Establishing the clinic in Fort Lupton would mean that people living in the community would be able to get outpatient care in the new clinic regardless of income. The clinic doctors could join the medical staff at the Brighton community hospital and the clinic would negotiate with the hospital to pay for its hospitalized patients.
My role in Fort Lupton was to help establish a local board of directors. According to federal guidelines, the board had to broadly represent the community served by the clinic, including present and past migrant farm-workers. I conducted structured interviews with people in the community to get input about what services the clinic should provide and to identify respected leaders who should be invited to join the board of directors. Frank DeLeon, a settled migrant worker hired as a community outreach worker, accompanied me on these visits. Over the years many migrant families had settled out of the migrant stream to live permanently in this rural community. They worked intermittently or throughout the year on farms, ranches, cattle feed lots, and chicken, turkey, or hog farms. Most of these families were poor and had no health insurance. Migrant farmworkers came to this area of Colorado from Texas and Mexico every summer to harvest the sugar beet crop and work in the processing plants. Many of the families were Kickapoo Indians who wintered in Mexico and had joint citizenship in Mexico and the United States. These families were very distrustful of the police and any government program. They rarely carried documentation of their citizenship, so they were often thought to be undocumented workers who could be deported back to Mexico. One of the goals of the planning process was to identify leaders in the Kickapoo and settled-out migrant communities who could help in planning the clinic.
Frank and I became close friends. He even tried to teach me Spanish, or at least a few vulgar phrases. At the end of the day everyone working on the project met at a local bar to debrief and discuss the day's activities. After a few beers, the consejeros and consejeras (outreach workers) relaxed and told us about their lives traveling on the migrant stream picking sugar beets. They grew up living in shacks provided by the growers that lacked indoor plumbing and running water. When they had their own families, they took their children into the fields because there were no schools or child care programs. They shared their hopes of being able to give their children opportunities for better lives, opportunities their parents were never able to give them. Despite having such limited incomes, our Hispanic coworkers were exceedingly generous and proud. This Fort Lupton experience connected me directly to migrant families.
Frank would often invite me to his home for dinner. He and his family were excited about having a clinic that would not be controlled by the Anglo establishment and sugar beet growers. They embraced the chance to help form the board of directors and play a role in deciding what services should be provided and how the clinic building would be designed. The following year, 1969, Salud Del Valle opened in a trailer with a family physician, 2 nurses, a laboratory technician, and 3 administrative staff. While the beginning was quite modest, by 2005 Salud Del Valle would grow to include 14 clinics in 9 communities, with 30 physicians, 40 midlevel clinicians, and an annual budget of $30 million. Clearly the early planning efforts built a solid foundation for future growth and success.
Ironically I cared for a malnourished 10-month-old Kickapoo baby referred from the Salud Del Valle during my first intern inpatient rotation at Colorado General Hospital. Caring for children who are abused and neglected is one of the most difficult and frustrating aspects of pediatric training. The baby, whom I will call José, was emaciated with sticklike arms and legs and a slightly protruding abdomen. He appeared irritable but drank his bottle eagerly. There are 2 types of protein-energy malnutrition, marasmus and kwashiorkor. Marasmus, the most common form of malnutrition during infancy, is caused by a lack of calories and protein. Patients with marasmus appear emaciated, having lost more than 40% of their ideal or initial body weight. Their extremities appear sticklike because they have almost no fatty tissue under their skin. They also appear apathetic and irritable. Kwashiorkor is a much less frequent form of severe malnutrition that results from inadequate protein intake and is associated with peripheral edema due to a low level of albumin in the blood. Children suffering from kwashiorkor often don't want to feed and have thin, scarce, and discolored hair; dry and scaly skin; and an enlarged liver.
During my admission history, his 16-year-old mother was awkwardly feeding José a bottle with red juice rather than formula. His mother was dressed in tattered clothes splattered with dirt from the fields. She spoke very little English and appeared overwhelmed by the hospital. Using a nurse's aide as a Spanish translator, I said, "Your baby needs formula; he needs protein to grow. Juice isn't good enough; it doesn't have any protein."
His mother didn't respond.
Then I asked, "What type of juice are you giving your baby?"
Embarrassed, she looked at me without responding. I pointed to the bottle with the red juice and asked, "What are you feeding José, what is in the bottle?"
She replied in Spanish, "Ketchup mixed with water. I don't have money for milk or even fruit juice. I can't work in the fields and take care of him. His father left me. I know that José is cursed with mal ojo. Only a curandera can lift the curse, but I don't have enough money to pay the curandera."
While I didn't know how or why a baby became cursed with mal ojo, I knew this baby was starving to death because the mother, working in the fields to help produce sugar for America's children, didn't earn enough money to buy formula for her own baby. José seemed to best fit a diagnosis of marasmus because he was not edematous and still wanted to feed.
On the ward we started refeeding him a half-strength formula slowly and carefully to avoid problems that can occur when malnourished children are fed. Low blood sugar and low potassium can occur as the body readjusts to the sudden shift back to glucose as the predominant fuel source with increased insulin, and potassium shifts back into the cells as the acidosis corrects. These children may experience heart failure, which is related to fluid overload and a weakened heart. Except for developing some mild, transient diarrhea, José tolerated his feedings well without any complications. We monitored his potassium closely as well as signs of heart failure. He began to look better after the first week of refeeding and became more interactive. Every day he gained more weight. He achieved his 5-month developmental milestones by being able to sit and hold his neck in an upright position. He started to babble. His mother came to see him on Sundays because she went back to work in the fields picking beets. José became the favorite patient of the nursing staff. One of the nurses always carried or played with him. He thrived with the love and attention of the hospital staff.
After almost 3 weeks in the hospital, his mother and grandmother wanted him released. His mother told us that she now had enough money to pay the curandera, who could cure José's mal ojo. The family promised to return to the Salud Del Valle clinic every week for weight checks. We wanted to respect the customs of the Kickapoo. As long as our patient was fed and continued to thrive, we didn't think the visit to the curandera would cause any problems. We arranged for the family to get free formula from the county Women, Infants, and Children supplemental food program office.
Discharging the patient was not an easy decision. The young mother had not spent much time in the hospital with her baby. Several nurses also commented that she didn't like to hold and feed him. She did not appear emotionally connected or bonded to José. We discussed whether to refer the case to the county department of social services for possible foster placement. We were concerned that involving social services would not only alienate this family but also adversely affect the willingness of other Kickapoo migrant families to seek medial care for their children. The staff at Salud Del Valle told us that many Kickapoo families were already distrustful of the clinic. It was often difficult to get them to come to the clinic even when they were quite ill. What would happen if social services put the child in temporary or permanent foster care? What if the baby's mother wanted to leave with the other Kickapoo to travel to their next stop while the child was placed in foster care? We decided to discharge the patient home with close follow-up at the Salud clinic. We later learned from the staff at the Salud clinic that the family never returned to the clinic despite frequent visits to the family by outreach workers. A few weeks later the family moved on to their next work site. When the Kickapoo Indians passed through Colorado on their return to Mexico 3 months later, we learned that the baby had died.
We made a mistake in not reporting the case to the county department of social services. When I told the nurses what had happened, everyone started to cry. The baby had, in a way, become adopted by all of us, but especially the nurses. It was very hard to bring the baby back from near death, to see how he responded to attention and love, and then have to face the reality that we abandoned him to die.
I'm sure most Kickapoo mothers love their children and care for them well even under very trying and difficult circumstances. I'm also sure that some Kickapoo mothers fail to bond with their infants. This occurs in every society or community. Investigating child abuse cases involving neglect is always a difficult challenge. It is critical to distinguish between situations in which providing the family with free formula and educating the parents will solve the problem versus situations involving mothers who are emotionally incapable of caring for their child. Carrying out this assessment becomes even more difficult when the family has a different language and cultural background. This case raises the dilemma of how best to balance the effects of a clinical decision on an individual child with a possible effect on the larger community. We felt that it was probably safe for the baby to return home with close follow-up. If the mother had not been a Kickapoo migrant, would we have placed him in foster care? Probably. Would removing the baby from his home have resulted in further isolation of the Kickapoo migrant community and distrust of the medical community? Possibly. While I understood the intellectual reasons for discharging the baby with his family, I began to appreciate that a pediatrician's primary responsibility is to the patient, but that it is also necessary to balance that responsibility with a broader community perspective. We face a difficult challenge when it is necessary to consider the possible effect of a decision on a community as well as an individual child. After this experience I considered the safety of the child my first priority. However, the line between consistency and rigidity is often not clear. Sometimes placing a child in foster care can have unintended consequences that ultimately harm the child and destroy your relationship with the family.
My feelings of guilt about José and my earlier work starting the Salud clinic gave me the passion to address the injustice experienced by migrant farmworkers in our country, especially their children. I have continued my involvement in clinical activities and policy issues related to providing care to migrant and undocumented foreign national children throughout my entire career (appendices B and C).
During my first ward rotation I had many clinical interactions with C. Henry Kempe, the chairman of the pediatrics department at Colorado General Hospital. He coined the term "the battered-child syndrome" and was one of the first US pediatricians to describe child abuse in a landmark journal article and subsequent book on the subject. He became my pediatric role model and mentor. Dr Kempe was a slender, short man who only wore bow ties. He had a receding hairline with thin gray hair and thick dark-framed glasses. He spoke in short crisp phrases that contained the hint of a German accent because he was born in Breslau, Germany, and came to the United States in the 1930s. He was an internationally recognized expert in viral diseases and had played an important role in the eradication of smallpox in India. Later he spearheaded efforts to discontinue routine smallpox vaccination because the frequency of serious complications associated with the vaccine was higher than the likelihood of contracting the disease.
Dr Kempe was an excellent teacher and I was fortunate to have him as an infectious disease consultant during my first inpatient rotation at Colorado General Hospital. He consulted on several of my patients, including an 8-month-old baby with pertussis or whooping cough. He told me the patient had pertussis before we got the culture results that confirmed the diagnosis. I presented this patient at morning case report. The residents and faculty met every morning to hear about interesting cases and discuss their management. The chief resident would select the cases from patients who were hospitalized at the time. The first-year resident caring for the patient was responsible for making the initial presentation without any written notes or reading from the chart. This presentation included a review of the patient's initial symptoms, the findings identified on the physical examination, and the results of the laboratory tests or radiographs. Dr Kempe always sat in the first row of the conference room next to the other senior members of the faculty. The junior faculty members would be scattered throughout the conference room.
Dr Kempe always liked the resident to bring the patient with the parents into the conference room so that he could interview them and demonstrate some aspect of the case. He left the room with me to get my patient because he also knew the mother. Just before we reentered the conference room, he told the mother he wanted to check something in her baby's throat and quickly used a tongue blade to exam the tonsils. The infant immediately started to cough and whoop. He quickly escorted mother and baby into the conference room so that everyone heard the whooping cough. Everyone was quite impressed with the cough. Several residents commented that it was incredible that the infant happened to have a coughing spell during the morning presentation. The chief resident then led a discussion of the differential diagnosis for the presenting symptoms and the management of the patient. Different faculty asked me questions about the history or physical examination or made comments about the case. After the conference Dr Kempe took me aside to stress the importance of demonstrating the whoop so everyone would remember how to diagnose pertussis. Dr Kempe stressed that pediatricians have a responsibility to individual patients and the broader community for immunizations. My commitment to work to ensure that all children are fully immunized started with that first case presentation and my interactions with Henry Kempe.
Excerpted from Getting It Right for Children by Stephen Berman. Copyright © 2008 Stephen Berman, MD, FAAP. Excerpted by permission of American Academy of Pediatrics.
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Table of Contents
AcknowledgmentsForewordIntroduction Chapter 1 Pediatric Residency, Community Pediatrics, and C. Henry Kempe Chapter 2 International Health in Cali, Colombia Chapter 3 Junior Faculty Years: Learning to Make Difficult Clinical Decisions Chapter 4 The World Health Organization Case Management of Pneumonia and Acute Respiratory Infections Chapter 5 Children With Complex Medical Conditions Chapter 6 Medicaid, the Colorado Medically Indigent Program, and the Colorado Child Health Plan Chapter 7 Epidermolysis Bullosa: A Devastating Condition Chapter 8 Child Advocacy, Health Policy, and the Presidency of the American Academy of Pediatrics Chapter 9 Immunization Policy Chapter 10 The Quest for Universal Health Coverage Chapter 11 Child Survival in the Developing World Chapter 12 ReflectionsAppendicesReferencesBiographyIndex