SISTER HILARY ROSS AND CARVILLE

 Her Thirty-Seven Years Struggle Against Hansen's Disease

Part I

Cynthia M Gould*

*Thesis submitted in canidacy for Master's degree, Departnent of History, University of New Orleans, LA

When the Daughters of Charity arrived at Carville, Louisiana in 1896, thirty-one patients with leprosy resided in dilapidated slave cabins at the Indian Camp Plantation located eighty miles from New Orleans.1 The victims of this dreaded disease lived in a prison-like environment; those who tried to escape were returned to Carville in handcuffs like common criminals.2 Any patient who dared to journey to the post office, located in the tiny hamlet of Carville two miles away, was brought back by guards and thrown into jail for leaving without permission. Only patients with medical discharges or special passes could leave the hospital premises. There were no telephones for patient use, and emergency long-distance calls to notify relatives of a surgical procedure or change in discharge plans prompted an escape to Baton Rouge through the "hole in the fence" which ripped through barbed wire surrounding the northern sector of the institution.3 This dismal scene lasted for nearly fifty years until the discovery of the sulfone drugs which rendered the disease noninfectious in 1941.

In the first two decades of the 1900s, the federal government concentrated its efforts to study leprosy in the Hawaiian Islands even though the most crucial advances in medical management evolved at Carville under the Public Health Service Administration decades later.4 Surgeon General Wyman petitioned Congress for funds to begin scientific research in Hawaii in 1905, and four years later the United States Leprosy Investigation Center on the Island of Molokai opened under the directorship of Dr. Brinckerhoff, a pathologist from Harvard University. This research laboratory closed in 1913, but the Public Health Service continued to staff investigative and patient care facilities in Honolulu, even though these scientists found no definitive cure for the disease.5

In contrast, Louisiana and Massachusetts relied on tenuous state support as the patient census increased during the early twentieth century. Dr. Isadore Dyer, President of the Board of Control of the Louisiana Leper Home, implored the legislature for funds to create a suitable residence for those afflicted with the illness.6 The Indian Camp Plantation sufficed as a temporary solution for housing needs and calmed the mounting hysteria of the local communities. Meanwhile, cases of leprosy also appeared in the Boston area, but like the South, Massachusetts desperately needed a quarantine hospital to isolate its victims. The Boston State Board of Charity requisitioned funds from the legislature to purchase Penikese Hospital, located on the eastern border of Buzzarad's Bay, Massachusetts, after the federal government denied the state's request for the establishment of a national leprosarium.7 Not until the 1930s did the federal government fund research at Carville where unprecedented discoveries in the management of leprosy were made in the 1940s.

Of the scores of missionary and medical personnel who labored to eradicate the bacterium and the social stigma of leprosy, or Hansen's disease,8 one stands out as an exemplary figure, Sister Hilary Ross. For thirty-seven years this remarkable nun worked to eliminate the ignorance and misunderstanding at Carville through her humanity and compassion for patients, her role in the pharmacy and laboratory research during the sulfone era, and her contributions to professional organizations on both local and international levels. Although extensive literature exists on Hansen's disease, only newspaper clippings, scientific journal articles,9 and short personal accounts of her life pay tribute to this great Daughter of Charity. Much of the evidnece in this paper, therefore, consists of oral intervals with contemporaries who recalled many details of her work and achievements.

Born on October 6, 1893 and named Mary Ellen Ross by her Scandinavian immigrant parents, the future Sister Hilary was the second of seven children. She grew up in Berkeley and San Francisco. Mary Ellen's religious interests began as an adolescent, quite to the disapproval of her devout Lutheran mother .10 A zealous Catholic lady, Amelie Mathe, worked with Mary Ellen at the D Samuels Lace House, a clothing store in San Francisco, and encouraged the young girl to attend mass and pursue a religious vocation in spite of her mother's objection. While attending mass in Berkeley, Mary Ellen experienced, what she called a "miracle of guidance," prior to her conversion, causing her to see a cornette of the Daughters of Charity within the communion host, directing her to this particular religious community. Freed from the anxiety over which religious order to choose, Mary Ellen Ross soon entered the religious community and began her professional education as Sister Hilary Ross .11

Sister Hilary's educational background covered many medical areas. While studying nursing, she underwent surgery for an opaque area around the ear which appeared on x-ray and evoked medical concern. This operation caused a marked facial nerve paralysis and her superiors removed her from the nursing curriculumm.12 Thereafter, she studied pharmacy under the guidance of Sister Alphonsa Porter and enrolled in academic courses at the University of Wisconsin from 1919-1921. Because Carville needed a pharmacist in 1922, she attended classes at Charity Hospital in New Orleans for 10 months and passed her State Board Examinations at Tulane University, which awarded her certification in pharmacy.13

Later the medical staff needed a laboratory technician and made arrangements for Sister Hilary's additional education in the field of medical technology. A pathologist travelled from nearby Baton Rouge to teach her; she even enrolled in laboratory courses in St Louis, Missouri from 1927-192914. This educational background supplemented her Bachelor of Science degree, which she earned from Louisiana State University in 1937. Ultimately, Sister Hilary served her remaining years at Carville as a research biochemist (1930-1960) and director of the laboratory where she had devoted many hours to research on a disease that perplexed physicians and successfully invaded every part of the body.15

Hansen's disease is an infectious condition caused by the bacterium Mycobacterium leprae, isolated by a Norwegian scientist, Dr Gerhard Armauer Hansen, in 1873. Typically, Hansen's disease consists of three types: lepromatous, tuberculoid, and dimorphous or borderline forms. The lepromatous type, predominant at Carville, affects the skin first and the major nerves later. The tuberculoid type, predominant in Africa and Asia, exhibits less significant skin lesions, but invades and destroys the peripheral nerves of the arms and legs. Sensory loss occur in both forms. Under the microscope, the dimorphous form resembles both lepromatous and tuberculoid types and could develop into either form during the course of the disease.16

Complications which arose in untreated Hansen's disease impede the patient's daily functions and physical appearance. Eye involvement could cause blindness while loss of muscle control resulted in "claw hand" and paralysis of the upper and lower limbs. Painful sensations which normally served as a protective device against injury no longer function, and the body could incur infection and gangrene without feeling the pain.17 In addition to the physical destruction that the body endures, the social repercussion of Hansen's disease before sulfone therapy proved equally devastating.

When Sister Hilary arrived at Carville in 1922, deep-seated social prejudices, based upon the Bible, still existed as they had for centuries. The confusion of modern leprosy, known as Hansen's disease, with biblical leprosy resulted in humiliation for those afflicted with either disease throughout history. This erroneous association resulted from the transliteration of the Hebrew word Tsraath, meaning "unclean", into the Greek term lepra which collectively included various dermatologic skin disorder. Such scaling skin conditions as psoriasis or leukoderma18 were designated as leprosy without clinical confirmation. Subsequently, the Greek Septuagint translation passed into the Vulgate and other Bible transliteration, perpetuating the odious stigma associated with the disease.19 Historically, patients endured such rituals as the Leper Mass, performed during the Middle Ages, which officially designated the victim as "dead." The outcasts wore distinctive clothing with bells or clappers to distinguish themselves from healthy citizens and to warn them of their "infectious" nature.20

The isolation and separate living quarters required in antiquity remained unchallenged even during the early twentieth century. As one Carville patient exclaimed, "If you spell leper backwards you get the word "repel," which clearly indicates the patients' awareness of their own repulsiveness to the world "outside of Carville".20

Similarly, misinformation about the communicability of Hansen's disease still evoked collective hysteria during Carville's early administration by the United States Public Health Service (1921-present) as it had during the days of the Louisiana Leper Home (1894-1921). Healthy individuals feared infection through casual contact and exposure during daily routines; clearly, people were ignorant of the facts or failed to accept the medical claim that ninety percent of the population possessed natural immunity to the disease.22 In 1901 people reacted violently when attempts were initiated by the Leper Control Board to open a leprosarium at the Elkhorn Plantation in Jefferson Parish. Armed with torches and kerosene, mobs burned the building to the ground in adamant protest against the opening of such a facility within New Orleans's city limits.23

Prior to the introduction of the sulfone drugs in the 1940s, "inmates" at Carville lacked civil liberties and acquired classification with such infectious Asiatic diseases as bubonic plague, smallpox, and yellow fever. Barbed wire surrounded their hospital dwelling and segregated the residents from the outside. Although Hansen's disease was less contagious than a common cold , and significantly less infectious than tuberculosis, individuals stigmatized with the disease could not use public trains or buses. Unwritten law forbade marriages at Carville and patients were denied the right to vote. Only those patients living in the states of Louisiana, Texas, and Mississippi could visit their families; those who resided in other states could not leave at all. Patients assumed "alias" names to prevent negative repercussions for their families still living in the outside communities.24 Sociologically patients carried an "invisible" hand bell that precipitated salient, demoralizing restraints upon their lifestyles.

Confronted with these adversities, Sister Hilary fought against these prejudices by sharing her knowledge on Hansen's disease and treating the patients with compassion and understanding. Patients frequently came to visit her in the second-floor laboratory where she explained pertinent diagnostic tests to them and boosted their morale. Energetic and enthusiastic in nature, the stout, spectacle-wearing Sister, who stood approximately 5'6" tall, spoke loudly and often grabbed the individual by the arm during conversation.25

Because discharge from Carville during pre-sulfone days required twelve bacteriologically negative exams, performed on a monthly basis, the patient often faced the demoralization of beginning over if the twelfth exam returned positive. When Stanley Stein, founder of the Carville Star publication, received the shattering news that his twelfth bacteriological exam was positive, Sister Hilary ran to his aid. Trying to persuade the Clinical Director, Dr Wolcott, to change his medical opinion, Sister Hilary reviewed Stanley's skin slide and argued that the microorganisms were fragmented and broken bacilli, indicating that the bacilli could have been dead. Unfortunately, her efforts proved futile and Dr Wolcott denied Stanley's discharge.26

Sister Francis de Sales Provancher remembered that her friend and fellow Daughter of Charity had her own adversities to conquer, thus making her more empathetic with the patients. Sister Hilary's facial paralysis and ever-present headaches acquainted her with the pain that patients with Hansen's disease endure on a daily basis. After Sister Hilary retired from an early supper, the younger Sisters brought her icepacks to alleviate the pain. Sister Frances took this opportunity to chat with her about activities within the religious community. Sister Hilary's facial paralysis, which later went unnoticed unless she smiled or laughed, caused her no embarrassment, but helped her realize how the disfigured patients felt when scrutinized by the public.27

In the area of medical management, all attempts to arrest the Hansen's bacillus failed prior to 1941. Treatments given under the Louisiana Leper Home administration (1894-1921) employed numerous medicinal concoctions, some of which continued to be used when the Public Health Service assumed control of the hospital administration in 1921.28 One of the most popular treatments, chaulmoogra oil, was taken from the tree of the hydnocarpus genus, but claimed its medicinal value from Far Eastern folklore. The legend stated that an ancient Burmese prince, after contracting leprosy, cured himself by eating the fruit of the chaulmoogra tree. According to written record the British Civil Surgeon Dr F J Mourat pioneered the drug in West India in 1853, paving the way for its testing and administration around the turn of the century.29 Patients ritually ingested the medication, available in oral or injectable form, at meal times to combat nausea. Unfortunatly, chaulmoogra oil injection inflicted pain and caused suppurative abscesses which occasionally required hospitalization.30 The medical profession viewed the oil as useless, but it offered the patients an exercise in which they could make some attempts, even if futile, to alleviate their misery.

An alternative to the Chaulmoogra oil, the Florida-grown mangrove bark, helped relieve the nausea associated with the chaulmoogra oil and was purported to be a specific for leprosy itself. Some workers used the bark as early as 1894 when the Leper Home first opened.31 In the 1920s Drs Denny and Hopkins discovered that patients who reacted severely to the smallpox vaccine also exhibited improvement. The physicians speculated that the body responded to the smallpox vaccine by producing more antibodies to fight infection, and subsequently reduced the chronic symptoms present in Hansen's disease.32 Patients volunteered for the vaccines and serum obtained from calves was also tried, but this form of management was abandoned. Dr Johansen sent volunteer patients to the Marine Hospital in New Orleans in the 1930s for experimental fever therapy after they had experienced high fevers. One group of patients went through twenty "fever sessions" over a period of eight months, enduring heat in temperature-regulated cabinets ranging from 140 to 155 degrees over a five hour period. The experiment raised the blood temperature to 105 degrees, causing cramps, nausea, vomiting, and delirium, but ultimately patients showed no improvement.33 In spite of these attempts and others, early medical management provided little scientific hope for those afflicted with Hansen's disease.

During Sister Hilary's assignment to the Carville pharmacy (1921-1928) she taught her coworkers the technique of preparing the chaulmoogra oil and instructed Sister Teresa Kelly, Sister Laura Stricker, and Otto Duhe the techniques and academics involved in medicinal preparation so that they passed their State Board Examinations in pharmacy.34 In a 1989 interview Sister Laura remembered her mentor as a very knowledgeable individual with a "no-nonsense" attitude who expected her students to be prepared. As a medical records technician, Sister Laura would finish her morning routines in the file room and then proceed to the pharmacy where Sister Hilary taught her medical preparation. The chaulmoogra oil was so nauseating, Sister Laura recalled, that "the patients would lose their lunch along the sidewalk." Although Sister Laura denied independent drug research by Sister Hilary during this time, such adverse reactions to the chaulmoogra oil prompted Sister Hilary to devise new techniques in preparing the oral medication.35

By making the medication more palatable and easier to administer, Sister Hilary hoped to reduce the discomfort that patients endured during treatment. Cocoa and flavored syrups were used in the attempt to disguise the taste of the chaulmoogra oil, but after testing fifty different preparations for their palatability, Sister Hilary abandoned these methods as futile.36 Next she filled gelatin capsules so that they resisted the gastric juices and dissolved in the intestines. Although this method achieved limited success, occasionally the medication was regurgitated into the stomach.

Intramuscular preparation of chaulmoogra oil imported from the Philippines proved costly, and Sister Hilary labored successfully to produce Carville's own preparations, which were then used until 1942 when the sulfones became the accepted treatment.37

The equipment and accommodations used by Sister Hilary lacked sophistication and space when she first arrived at the pharmacy in 1922. A small cottage built in 1906 not only provided a meager facility for the pharmacy, but also doubled as a doctor's office and operating room. Only a scale for weighing drugs, coupled with the work efforts of the pharmacy personnel were available for formulating medication during the pharmacy nascent years. In 1924 a growing patient population forced the completion of a new building project with a housing capacity for 425 patients. During this time the pharmacy was relocated in one of the vacant cottages. Installation of such new equipment as a twenty-five-pound electric mixer for making ointments, a double boiler for formulating disinfectants, and percolating jars for the removal of active ingredients from vegetable drugs made the job of the pharmacists easier. Sister Hilary's role as a pharmacist changed in 1928, however, when the laboratory needed a medical technician and sent her for additional training in that discipline.38

A pathologist from Our Lady of the Lake Hospital travelled from Baton Rouge to Carville once a week to give Sister Hilary instructions. The following year she attended Gradwhol's School of Laboratory Technic in St Louis for one month to learn blood chemistry determination. The Carville administration felt that with her training for pharmacy research, Sister Hilary was the best qualified to undertake her new task in the laboratory.39

Similar in construction to the crude pharmacy, the laboratory in 1929 also lacked space and sophisticated equipment. The patients' kitchen pantry served as the blood chemistry section, while wooden furniture provided a working area for general laboratory procedures and patient training purposes. To assist Sister Hilary in concentrating on blood chemistry determinations and research, patients learned the necessary skills to perform routine laboratory tests.

A patient, Betty Martin, recalled that Sister Hilary had direct charge over her, teaching her about Hansen's disease. Sister Hilary instructed her on how to make smears from the lesions and how to stain the tissue to determine if it was acid fast. (Hansen's bacillus, when stained, retains a pinkish tint, indicating a positive reaction known as acid-fast positive.") Next Betty learned to do routine urinalysis, blood counts,, Wassermann test for syphilis, and to examine sputum for tuberculosis, all under the direction of Sister Hilary.40 Two other patients, a physician, and a Chinese man known as "Monkey Boss," who supervised the care of the monkeys and animals in the laboratory, also assisted Sister Hilary in the laboratory work. Betty described her mentor, then in her thirties, as "an untiring, conscientious worker with a fine scientific mind, who loved the patients she served so well, and was always patient in explaining to them in layman's term any tests being made."41

Relieved from the routine laboratory duties by the patient staff, Sister Hilary explored more technical aspects of the disease. She investigated the biochemical elements of infected patients to help physicians establish therapeutic mangement and to satisfy her own inquisitive, academic mind.42 She questioned the blood changes which occured in Hansen's disease after the absorption of the digits in the hands and feet, a phenomenon commonly mistaken for the "finger and toes dropping off."43 After examining x-rays Sister Hilary concluded that no definite relationship existed between the bone changes and serum calcium and phosphorus which comprise the mineral content of the bones.44

The complex chemical alterations that occurred in the body with Hansen's disease motivated her to investigate the electrolytes45 and acid-base balance,46 and review current literature on the blood components in leprosy47 and the response to various drug therapy, including the sulfones. Since electrolytes are important in maintaining proper fluid volume, cardiac function, and acid-base balance in the body, careful monitoring and medical intervention of these patients could be required if their values were abnormal. Similarly, her work helped physicians manage patients with concurrent diseases such as kidney infections, diabetes, and blood infections.48 Sister Hilary's review of the blood in the patients proved instructive as a source of reference, especially in her review of the conclusions put forth by researchers in the area of morphology (shape of cells), chemistry, and immunology.49 Yet she made her most significant contributions in the era of the experimental sulfone drugs, inaugurated by Dr Guy Faget in 1941.