Molly's War
by Lynn H.W. Banowsky, M.D.
Lynn H.W. Banowsky, M.D.
Dr. Banowsky was the primary driving force behind the founding of the Texas Transplantation Society and served as its first president in 1987.
He graduated from high school in Stephenville, Texas in 1955 and received his undergraduate degree from the University of Texas, Austin. He trained at the Tulane University School of Medicine in New Orleans, completing a residency at the VA Hospital and the Charity Hospital there. Dr. Banowsky completed a urology residency at Tulane University and taught there before moving to the University of New Mexico School of Medicine, where he established the renal transplant program and was a member of the team who did the first kidney transplant in the state. He moved to the Cleveland Clinic, where he was chief of the section of renal transplantation. He returned to Texas in 1977 to become the director of the renal transplant program at the UT Health Science Center. In 1983 he established the Renal Transplant Program at what is now the Methodist Specialty and Transplant hospital in San Antonio, and was named surgeon emeritus of the Texas Transplant Institute when he retired. Dr. Banowsky participated in many committee and community activities, and is a past recipient of the Kathryn Dial Murray Gift of Life Award from the National Kidney Foundation. Since retirement, Dr. Banowsky has published memoirs of his childhood and experiences from his medical career in Amarillo Bay ("The Penalty of Success," November 2009); in Quirk: the Literary Journal of the University of the Incarnate Word and the Palo Alto Review. He resides in Lawton, Oklahoma, with his wife, Tonya L. Riley-Banowsky. He enjoys fly fishing, the outdoors, and their rottweiler named Baby. He can be contacted at lynn.banowsky@gmail.com.
The eleven-year-old girl standing in front of me had chalky skin with arms and legs so frail and spindly they were like sticks. Her round eyes were downcast and expressionless. The only incompatibility in her sad, spiritless appearance was a brilliant shock of long, unkempt red hair. More striking than her poignant appearance was her pungent aroma. She carried with her the ammoniac, acrid smell of urine. She had smelled of urine every day of her life.
Her name was Molly, and it was her first visit to our kidney transplant clinic.
In a room with me, a nurse, and her mother, she gravitated to none of the adults for comfort or security, but stood alone in the middle of the room.
Molly's problem began approximately four weeks after she was conceived. She was only 4-5 millimeters in length, about the size of a grain of rice, and for reasons unknown, nature made a mistake.
There was a glitch in the formation of her urinary and reproductive organs. Normally, the ureters (tubes that transport urine away from the kidneys) insert into the bladder. In Molly's case, the left ureter lost its sense of direction. The blunder was a small one, and at birth, the distance was only a matter of inches. But this bad navigation caused the left ureter to miss its normal destination—the bladder—and come to rest in Molly's rudimentary vagina.
The impact of nature's slip was enormous. Urine from the right kidney drained into a reservoir (the bladder) to await expulsion at periodic intervals. But during those intervals when Molly should have been dry, there was a constant drip, drip, drip of urine into her vagina. From the vagina, the urine drained to the outside. From the time Molly exited her mother's womb, the possibility of toilet training was impossible. She was constantly wet with urine from her left kidney.
The skin around her vaginal opening and her upper thighs developed amoniacal dermatitis (diaper rash) that never went away. Molly was physically uncomfortable and socially unacceptable. At first, her family thought she would outgrow this smelly problem. When she didn't, they thought she was lazy or stubborn. As Molly became more withdrawn and quiet, her parents assumed she was developmentally challenged.
Paradoxically, Molly's world shrank as she got older. Her parents were staunch Catholics, but she did not attend Mass with the family. She smelled bad. It was embarrassing for her parents and Molly.
She stayed home.
Children in the neighborhood didn't play with Molly. She smelled bad. They teased and taunted her with gestures and cruel words; the awful ammunition children fire at the weak among them.
Molly played alone.
Molly's parents enrolled her in kindergarten. The school called her mother. Message: Your daughter smells bad and distracts the other children. Please take her home and clean her up.
Molly was never sent back to school.
Molly became increasingly reclusive and non-verbal. She lived alone in her world of burning and itching thighs, her panties stuffed with old rags or socks in a futile attempt to keep dry, and with the constant smell of urine.
That no one sought help for Molly from a social worker, nurse or physician seems incredible. But Molly's parents were consumed with the day-to-day struggle of providing shelter, food and clothes for themselves, Molly and her seven siblings. Neither parent graduated from high school. Molly's father was as an unskilled construction worker. His wages were low and the work sporadic. To maximize employment, he was forced to follow work across the country. Frequently, he was away from home for months.
With eight children, not enough money, an absent husband, no health insurance and a child she considered an embarrassment, Molly's mother was overmatched by the problems confronting her. She was not only totally unaware of the social services available to help her, but she was also from the Appalachian culture of "We don't take charity."
Molly's family also belonged to a broader culture—the culture of poverty that crosses the boundaries of age, gender, skin color and religion. A culture, whose children, too often, carry the stigma of neglect and poor health care.
Molly's lifelong enemy, Nature, picked a perverse way to free her from her brutal world. At age 11, Molly had a grand mal seizure. A neighbor drove Molly and her mother to the emergency room of the hospital in her small town.
It was Molly's first visit to a doctor since her birth.
After a few basic laboratory tests and an abdominal sonogram, the cause of Molly's seizures was obvious. She had kidney failure. Molly's left kidney was obstructed because the ureter's opening into the vagina was too small. As frequently happens, one anomaly of the urinary tract is accompanied by another. Her right kidney was blocked as well. Both had been compromised since birth, and the damage was irreversible. If detected early, both strictures were surgically correctable. Molly's kidney failure and the years of urinary incontinence could and should have been prevented.
For most 11-year-old children, the diagnosis of kidney failure and the need for long-term dialysis or kidney transplantation would have been a shattering reality. For Molly, it would be the first step in an exciting journey to normalcy.
When Molly's acute medical problems were stabilized, she and her mother became aware of a world in which dozens of people and agencies were available to help her. Financial and logistical problems that initially seemed to preclude Molly's complex medical treatments evaporated.
The medical social worker told Molly's mother the child's medical care would be paid for by Medicare under the End-Stage-Renal-Disease Act of 1972. This was not an act of charity, but a program open to all patients with irreversible kidney failure.
Molly's mother did not drive, and the father had their only car. For patients like Molly, the dialysis unit had an old van that provided transportation for dialysis treatments and the numerous doctor appointments.
With dialysis, Molly felt better, had more energy and thought more clearly. For 4 to 6 hours three days a week, Molly was surrounded by people who cared for her, talked with her, didn't tease her and arranged for her to begin her education.
For the first time, the sky above Molly was blue and filled with contrails of hope.
Molly was told she would need an operation to remove her diseased, infected kidneys. She also learned that although the operation would hurt, afterward she would be dry and lose the smell of urine. She welcomed the surgery.
The operation to remove her diseased kidneys was free of complications and was followed approximately one year later by a cadaver kidney transplant. For the first time, all of Molly's urine drained into her bladder. Her bladder was normal enough to allow expulsion of urine and total urinary continence. Molly had a new lease on life.
During the pre-transplant evaluation, the removal of Molly's diseased kidneys and the transplant operation, I never met Molly's father.
Molly did not squander her new opportunities. She entered public school and by hard work, tutoring and summer school, made-up for the educational ground lost during her first 11 years. She was on track to graduate from high school shortly before her nineteenth birthday.
Molly's social development lagged behind her academic progress. The shyness caused by years of teasing and being told she smelled bad was a legacy difficult to overcome. Her shyness evolved from painful to demure. Molly's friends were few. There was no boy friend, no election to student council, no votes for class favorite or try-outs for cheerleader for Molly.
Her life consisted of studying and an after-school job. Molly and an older brother saved enough money from their jobs to buy an old car. The mobility provided by the automobile gave Molly independence she had never enjoyed. No longer was she dependent on the dialysis unit's old van for transportation to doctor appointments. No longer was it necessary for Molly to hitch a ride to or from work.
Molly had shed most of the troubles of her past, but not her loneliness. She accepted this circumstance with a fatalism tinged with appreciation for the many positive changes that had occurred in her life
By any measurement, Molly's medical condition was excellent. She had had no episodes of rejection and enjoyed normal function of her transplanted kidney. Her short stature caused by years of poor kidney function was improved by a post-transplant growth spurt. Socially, there is a tremendous difference in a young woman 4 feet 4 inches in height compared to a young woman 4 feet 11 inches—Molly's final height.
She was an excellent patient, always taking her anti-rejection medications and keeping clinic appointments. Molly's courage, resilience and spectacular improvement made her one of the transplant staff's favorite patients. In spite of losing all her early battles against disease, her parents' apathy and social unacceptability, she seemed to have won the last battle and the war. Her job and the prospect of a high school diploma also had poverty retreating.
Molly's courage and tenacity appeared to have triumphed.
During one of Molly's clinic visits her senior year of high school, the nurse stopped me before I entered the exam room and whispered, "Molly has a boyfriend."
If life were fair, there would definitely be a rule preventing people from being subjected to recurrent tragedies. The first 11 years of Molly's life should have been a vaccine providing her lifetime immunity.
It wasn't.
Her immunity didn't even last until she graduated from high school. The war we thought Molly won turned out to be only a temporary cease fire. During her eighteenth year, new battle lines were drawn.
# # #
Less than six months after the "Molly has a boyfriend" clinic visit, Molly called and told me she needed a clinic visit now—today, if possible. I asked why? Molly believed she had cancer.
Less than three hours passed from Molly's call until she and her mother arrived at the clinic. Molly asked her mother to wait in the lobby until after I examined her.
Molly told me that approximately one month after her last clinic visit, she noticed a swelling in her lower abdomen. As the weeks passed, the swelling grew larger. My examination confirmed the presence of a medium sized mass in her lower abdomen.
"Molly, when was your last period?" I asked.
Molly looked at me with her big eyes. "I don't remember. And anyway, why does that matter? You told me one of the complications of my immunosuppressive drugs was that I could get cancer, right? I must have cancer."
"Molly, before we speculate on this mass, I'm sending you to radiology for an abdominal sonogram."
As Molly entered the lobby, I heard her say to her mother. "He thinks I have cancer."
When Molly and her mother were in the Radiology Department, I headed to the break room. I was joined by the nurse who had told me about Molly's boyfriend. She said, "Do you think she's pregnant?"
"Yes," I said.
The nurse continued. "When she told me about the boyfriend, I had a 'birds and the bees' talk with her. She told me she and the boy touched each other, but stopped short of intercourse. When I pressed her about having intercourse, she freaked out. No, no that's a sin. We're not married. I mentioned birth control, and Molly went on and on about birth control being a sin. She said her parents would kill her if she had sex, especially her father, and if she had sex she would have to tell the priest and she couldn't even imagine doing that. I also told her pregnancy could damage her new kidney and could cause her to lose it."
"How did the conversation end?" I asked.
"I told her she needed to have a conversation with you or her mother or go to Planned Parenthood. The girl said she couldn't do any of those things. Her parents; absolutely not. No Planned Parenthood where she lives. And she forbade me to tell you. She didn't want you to think she was a bad girl or that she wasn't taking care of her kidney."
Under ideal circumstances, the relationship between parents and a teenage daughter is a rat's nest of misunderstanding and mutual mistrust. I understood Molly's reluctance to talk about sex with her parents. Why should she trust parents who were willing to warehouse her at home to avoid embarrassment? Why trust parents willing to blame her for the urinary incontinence? How could Molly trust her parents with an issue so personal, so important and potentially so volatile?
I let Molly down, too.
I was so focused on improving her physical problems and having her normal, I forgot there were different problems created by being normal. There had been no attempt to proactively discuss teenage sexual desire and no discussions of avoiding pregnancy by several types of birth control.
Molly's behavior was understandable. Cursed by nature, ignored by her parents and taunted by other children for 11 years, her only consistent companions had been the acrid smell of ammonia and diaper rash. Now she had someone. Molly told the nurse her boyfriend was attentive and kind to her. The touching of each other felt good, too. Who could blame her for wanting both?
I received a phone call from the radiologist. "Your patient's mass is a 5 to 6 month viable baby boy."
When Molly and her mother returned to the clinic, I invited them into my office. Molly told her mother to wait in the lobby. In the office, I told Molly she was pregnant and was carrying a baby boy. Tears silently rolled down her cheeks. She asked me to tell her mother.
Her mother came in, and I asked her to be seated. As soon as she heard the news, the shrieking and wailing started. Loud and long, and some in what sounded like a foreign language. It could have been Gaelic.
Though garbled because of heavy breathing, tears and snot, there were phrases I could understand because they were repeated. "Your father will kill you." "Your father will kill the boy." "Your father will kill me." "You have sinned." "What are we going to do? How will we tell your father?"
Throughout her mother's hysterical outburst, Molly remained silent. Her eyes were sad again like the first time I saw her.
After 25 years of practicing medicine, I learned some situations are too explosive to be defused with words. But I tried to comfort Molly and her mother. Molly just shook her head, and nothing penetrated her mother's shield of fear and outrage.
After many minutes and a box of tissues, I suggested I speak to the father. "Nothing doing," said both Molly and her mother. He was out of town on a construction job in the Midwest and wouldn't return home until winter weather shut down the job.
I asked Molly if she would consider termination of her pregnancy.
"No. That would be a sin. I'll take good care of my baby, even if there's something wrong with him."
I told Molly I would schedule an appointment with an obstetrician specializing in high-risk pregnancies. I assured Molly I was on her side and so were the clinic staff. I asked her not to exclude us and to accept our help.
She did.
When the boyfriend was informed of Molly's pregnancy, he promptly asked her to marry him. That week, they were married at the courthouse, and the next week moved into a two-room apartment.
With the help of the obstetrician and with Molly following her advice to the last detail, the pregnancy was uneventful. She didn't lose her new kidney, and she delivered a full term, healthy, red-haired baby boy.
Her father returned home during the Christmas holidays to find he had a new grandson and a new son-in-law.
Molly's first transplant clinic visit after the birth of her child was a celebratory event for everyone. Her medical condition was unaffected by her pregnancy and delivery, and her kidney function was perfect. She had gained some weight, but we told her truthfully it looked good on her.
Of course, Molly brought her new baby and new husband with her. The baby was healthy and handsome. Her husband was two years older than Molly and seemed like a nice, responsible, young man. He had a full time job, and his love for Molly and his son was obvious.
Molly's eyes were no longer sad.
The entire transplant staff viewed this new little family as a triumph of Molly's indomitable spirit. With everything going so well, Molly's next clinic visit was scheduled for one year.
As Molly was leaving, I asked her in private how their relationship was with her father. Molly shrugged and replied that when her father drank he frequently showed up at their apartment to insult her and her husband. She didn't expect her father to behave any other way. Molly said it would work out.
The year flew by and before I knew it, Molly's name was on the list of clinic patients to be seen the next day. I looked forward to seeing her. I arrived for clinic early the next day hoping to see Molly and her child before her official visit. Molly and her little boy were there early and alone.
Her eyes were sad again. I sat down next to her and asked how things were.
She shook her head and said, "About as bad as things could be."
I immediately thought of her husband. That bastard left her. He deserved a good butt kicking. "What happened?" I asked.
Molly's father was a hard drinker. He never accepted her husband or their son. He told Molly she embarrassed the family, again. One night he showed up at their apartment drunk. Her dad insulted her husband and then started in on Molly. He reminded her of how she used to smell of urine and how she had gotten knocked up and how she kept embarrassing him.
When the father began his verbal assault on Molly, her husband left the room. He returned with a pistol just in time to hear the father say "knocked up" and an "embarrassment."
Molly's husband shot her father three times and killed him in their living room.
Molly's husband pleaded guilty, and because of the father's reputation as a drinker and local knowledge of Molly's neglect as a child, her husband was sentenced to five years for manslaughter.
Storybook endings occur, but not as often as they should.
Before my retirement, I saw Molly one last time. Her husband was out of jail. They had moved to another town, and he had a good job. Their healthy, red-haired son was in elementary school and was a good student. No one teased him.
Molly's smiled again, but with reservation. She knew her wars could flare up at any time.
What do you think? Please send us your comments, including the name of the work you are commenting on.