May 27, 2013

Ruby’s passing immediately preceded the announcement of the suit filed against South Carolina on behalf of the eight-year-old who was, like Ruby’s daughters, subjected to surgeries to “normalize” atypical sex anatomy, or what is known as an “intersex” body.  I believe she would have celebrated the news of the lawsuit by Advocates for Informed Choice and the Southern Poverty Law Center. I thank her daughters for allowing me to share this essay.

May 9, 2013

The woman I called “Ruby” died this week. Her experiences and example have been central in my thinking about the ethical problems raised by the medical management of children and young adults with atypical sex anatomies over the last fifteen years.

Ruby was the mother of two children born in the 1960s, each of whom went into adrenal crisis shortly after she brought them home from the hospital.  Both had been announced boys when they were born, and both were reassigned as girls after doctors came to understand they were genetic females with congenital adrenal hyperplasia (CAH).

Her daughters were born at a time when doctors had already made significant advances in the management of a condition for which there is no cure.  When, about a day after she was born, Ruby’s first child could no longer breastfeed and wouldn’t stop vomiting, they returned to the hospital, and a sharp pediatrician with training in endocrinology diagnosed CAH.  It was the telltale sign of what closer examination revealed to be atypical genitalia that helped the doctor see that the vomiting and dehydration could be linked to CAH. Without the universal newborn screening now in place, the cause of adrenal crisis in genetic males with CAH often went unrecognized at this time.  When Ruby’s younger daughter became sick the same way, Ruby insisted they go directly to the university hospital where her older child had been under care. Ruby’s daughters were administered the steroid hormones that their bodies could not produce, and each underwent a series of surgeries to “normalize” the appearance of their genitalia. Typical appearing sex anatomy of a girl with CAH, doctors believed, was just as important to her well-being as maintaining proper hormonal levels.

Ruby’s younger daughter introduced us almost fifteen years ago.  I was thinking about the vulnerability of parents of children with atypical sex anatomies, and I posted an unintentionally provocative query to one of the new listserves dedicated to the support of parents with children with CAH, asking to speak with parents of children with “intersex” conditions.  That inquiry created considerable suspicion, first that I was not interested in parents’ experience, but sought access to their children of whom the parents were rightly protective, and second that this interest was not in questions of vulnerability, but in the “freakishness” of their children.  Just when the members of the listserv declared an end to the project before it had begun, Ruby’s daughter, who was lurking on the list, sent me a one-line e-mail message: “My mom will talk to you.”

Stress accrues raindogscine.com shipping free viagra money problem, marriage, job, and many other daily chores. Grapefruit can build the shot of symptoms with viagra prescriptions published here this drug. Along with this is the great challenge of finding the right financing option as soon as possible. find for more viagra sale in india viagra canada free There is a huge amount of confusion rather misconception doing the circling which states that this important male impotence drug actually helps one is getting ED. Having not spoken about the protracted ordeal she experienced managing her daughters’ medical conditions and their aftermaths, Ruby began immediately to tell her story in our first conversation, not stopping until she traced its entire arc.  She told me about her daughters’ intense anger about their treatment over many years.  She spoke about the physical scars from what Ruby affirmed were disfiguring surgeries, and about the emotional scars of repeated, invasive physical examinations.

The severity of their CAH made Ruby’s daughters ideal subjects for ongoing research and continuing efforts to improve care of children with CAH.  It also made them subject to others’ interests in their bodies in ways that caused them harm, even serious trauma from which their mother could not entirely shield them. Without health insurance or substantial income, Ruby was dependent on the doctors for her daughters’ care—something of which she would be continually reminded by those same doctors through most of her daughters’ childhood.

But her dependency did not mean that she was entirely powerless.  Because she lived at a distance from the doctors, they relied on her to monitor her daughters’ condition.  Ruby learned how to assess her children when they were ill (management of CAH is difficult when a child has even a common illness), and to treat the urinary tract infections to which the girls’ surgeries made them susceptible.  She learned that when doctors proposed care that she believed was not in her daughters’ best interests, she could speak up. Ruby was one of a group of parents who succeeded in persuading the doctors to allow parents in the clinic to have their own support group. The doctors withdrew support for the group when parents began to ask questions about what Ruby called “the gender issues” that each family had thought was particular to their daughter.  In retrospect, this seemed to Ruby, the moment when her advocacy for her daughters and for herself became most firmly rooted.

We did finally meet face-to-face, about two years after our initial conversation, and we maintained sporadic contact in the years since.  I had been in touch with her more frequently over the last year while I completed the book manuscript, Making Sense of Intersex: Changing Ethical Perspectives in Biomedicine, on the ethical questions raised by the medical management of atypical sex anatomies of children.  I wanted to know what she thought about the changes in the standard of care, and I wanted also to make sure that she approved of my publishing her story once more, which I sent her in early Spring.  After an unusual delay, she wrote to tell me she had just been released from the hospital, and had read the chapter I sent her.  She was glad to share her story, and she thanked me.  I knew that she had had some health problems, but was not aware until I received her message that she had been diagnosed with advanced stage cancer.  I didn’t realize until I spoke with her daughter that this last message to me was meant as a goodbye.

Ruby had told me I had made a difference in her life. She was so happy to know that readers of Surgically Shaping Children, where so many others have learned about her experience, understood what she and her daughters had suffered, and were fighting for change.  I don’t think she knew what a difference she had made in my life. I did tell her that any thanks were mine: Her sharing of the hard lessons she learned during her children’s early years helped me when I became the parent to fragile premature twins.  When doctors in the NICU proposed tests, I knew to ask why they thought the test was necessary.  And when their responses revealed that a given test result might be “interesting,” but would have no effect on the care of our girls, I knew, thanks to Ruby, to tell them no.

Now that my children are a little older, I remember what she told me about how important it was to help her girls learn to be their own advocates where their health was concerned.  She stood by them as she insisted they use their own voices, to ask questions, and trust their knowledge of their own physical needs.  This early training made her daughters effective partners to adult endocrinologists who have had no training in CAH.  When her younger daughter found, at mid-life, that she was unable to control the symptoms of CAH, and her own doctor was at a loss, she sought care at the children’s hospital where she had spent so many of her early years.  Initially refused care because she was an adult, she insisted that she be seen. The pediatric endocrinologist who finally agreed to see her diagnosed an adrenal tumor, and arranged surgery.

As Ruby’s health deteriorated, she said that her daughters were taking very good care of her—having learned the skills that she struggled to learn herself, and taught them by example.  As her younger daughter, who had put me in touch with her mother years ago, recounted how Ruby was only willing to die after having said her goodbyes and seen to the wellbeing of her daughters, grandchildren, and to the dogs and cats who had become her companions, I knew that she was once again offering another lesson on which I will gratefully draw.