Well: Living with Cancer: Careless Care

Living With Cancer

Susan Gubar writes about life with ovarian cancer.

When I consider what happened to an esteemed friend and colleague, I fume at the mayhem that ovarian cancer wreaks and at the deficient care she received at a university hospital in another town. Do instances of medical negligence sometimes go unnoticed because patients are so debilitated that they cannot testify — especially if they are still in treatment?

After diagnosis, surgery and a round of chemotherapy, my friend had developed a habit of talking with me on the phone every Sunday night. Because of her bounteous insight and candor, it was a great pleasure for me, even though we often discussed her depression. As the months passed, she began suffering from abdominal pain, constipation and rectal bleeding, and her anxieties grew. A CT confirmed growing malignancies.

In "The Ultimate Guide to Ovarian Cancer," Dr. Benedict B. Benigno explains that "when a patient develops a recurrence, she has an overwhelming chance of developing yet another recurrence." It's no wonder that with little hope of putting cancer in the past tense, my friend was dismayed.

The plight of this younger woman fills me with a loathing of cancer, which has blighted my life. "You think you were depressed before?" the disease sneers, like an abusive parent. "I'll give you something more to get depressed about."

Getting mad at cancer is pointless, but now I have another target for my anger: the negligent care my friend received.

Despite the abdominal pain, constipation and rectal bleeding, the gynecologic oncologist did not arrange a personal consultation until 13 days after the CT. When the meeting finally occurred, the oncologist sketched three miserable options: chemotherapy with only a 20 percent chance of arresting the tumors; a trial at a distant hospital for which, in any event, she might be ineligible; or no treatment except palliative care.

Back at home deliberating on these alternatives, my friend happened to have an attack of vertigo, unrelated to the cancer, which landed her in the emergency room. Only because of this coincidence did a doctor there decide that she had to be hospitalized. Twenty-four hours later, another doctor ordered an X-ray that showed she had a bowel obstruction. Without surgery, she would have died one or two days later from a perforated bowel.

Horror enough, surely, but other calamities followed. After she had an emergency colostomy, her husband was unable to find anyone in the hospital to help with the persistent problem of rectal bleeding. One doctor proposed taking her off heparin, an anti-coagulant routinely prescribed after surgery to stop clot formations. A nurse pointed out two problems: Through a dangerous oversight, heparin had not actually been administered after the emergency operation — and it could not have caused the bleeding, which had started before surgery.

Eventually, the same doctor who had diagnosed the bowel obstruction decided the best course was to control the bleeding with localized radiation. As my colleague's husband, a medical researcher, put it in an email to me, "This is a good plan, but the process by which the gynecological oncology team made the decision resembles brain surgery performed by middle school children."

If we cannot destroy cancer, at least we should be able to put a stop to this sort of negligence. The word "negligence" derives from the Old French word for sloth or the Latin word for carelessness. In tort law, it signifies a failure to exercise the care that a reasonably prudent person would exercise in like circumstances. Not intentional harm, "just" sloppy incompetence and inexcusable inattention.

I cannot help wondering if such carelessness is a particular problem for people with metastatic disease, and especially for women with gynecological cancers. These malignancies infest the abdomen and then the bowels, not easy matters to discuss publicly. There is no detection tool and no treatment that saves the majority of those with these cancers from death. Do some doctors disengage when a disease is assumed to be incurable — when people need more, not less, assistance?

Because I am all too aware of the diabolic tenacity of ovarian cancer, I realize that it remains the villain in my friend's case. Yet all the careless care — the 13-day delay, the oncologist missing clear signs of a bowel obstruction, the mix-up on the heparin — jeopardized her life and undoubtedly contributed to her deepening depression. Negligence cannot be said to have caused the harm that cancer wrought, but it certainly compounded it.

I pray that my friend will find a treatment that will allow her to continue living a comfortable life as long as possible. Though I fear hospitalizations and medical interventions, as she does, this is the provisional decision I have made after three recurrences. But I am blessed with an oncologist who would never make me wait 13 days for an appointment.

After I went on the web to order flowers in celebration of my friend's going home from the hospital, I was about to finalize the transaction when I noticed an error in the "Send to" box. The address I had typed was correct, but the name of the recipient was my own.

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Well: Hurricane Stress Linked to Stillbirths

Hurricanes Katrina and Rita significantly increased the number of stillbirths in the Louisiana parishes most affected by the storms, new research suggests.

The 2005 hurricanes resulted in almost 2,000 deaths of children and adults, but researchers have concluded that as many as 205 excess fetal deaths should be added to the toll in the six hardest hit parishes.

Using data on housing damage gathered by the federal government, researchers found that between 117 and 205 stillbirths in the six most severely affected parishes could be attributed to distress caused by the storms — an estimated 17.4 to 30.6 percent of all storm-related deaths in those areas.

Writing in The Journal of Epidemiology & Community Health, the authors acknowledge that their figures are rough approximations. Housing data does not capture the full extent of the loss, and the forced migration of many people complicates the picture. Still, they estimate that for every 1 percent increase in the destruction of houses, there was a 1.7 percent increase in fetal deaths.

"You can have two mothers with equal characteristics — age, race,and so on," said the lead author, Sammy Zahran, an associate professor of demography at Colorado State University, "but if one happens to be in a more severely destroyed area, the risk of still birth is higher."

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Phys Ed: Early Fitness Can Improve the Middle-Age Brain

Phys Ed

Gretchen Reynolds on the science of fitness.

The more physically active you are at age 25, the better your thinking tends to be when you reach middle age, according to a large-scale new study. Encouragingly, the findings also suggest that if you negligently neglected to exercise when young, you can start now and still improve the health of your brain.

Those of us past age 40 are generally familiar with those first glimmerings of forgetfulness and muddled thinking. We can't easily recall people's names, certain words, or where we left the car keys. "It's what we scientists call having a C.R.S. problem," said David R. Jacobs, a professor of public health at the University of Minnesota in Minneapolis and a co-author of the new study. "You can't remember stuff."

But these slight, midlife declines in thinking skills strike some people later or less severely than others, and scientists have not known why. Genetics almost certainly play a role, most researchers agree. Yet the contribution of lifestyle, and in particular of exercise habits, has been unclear.

So recently, Dr. Jacobs and colleagues from universities in the United States and overseas turned to a large trove of data collected over several decades for the Cardia study. The study, whose name is short for Coronary Artery Risk Development in Young Adults, began in the mid-1980s with the recruitment of thousands of men and women then ages 18 to 30 who underwent health testing to determine their cholesterol levels, blood pressure and other measures. Many of the volunteers also completed a treadmill run to exhaustion, during which they strode at an increasingly brisk pace until they could go no farther. The average time to exhaustion among these young adults was 10 minutes, meaning that most were moderately but not tremendously fit.

Twenty-five years later, several thousand of the original volunteers, now ages 43 to 54, were asked to repeat their treadmill run. Most quit much sooner now, with their running times generally lasting seven minutes or less, although a few ran longer in middle age than they had as relative youngsters.

Then, the volunteers completed a battery of cognitive tests intended to measure their memory and executive function, which is the ability to make speedy, accurate judgments and decisions. The volunteers had to remember lists of words and distinguish colors from texts, so that when, for example, the word "yellow" flashed onto a screen in green ink, they would note the color, not the word. (The participants did not undergo similar memory tests in their 20s.)

The results, published last month in Neurology, are both notable and sobering. Those volunteers who had been the most fit as young adults, who had managed to run for more than 10 minutes before quitting, generally performed best on the cognitive tests in middle age. For every additional minute that someone had been able to run as a young adult, he or she could usually remember about one additional word from the lists and make one fewer mistake in distinguishing colors and texts.

That difference in performance, obviously, is slight, but represents about a year's worth of difference in what most scientists would consider normal brain aging, Dr. Jacobs said. So the 50-year-old who could remember one word more than his age-matched fellows would be presumed to have the brain of a 49-year-old, a bonus that potentially could be magnified later, Dr. Jacobs added. "In other studies, every additional word that someone remembered on the memory test in middle age was associated with nearly a 20 percent decrease in the risk of developing dementia" in old age, he said.

In essence, the findings suggest that the ability to think well in middle age depends to a surprisingly large degree on your lifestyle as a young adult. "It looks like the roots of cognitive decline go back decades," Dr. Jacobs said.

Which would be a bummer for anyone who spent his or her early adulthood in happy, heedless physical sloth, if the scientists hadn't also found that those few of their volunteers who had improved their aerobic fitness in the intervening years now performed better on the cognitive tests than those whose fitness had remained about the same or declined. "It's a cliché, but it really is never too late to start exercising," Dr. Jacobs said, if you wish to sharpen your thinking skills.

This study did not examine why exercise may increase brainpower. But, Dr. Jacobs said, other studies, including some that have used the same data from the Cardia study, suggest that out-of-shape young people have poor cholesterol profiles and other markers of cardiovascular health that, over time, may contribute to the development of plaques in the blood vessels leading to the brain, eventually impeding blood flow to the brain and impairing its ability to function.

"The lesson is that people need to be moving throughout their lives," Dr. Jacobs said.

 

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Well: Stories as a Window Into Schizophrenia

Slide Show

CINCINNATI — The psychologist Lynda Crane found that of the many injuries inflicted by schizophrenia, the greatest could be the pain of being forgotten. Just naming the illness somehow erased the person, something she learned when her 18-year-old son's doctors said he had schizophrenia. Six years later, he committed suicide.

"It took me a long time to come to terms with it," Dr. Crane says. "Even I had a hard time understanding it, how this bright man, with a brilliant future, could suffer like this. One thing I learned was that as soon as you mentioned the word, people stopped seeing the person. They just saw the diagnosis and a collection of symptoms. Doug, my son, was forgotten."

For years Dr. Crane, a professor at the College of Mount St. Joseph in the western hills of Cincinnati, sought a way to enlighten her students and others about the ordinary people who live with schizophrenia despite its extraordinary burdens – the confused thinking, the delusions, the hallucinations, the anxiety and fear. Then she discovered a tool more commonly used among sociologists and anthropologists: oral history. Employing the device to examine schizophrenia has shifted her own perspective about a disease she thought she knew well.

"People with schizophrenia do not lose their individuality, even when the illness is very severe," Dr. Crane says. "What I discovered through oral history is that it's not about schizophrenia. It's about a complexity of life that is very hard to get at any other way."

For the past three years, on their own time and with no outside money, Dr. Crane and a fellow Mount St. Joseph psychologist, Tracy McDonough, have built the Schizophrenia Oral History Project. Other oral history collections have focused on diseases like AIDS or leprosy, but this is the first to focus on schizophrenia, they say.

So far they have recruited two dozen people to sit down with them and a voice recorder, asking their "narrators" simply: What's it like to be you?

"The real beauty of this project," says Dr. McDonough, "comes out of the fact that Lynda and I really try not to ask a lot of questions. The narrators want to tell their stories. They have something to say. Many of them have told us that no one has ever asked them about their lives before."

The psychologists began the project by alerting local mental-health organizations that they were looking for participants willing to volunteer directly. "We didn't want the providers to make the call because that can create a sense of, 'I have to do this because my therapist wants me to,'" Dr. Crane says. "So each of the narrators had to take the initiative."

One participant, Shirley Austin, 47, lives by herself on the west side of Cincinnati with her terrier, Fluffy. After a nightmarish childhood of violence and sexual abuse, Ms. Austin learned as a teenager that she had schizophrenia, and she says that even though she takes her medication, has relatives nearby and attends a church, she wrestles with loneliness. When her therapist told her about the oral history project, she was curious.

"Not even my therapists have ever asked me about my life that much," Ms. Austin says. "I felt like I got strength and courage talking about what happened to me. I want to tell all the teenaged girls to be strong, that I'm a survivor, and they can be, too."

Dr. Crane and Dr. McDonough have delivered more than 30 talks about the project in the Cincinnati area, visiting schools and local groups and collecting responses.

"I like to think of myself as open-minded, but the Schizophrenia Oral History Project helped me see that I was stigmatizing patients," said Vicki Cheng, a nursing student at Miami University who heard one of the talks. "I would not have been surprised to learn that a patient with cancer or heart disease loved organic gardening or painting. Why in the world should I be surprised that someone with schizophrenia has hobbies, too?"

The project has benefited participants, too, like Alice Fischer, 43, who has schizoaffective disorder, a variant of schizophrenia, and lives with her mother and brother in her childhood home in Cincinnati's Price Hill neighborhood. Ms. Fischer said she had been teased since grade school well into adulthood. "Even right now, sometimes on the bus, people say mean things to me," she said.

She jumped at the chance to join the oral history project as one of its first narrators because she says newspapers and television too often communicate the wrong idea about people with mental illness. Ms. Fischer also prodded her brother, who has schizophrenia, to participate in the oral history project, but he resisted, fearful of repercussions from going public with his illness.

The project's website features Ms. Fischer's vivid paintings of owls or hearts or handprints with upbeat messages for world peace. "I want people to know I'm not dangerous," she says. "They don't know what a nice person I am."

One of the narrators most gravely affected by schizophrenia is Paul Drake, 49, who for 14 years has lived with a tabby cat named Tiger in a small cluttered apartment on Cincinnati's west side. Through his reading, he learned organic gardening to supplement his meager food budget. He starts tomatoes and other vegetables on his windowsill and grows them on a small plot behind his building. He has taught his neighbors how to garden.

Dr. Crane and Dr. McDonough have shared with the narrators some of the written responses they've received from listeners to the oral history project; one comment for Mr. Drake said, "I respect Paul's insights and appreciate his straightforward sharing of how he copes."

Mr. Drake says the positive reactions "make me feel good." Amid the disorder of his mind, he frames a sentence to describe the impact that his participation has had on him.

"It gives me," he says, "some immortality."

Dr. Crane is retiring from teaching this spring and turning over leadership of the Schizophrenia Oral History Project to Dr. McDonough, who has been applying for grants to support the work and searching for more narrators.

A few weeks ago, they got a call from Alice Fischer's brother. He said he was ready now to tell his story.

Anne Saker is a writer in Maineville, Ohio.

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Well: Early Fitness Can Improve the Middle-Age Brain

Phys Ed

Gretchen Reynolds on the science of fitness.

The more physically active you are at age 25, the better your thinking tends to be when you reach middle age, according to a large-scale new study. Encouragingly, the findings also suggest that if you negligently neglected to exercise when young, you can start now and still improve the health of your brain.

Those of us past age 40 are generally familiar with those first glimmerings of forgetfulness and muddled thinking. We can't easily recall people's names, certain words, or where we left the car keys. "It's what we scientists call having a C.R.S. problem," said David R. Jacobs, a professor of public health at the University of Minnesota in Minneapolis and a co-author of the new study. "You can't remember stuff."

But these slight, midlife declines in thinking skills strike some people later or less severely than others, and scientists have not known why. Genetics almost certainly play a role, most researchers agree. Yet the contribution of lifestyle, and in particular of exercise habits, has been unclear.

So recently, Dr. Jacobs and colleagues from universities in the United States and overseas turned to a large trove of data collected over several decades for the Cardia study. The study, whose name is short for Coronary Artery Risk Development in Young Adults, began in the mid-1980s with the recruitment of thousands of men and women then ages 18 to 30 who underwent health testing to determine their cholesterol levels, blood pressure and other measures. Many of the volunteers also completed a treadmill run to exhaustion, during which they strode at an increasingly brisk pace until they could go no farther. The average time to exhaustion among these young adults was 10 minutes, meaning that most were moderately but not tremendously fit.

Twenty-five years later, several thousand of the original volunteers, now ages 43 to 54, were asked to repeat their treadmill run. Most quit much sooner now, with their running times generally lasting seven minutes or less, although a few ran longer in middle age than they had as relative youngsters.

Then, the volunteers completed a battery of cognitive tests intended to measure their memory and executive function, which is the ability to make speedy, accurate judgments and decisions. The volunteers had to remember lists of words and distinguish colors from texts, so that when, for example, the word "yellow" flashed onto a screen in green ink, they would note the color, not the word. (The participants did not undergo similar memory tests in their 20s.)

The results, published last month in Neurology, are both notable and sobering. Those volunteers who had been the most fit as young adults, who had managed to run for more than 10 minutes before quitting, generally performed best on the cognitive tests in middle age. For every additional minute that someone had been able to run as a young adult, he or she could usually remember about one additional word from the lists and make one fewer mistake in distinguishing colors and texts.

That difference in performance, obviously, is slight, but represents about a year's worth of difference in what most scientists would consider normal brain aging, Dr. Jacobs said. So the 50-year-old who could remember one word more than his age-matched fellows would be presumed to have the brain of a 49-year-old, a bonus that potentially could be magnified later, Dr. Jacobs added. "In other studies, every additional word that someone remembered on the memory test in middle age was associated with nearly a 20 percent decrease in the risk of developing dementia" in old age, he said.

In essence, the findings suggest that the ability to think well in middle age depends to a surprisingly large degree on your lifestyle as a young adult. "It looks like the roots of cognitive decline go back decades," Dr. Jacobs said.

Which would be a bummer for anyone who spent his or her early adulthood in happy, heedless physical sloth, if the scientists hadn't also found that those few of their volunteers who had improved their aerobic fitness in the intervening years now performed better on the cognitive tests than those whose fitness had remained about the same or declined. "It's a cliché, but it really is never too late to start exercising," Dr. Jacobs said, if you wish to sharpen your thinking skills.

This study did not examine why exercise may increase brainpower. But, Dr. Jacobs said, other studies, including some that have used the same data from the Cardia study, suggest that out-of-shape young people have poor cholesterol profiles and other markers of cardiovascular health that, over time, may contribute to the development of plaques in the blood vessels leading to the brain, eventually impeding blood flow to the brain and impairing its ability to function.

"The lesson is that people need to be moving throughout their lives," Dr. Jacobs said.

 

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Well: Think Like a Doctor: 18-Year Rash Solved!

Think Like a Doctor

Solve a medical mystery with Dr. Lisa Sanders.

On Thursday, we challenged Well readers to figure out why a 40-year-old woman had a rash on her hands for nearly two decades. I thought this was a really tough case. Apparently, so did my readers. Nearly 300 of you wrote in with some very thoughtful suggestions, but only five were able to make the diagnosis.

And the correct diagnosis is:

Persistant photo-allergic dermatitis (also known as a persistent light reaction or chronic actinic dermatitis)

The first person to identify this rare cause of a persistent eczema-like rash was Errol Levine, a retired radiologist from South Africa now living in Santa Fe, N.M. He focused on the fact that the patient had moved and now had a longer drive to work. He figured that the unusual distribution of the rash could be caused by her wrapping her fingers around the steering wheel of her car. As you will see, that is exactly the logic used by the doctor who made the diagnosis.

I was impressed by how many of you realized that the rash was a reaction to light. That was something that eluded most of the patient's doctors and the patient herself. And I want to give a shout-out to Marcela Garcia of Munich, who first figured out why the rash had such a strange distribution on her hands. Outstanding work, all of you!

The Diagnosis

This patient's rash was caused by sunlight reacting with a chemical in her skin, setting off an allergic reaction. Here's how that works: Certain substances can be transformed into irritants by light, especially by ultraviolet light. As you may recall from high school science class, ultraviolet, or UV, light is a form of electromagnetic radiation with a wavelength shorter than that of visible light. One type of ultraviolet light, UVB, causes sunburn. Another type, UVA, doesn't cause the skin to burn, but to tan – it's what's used in tanning beds. And, in this case in particular, it's important to know that UVA rays, unlike UVB ones, are able to travel through glass.

In patients with a photo-allergy, sunlight alone doesn't cause a problem, and on its own, a particular substance, either taken by mouth or applied to the skin, is something benign and tolerated. But the two together cause a rash that looks exactly like an allergic reaction (also known as a contact dermatitis) — because that's what it is.

To treat the rash, you have to get rid of either the allergen or the light. Steroid creams and emollients can help but will not cure the rash as long as the chemical and the light are at work causing the reaction.

This strange — and rare — reaction was first recognized in the 1960s when thousands of people developed a sun-triggered allergic rash after using a soap that had been made with an antibiotic called tribromosalicylanilide. Over the next several decades the reaction was observed with a few components of perfumes (musk ambrette and coumarin) and cosmetics (eosin in lipstick). Most of these substances are no longer in use.

These days, the most commonly encountered substance linked to this type of photo-allergy is, oddly enough, sunscreens containing the chemical PABA and its derivatives. Most people are able to use these compounds without a problem, but some will develop an allergic reaction in sunlight. PABA derivatives are not just in sunscreen creams but also in some hairsprays and cosmetics to reduce sun damage caused by ultraviolet light. These products can often be identified by the anti-aging claims made by the manufacturers.

The photo-allergic reaction can look like a sunburn but more often like a typical contact dermatitis. As with this patient's rash, it usually starts with small vesicles filled with clear fluid that itch and eventually become red, raw and shiny or thickened.

But there's another wrinkle in this diagnosis. Most of the time, these allergic reactions are transient. Once the chemical causing the reaction is removed, the injury stops and the skin starts to heal. However, there are some patients for whom the response continues long after use of the triggering chemical ends. No one knows why this happens. For these patients, protection from light is the only effective therapy.

How the Diagnosis Was Made

When Dr. David Grekin, the dermatologist whom the patient turned to, examined her hands, he noticed that her fingertips were free of rash. He'd seen that kind of distribution only once, in an elderly dermatologist friend who had spent most of his life in Hawaii and had hands riddled with evidence of sun damage along the back of his hands, but not the ends of his fingers.

When asked about his hands, the older dermatologist explained that fingers curl under when they are in the normal relaxed position and so are protected from the sun rays that damaged the rest of his skin. As soon as Dr. Grekin saw that this patient's fingers were spared, he thought that the rash may have been caused by the sun.

He didn't tell the patient what he thought she might have. Instead he asked her some questions to help him figure this out.

Do you spend a lot of time outside? Not really.
Do you garden? A little.

Dr. Grekin was a little disappointed. Just being out in the sun wasn't causing the strange distribution. He kept probing. What shielded her fingers from the sun?

Do you play tennis? No.
Do you drive to work? Yes.
How far and in what direction? About 20 minutes, going south to work each morning and north coming home, she told the doctor.
And do you hold the wheel at 10 and 2? (He was referring to the driving-school terms for the hand position they teach.) Yes.

That was it. Now Dr. Grekin was certain he knew the cause of the rash. Your hands are allergic to sunshine, he told the patient. He explained his thought process. Driving south to work in the morning and home north in the afternoon put the driver in the sunny side of the car both ways. The UVA light streaming through the windows was setting off the allergic reaction.

The cure for this rash was to wear gloves when she was outside, he told her, especially when she was driving. Protecting the skin from the sun should prevent further injury and her hands should start to heal. He suggested using gloves made of a material that blocked UVA light – leather or a specialized light-resistant fabric — whenever she was outside.

What was she allergic to? the patient asked. She had changed every cream, every soap, every lotion many times since this rash had started. Dr. Grekin wasn't sure. Indeed, they would probably never know, he told her. But something she had used years earlier had started the reaction and it lived on, long after the trigger was gone, in what is called a persistent light reaction.

No one knows why this reaction continues, but Dr. Grekin has a theory. He suspects that for some reason, the triggering chemical penetrates the skin and becomes permanently imbedded in the deeper layers of the skin — like tattoo ink — so that these people will have a lifetime of sun allergy, even if they never use the offending agent again. For those with this persistent form of injury, only avoiding the light will allow the skin to heal.

A Return to Normal

As soon as the doctor told her that he didn't think her rash was eczema, the patient felt a wave of relief. If it wasn't eczema, maybe it could be cured, she thought. She answered Dr. Grekin's odd questions, anxiously awaiting his diagnosis.

When he suggested that she could eliminate the rash simply by wearing gloves when she drove, she was ecstatic and amazed. All those years of creams and bleeding and bandages could end with a pair of lightproof gloves. She started wearing leather gloves immediately and ordered a lighter pair off the Internet.

She visited a friend who'd known her through many years of the rash and told her of this new diagnosis. The friend was excited but skeptical. She examined the patient's hands carefully and they marked their calendars to check again in six weeks to see if there was any improvement.

They didn't have to wait that long. The very next week the friend declared that the patient's hands looked "as if they belonged to someone else." They were still red but much better. By the end of the month they looked nearly normal.

Now, just over a year after her diagnosis, the patient's hands are fine. The only remnants of the rash are a few faint scars at the knuckles. And, she told me proudly, she's bought only one box of adhesive bandages since she got the gloves — and she hasn't even used them on her hands.

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Well: Hurt Before the Birth

Personal Health

Jane Brody on health and aging.

It was long assumed that brain injuries in newborns resulted from insufficient oxygen during labor or delivery. Distressed parents often blamed doctors, a belief that spawned countless malpractice suits and prompted many obstetrician-gynecologists to abandon the delivery room.

The truth is far more complex, according to an important new report by a committee of experts in obstetrics, pediatrics, neurology and fetal-maternal medicine. Many conditions that occur during or even before pregnancy can lead to neurological damage to full-term babies.

The document, called Neonatal Encephalopathy and Neurologic Outcome, updates a version published in 2003 that focused on oxygen deprivation, or asphyxia, around the time of birth. The new report, which highlights significant advances in diagnosis and treatment in the decade since, was published by the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics. Brain injuries affect about three in 1,000 babies born full-term in the United States, but only half of these cases are linked to oxygen deprivation during labor and delivery, according to the new report. And even in those instances, a problem that occurred long before birth might have exaggerated the effects of a reduced oxygen supply that would have not otherwise caused a lasting brain injury.

According to the 2003 report, fewer than 10 percent of children with cerebral palsy, the most severe such brain injury, showed signs of asphyxia at birth. Unless certain clear-cut symptoms are present then, brain abnormalities are probably not the result of a complication during labor or delivery, the new report states.

Rather, there may be other reasons for neonatal encephalopathy, as brain disorders in full-term newborns are called. These include genetic factors and maternal health problems like hypothyroidism, placental abnormalities, major bleeding during pregnancy, infection of the fetal membranes and a stroke in the baby around the time of birth.

"We know that neonatal encephalopathy has a variety of causes, and we hope this report will enable us to provide more accurate information to affected families and devise better methods of prevention and treatment," said Dr. Mary E. D'Alton, chief of maternal-fetal medicine at Columbia University Medical Center, who was chairwoman of the task force.

Neonatal encephalopathy is a syndrome of disturbed neurological function that occurs in full-term baby's first days. It is characterized by impaired consciousness or seizures, often accompanied by breathing difficulties and poor muscle tone and reflexes.

To determine whether an insufficient supply of oxygen and blood during labor and delivery is the likely cause, several factors should be considered together. These include a low Apgar score at 5 and 10 minutes after birth; high acid level (called acidemia) in the umbilical artery; major organ failure; and an M.R.I. scan showing a particular pattern of cerebral injury, according to the new report.

The more of these conditions that are present, the more likely that insufficient oxygen during the birth was responsible for the injury.

Reassuringly, the report pointed out that most infants with low Apgar scores will not develop cerebral palsy. "Even in the presence of significant acidemia, most newborns will be neurologically normal," the committee said. (A doctor evaluates a newborn on five criteria to arrive at the Apgar score, a fast way to gauge the baby's well-being.)

The experts noted that "there are multiple potential causal pathways that lead to cerebral palsy in term infants, and the signs and symptoms of neonatal encephalopathy may range from mild to severe, depending on the nature and timing of the brain injury."

For example, the injury might occur as a result of risk factors at the time of conception or from conditions that develop during pregnancy, like fetal growth retardation or placental lesions.

At this time, there are few effective remedies for those problems, but if certain abnormalities in the fetal heart rate are present when a woman goes into labor, the doctor may be able to prevent a serious brain injury by doing a cesarean delivery.

A major advance during the last decade has been the use of hypothermia for newborn babies who suffer oxygen deficiency. The treatment cools the baby from a body temperature of 98.6 degrees to 92.3 degrees for 72 hours to minimize brain damage. Still, more than 40 percent of babies so treated develop injuries anyway.

Another major advance involves M.R.I. of the baby's brain, which helps to pinpoint both the timing and extent of an injury. If an M.R.I. is abnormal the day the baby is born, Dr. D'Alton said, the injury most likely occurred before delivery.

An abnormal M.R.I. on Day 3, accompanied by certain labor and delivery problems, suggests that oxygen deprivation around the time of birth caused the brain injury. But if the M.R.I. is normal on Day 3 and no oxygen problem occurred during labor and delivery, then oxygen deprivation at birth is an unlikely cause of neonatal encephalopathy, Dr. D'Alton said.

An M.R.I. done 10 days after birth can indicate the extent of a baby's brain injury, Dr. D'Alton said. Brain injuries evolve, and it may take more than a week before the extent is evident on an M.R.I.

"Every major obstetrical facility should consider having an M.R.I. available in the neonatal intensive care unit so that sick babies don't have to be transported elsewhere," Dr. D'Alton added.

Further advances in preventing brain injuries depend largely on "changing the culture of health care delivery from one that names and blames to one that is dedicated to reducing medical errors through a constructive, nonthreatening and professional process," the report said.

In other words, doctors must be more forthcoming in reporting problems encountered during the care of pregnant women, especially at the time of labor and delivery. Such honesty can identify preventable causes of brain injuries in newborns and enable corrective action.

But it would be helpful, too, for families to reconsider a leap to legal action whenever babies are born with a brain injury. Such suits put doctors on the defensive and make them unwilling to report problems that might have been prevented.

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Well: Helmets Do Little to Help Moderate Infant Skull Flattening, Study Finds

Pediatricians have long urged parents to put newborns to sleep on their backs to help prevent sudden infant death syndrome. While the practice undoubtedly has saved lives, it also has increased the numbers of babies with flattened skulls.

Roughly one baby in five under the age of 6 months develops a skull deformation caused by lying in a supine position. Now a study has found that a common remedy for the problem, an expensive custom-made helmet worn by infants, in most cases produces no more improvement in skull shape than doing nothing at all.

The new report, published Thursday in the journal BMJ, is the first randomized trial of the helmets. The authors found "virtually no treatment effect," said Brent R. Collett, an investigator at Seattle Children's Research Institute and author of an accompanying editorial.

Skull flatness at back of the head may be accompanied by facial asymmetry; one ear may be slightly farther back than the other, and sometimes the side of the head can flatten. Until now, less rigorous studies had mostly shown helmets did help normalize head shape.

The helmets are sometimes adorned with stickers, and are sometimes painted to resemble a pilot's helmet or with the logo of a beloved football team. "I was very surprised at the results," Dr. Mark R. Proctor, an associate professor of neurosurgery at Boston Children's Hospital, said of the new study, adding that it was "rigorous."

Still, the study leaves open the possibility that the helmets may still be useful for infants with severe skull flattening and those with tight neck muscles, which make it hard for infants to turn their heads, so they remain in one position. Researchers from the University of Twente in the Netherlands assigned 42 babies who had misshapen skulls, aged 5 to 6 months old, to wear a custom-designed helmet that allows flattened areas room to round out as the infant's skull expands.

Parents were instructed to have infants wear the helmets 23 hours a day for six months or so. Another 42 babies with similar deformities received no treatment. Infants with the most severe deformities were excluded.

After two years, a researcher who did not know which babies had worn helmets evaluated skull shape in the infants. The improvements were not significantly different between the helmet-wearers and the infants not wearing helmets.

"There are definitely cases of infants with mild to moderate skull deformation who are treated with helmet therapy, and this study confirms and reaffirms that this is not necessary," said Dr. James J. Laughlin, an author of the policy statement on skull deformities for the American Academy of Pediatrics.

Helmets to treat flattened skulls range in price from $1,300 to $3,000, and parents are told to make sure infants wear them around the clock. Dr. Laughlin said the paper provides pediatricians and worried parents "reassurance that not doing helmet therapy will give you the same results as doing helmet therapy, which is expensive" and can be "stressful for the family."

Makers of custom helmets questioned the study's results. Tim Littlefield, a spokesman for Cranial Technologies, called it "inherently flawed." William Gustavson, a spokesman for Orthomerica, called it "alarming" that nearly three-quarters of parents whose children received helmets in the study reported that the helmets shifted or rotated on their infants' heads.

"The value of this research is fully reliant upon the quality of the fit," said James Campbell, the vice president of the American Orthotic and Prosthetic Association, a trade group.

Some surgeons worried that the finding would be applied too broadly, jeopardizing insurance coverage for severely affected children who could benefit from helmets.

"What I fear happening is that children with a severe deformity are going to be denied helmets based on this evidence, which is really only talking about moderate cases," said Dr. Alex A. Kane, the director of pediatric and craniofacial surgery at UT Southwestern and Children's Medical Center in Dallas.

Courtney Reissig, 31, a stay-at-home mother in Little Rock, Ark., doesn't regret the eight months her son, Luke, wore a helmet. He had neck muscles so tight that he favored lying on his left side in bed, to the point that it "looked like the side of a toaster — flat, not round," Mrs. Reissig said.

He outgrew his first helmet, which cost $1,300, and required a second, she said. But wearing a helmet helped round out his head, and he now closely resembles his twin, Zach. "I do feel like the helmets were worth it," she said.

Only about a quarter of the babies in the BMJ trial made a full recovery by the age 2.

"This is a problem we created," said Dr. Proctor, of Boston Children's Hospital. "All parents are told is sleep the child on their back. They aren't told about flat heads and how to prevent it."

Some pediatricians and specialists advise parents to try repositioning an infant's head before considering a helmet.

Repositioning entails alternating to which side the infant's head turns once they are asleep on the back. That way, pressure isn't always squarely on the back of the head.

Repositioning isn't as feasible for infants with tight neck muscles, known as torticollis. They may benefit from physical therapy, said Dr. Chad A. Perlyn, craniofacial and pediatric plastic surgeon at Miami Children's Hospital.

In addition to repositioning, he advises parents to try more tummy time and to limit time spent in car seats. Use a baby carrier, he added, because "when the baby is awake, there's no deforming force on the skull."

Doctors noted that some helmet makers encourage parents to diagnose flattened skulls on their own, without a doctor's evaluation. It's important for a physician to rule out craniosynostosis, or bones fusing together prematurely, as a cause, they said. That much rarer condition requires surgery.

On the Web sites of some helmet manufacturers, assessment tools encourage parents to compare their infant's head shape to pictures.

"It's a bit like having the wolf guarding the henhouse," said Dr. Proctor.

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Well: Ask Well: Triglycerides and Heart Disease

A

High levels of triglycerides — a type of fat that circulates in your bloodstream — can signal an increased risk of heart disease, but not always. It depends on why they are elevated in the first place, said Dr. James A. Underberg, a clinical assistant professor of medicine at NYU Langone Medical Center and the director of the Bellevue Hospital Lipid Clinic.

The American Heart Association sets the normal threshold for triglycerides at 150 milligrams per deciliter of blood. Some people have a genetic disorder that causes their levels to climb above 1,000, which puts them at risk for complications like pancreatitis, "but they don't seem at risk for heart disease," Dr. Underberg said.

Triglycerides can also rise as a side effect of certain medications, as well as from obesity and increased alcohol consumption.

Many people with Type 2 diabetes or at risk for it have a syndrome called "diabetic dyslipidemia" characterized by high triglycerides and a low concentration of "protective" HDL cholesterol. Levels of LDL, or "bad" cholesterol, may be normal in these people, but often they have a plethora of small, dense LDL particles that contribute to inflammation and raise heart disease risk.

While some studies cite high triglycerides as an independent risk factor for heart disease, others suggest it is hard to separate the impact of triglycerides from other factors. In a large analysis of studies published in Circulation in 2007, for example, researchers found a strong association between high triglycerides and coronary heart disease. But taking into account factors like HDL levels weakened the association between triglycerides and cardiovascular risk.

"What I tell my patients is that triglycerides themselves probably don't cause heart disease," Dr. Underberg said. "But for many people they can be a marker of increased risk — a warning sign that you need to look for things like small, dense LDL particles, low HDL, hypertension and diabetes."

Do you have a health question? Submit your question to Ask Well.

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Well: Think Like a Doctor: The 18-Year Rash

Think Like a Doctor

Solve a medical mystery with Dr. Lisa Sanders.

The Challenge: Can you figure out what can cause a rash that lasts 18 years?

Every month, the Diagnosis column of The New York Times Magazine asks Well readers to take on a difficult case and offer their own solution to a diagnostic riddle. This week, you'll find the case of a 40-year-old woman who had a rash on her hands that wouldn't go away. Can you help figure out what's causing it, and how she can clear it up? I will provide you with the same information her doctors had to see if you can figure out the cause of this mysterious rash.

The first reader to offer the correct diagnosis gets a signed copy of my book, "Every Patient Tells a Story," and the satisfaction of solving a case that stumped a dozen doctors.

The Patient's Story

"It's been like this for 18 years," the woman answered quietly. She held out her hands for the dermatologist to see.

"That's a long time," Dr. David Grekin murmured sympathetically as he took her hands into his own and carefully examined the red, rough, cracked skin that had come to dominate the woman's daily life.

As well as she could remember, the problem had started out as an ordinary little rash – first she got tiny little bumps that looked like they might be filled with a clear liquid. They itched, she sometimes scratched and then the skin turned shiny and hard. It was eczema, she was told by her first dermatologist, and that made sense: she had hay fever and skin that seemed to react to everything. And her mother had eczema, though not this severely.

That doctor had given her a prescription for a strong steroid cream – the first of many. She used the cream and her skin improved, but the rash never really went away. Even when she was using the topical steroid her hands were often itchy, red and chapped.

From Bad to Worse

Then, a few years ago, not long after she'd bought her first house in a small town just north of her office, the rash seemed to worsen, a lot. When she curled her fingers, the skin at the knuckles would crack and bleed. Brushing her teeth would tear open the tender flesh over the joints. Washing her hair was a nightmare as the fine strands knifed through the cuts on her hands and fingers. Housework was frustrating, with whatever she was cleaning ending up smudged with blood. Washing dishes, folding clothes or making the bed would open the cuts embedded in the creases over the joints.

The woman started wearing medical gloves during household chores. Sometimes the gloves filled up with so much blood from her cracked hands that she had to change them, lest the blood seep out the top and soil whatever she was working on.

At work, she used adhesive bandages, which she bought in wholesale quantities, to cover the barely healing cuts. Many days she had one on every finger.

Looking for Help

People she hardly knew would comment on her hands. "That looks painful" was something she heard all the time, often followed by the suggestion that she should really see someone about her rash.

She certainly tried, seeking out highly recommended doctors in Milwaukee, the biggest city near her home. In all, she'd been to nearly a dozen dermatologists and allergists. All agreed that she had eczema. All recommended steroid creams and emollients. One doctor suggested that she put the cream on her fingers and sleep in gloves to improve the penetration into her skin. That helped, but the rash persisted.

Another recommended petroleum jelly each night under her gloves. Again, helpful, but the rash remained. A third suggested one of the new powerful immune-suppressing creams along with a steroid cream. The label had a long list of scary potential side effects – she didn't care. Still, it didn't work better than the other creams she tried.

Was it something she was allergic to? She changed her soap frequently and tried every lotion on the market. She sampled the full range of laundry and dish detergents. None of that seemed to matter.

She eliminated foods: No gluten. No dairy. No meat. She was a vegan for a while. None of it helped. When her last dermatologist started talking about ultraviolet radiation, a treatment used on patients with psoriasis, she looked around once more. Surely there was someone who could help her with her rash.

A Neighborhood Doctor

At this point, she had been to all the new hot doctors, all the ones written up in the local magazines, all the ones her friends swore by. So, this time she looked for someone close. She often had to see these doctors several times a year and figured she should at least make the visits more convenient. That's how she came to the office of Dr. Grekin.

It was late afternoon when she arrived at Dr. Grekin's office. The nurse took her to a bland examining room and asked her a series of questions. She didn't smoke or drink. The only medicines she used were an antihistamine and the cream for her rash. And other than the hay fever she had no allergies. She worked in an office; she didn't have pets.

A few minutes later Dr. Grekin walked in and introduced himself. He was older than many of the doctors she'd seen, in his mid-60's. His hair was white and he had a warm, unhurried manner. She liked him immediately and with a little encouragement the whole story came out.

A New Perspective

Dr. Grekin had reviewed the patient's records before going in to see her. Although he had never met her, she'd been seen by other doctors in his practice group. The first note was from over a decade earlier. Her most recent visit was a year ago. All the doctors she saw seemed to agree – this was some type of eczema.

You can see the note from the first doctor in the practice and the most recent one reviewed by the doctor here. Dr. Grekin told me that the notes in between don't offer any additional information or insight.

A Peculiar Rash

Most eczema can be managed with the judicious use of steroid cream and moisturizers and by avoiding known triggers. When patients ended up in Dr. Grekin's office worried about their eczema, it was usually because of a misunderstanding about the chronic nature of the rash. Eczema will return when the triggers are present, but using the cream again will usually get it under control. Still, there was always the possibility that something else was going on.

The patient was a pleasant, young-looking woman, and when she told her story, Dr. Grekin realized that whatever was making her rash persist, it wasn't because she was ignoring doctors' recommendations. She was very clear about what she had done, how often she was doing it and how poorly it worked.

The rash, Dr. Grekin noted, was limited to the back of the hands. One oddity stood out immediately: the rash spared the ends of the fingers. From wrist to midway down the finger the skin was red, raw and irritated-looking. Some of the skin was shiny and thin; other areas were thickened and dull. None of the skin on that part of the hand looked normal. Each knuckle was lined with deep cracks. Some appeared to have bled recently. The entire length of the pinky on each hand was red. And yet the skin on the tips of the first three fingers — from just beyond the middle joint to the nails — looked completely normal. She had no rashes anywhere else on her body.

"Is your rash always like this?" Dr. Grekin asked – red on the back of the hand, on the knuckles and the first part of the finger but nowhere else?

Always, she assured him.

Do you wear gloves with the fingertips cut off? he asked. Never, she replied with a question in her voice.

Solving the Mystery

Dr. Grekin was quiet for a few moments, then announced, "I don't think you have eczema." He pulled over a bright light and looked hard at her fingers. "Nope, not eczema," he repeated.

Do you know what this patient has? Dr. Grekin did.

Post your answers in the Comments section. I'll post the answer tomorrow.

Rules and Regulations: Post your questions and diagnosis in the comments section. The correct answer will appear Friday on Well. The winner will be contacted. Reader comments may also appear in a coming issue of The New York Times Magazine.

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