From the Des Moines Register,

Early data suggests that children with disabilities are at a higher risk of death if they contract the H1N1 swine flu. (Earlier post here.) This leaves parents with a tough choice: leave kids with disabilities in school to keep things as normal as possible, or keep them home to avoid exposure.

In Iowa, school officials and health care agencies say most parents are keeping their kids with disabilities in school. They are taking precautions, like frequent hand washing and avoiding ill people, and are hoping to be among the first to receive H1N1 vaccinations as they become available.

See also:

CDC: Children with medical issues should get first H1N1 flu shots — CNN

(Des Moines Register photo)

From a press release from the National Council on Disability:

People with disabilities face significant barriers to health care and are in need of immediate health care reform, according to a federal report released yesterday.

The report by the National Council on Disability found that people with disabilities frequently lack health insurance or coverage for necessary services, are disproportionately in poor health because their health conditions are not well managed, and are less likely to use preventive health care measures.

Among barriers faced by people with disabilities, the report found, are stereotypes about disability; medical personnel who haven’t been trained in meeting their needs; a lack of accessible medical facilities, equipment, and sign language interpreters; and a health care system that is more concerned with preventing disability than with improving the quality of life of people who have disabilities.

(more…)

From ABC News:

Delegates at the annual meeting of the American Medical Association (AMA) voted this week that obesity should not be considered a disability. Doctors said that the decision would benefit the public by allowing doctors to speak freely with patients about their weight.

“If obesity is designated as a disability, physicians could be sued or reprimanded for discrimination under the Americans with Disability Act if a patient takes offense at the physician discussing obesity,” the resolution states. “Therefore be it resolved that our American Medical Association not support the effort to make obesity a disability.”

Efforts of well-meaning doctors, parents often had tragic results, authors find

In the San Francisco Chronicle, Heidi Benson reviews “Normal at Any Cost: Tall Girls, Short Boys, and the Medical Industry’s Quest to Manipulate Height.”

Authors Susan Cohen and Christine Cosgrove trace the history of height manipulation over the decades, interviewing men and women whose lives were changed by it. They find some dire consequences, including infertility, depression, and even death.

“This book is not an indictment of technology,” the authors write, “but an illustration of how quickly medicine can move from curing disease, to treating disability, to leveling disadvantage, to satisfying desires for perfection.”

“… we end the book with a plea for an acceptance of diversity and an end of conformity,” Cohen said. “Adolescents will always be miserable, but they may be less miserable if people value and understand diversity.”

Cosgrove (at right) was one of thousands of girls who were given synthetic estrogen in the 1950s to limit their growth. She spent five years taking daily doses of diethylstilbestrol (DES), and has been left with lingering questions about the long-term effects of a drug now linked to elevated risks of fertility problems and cancer.

See also: Tall West Michigan women say there’s no need to be afraid of heights — Grand Rapids Press

(San Francisco Chronicle photo)

A study in the current issue of Pediatrics reports that parents of premature infants place a ‘significantly’ higher value on their children’s lives, regardless of disability, than do health care workers who are involved in neonatal care decision-making.

Most health care workers surveyed said that having multiple disabilities is worse than death, whereas most parents of premature infants said that death would be worse than living with disabilities.

Researchers reported that parents of premature infants were most likely to want to save an infant at all costs. They say parents of premature infants who have experience caring for children with disabilities should be included in counseling new parents of critically ill infants.

Their participation is needed, the researchers say,

“so that a balanced view could be presented to parents of critically ill infants and increase the probaility that they would make informed decisions that they would not later regret.”

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From the Asbury Park [NJ] Press with video:

Parents of children with Down syndrome say the healthy, fulfilling lives of their children, like Conor Wright, 18, (shown left), are a far cry from the bleak picture often given by doctors delivering a Down syndrome diagnosis.

A new federal law is supposed to “better inform medical professionals and parents about the realities of the genetic condition” instead of focusing on outdated information and the worst possible outcomes, advocates say.

Better health care and inclusion mean that people with Down syndrome are living longer and more meaningful lives – attending regular schools, holding full-time jobs, playing an active role in their communities, and some even driving cars and attending college.

Conor’s mother, Joyce Wright, says “Life is good,” says Joyce Wright, Conor’s mother.”There are challenges, but the positives so outweigh the negatives.”

See also:

Family says Down diagnosis needn’t be seen as a burden – Asbury Park Press

Earlier posts here and here.

(Asbury Park Press photo)

A doctor asks: What would you do if you learned your fetus had a 1 in 6 chance of being born with Down syndrome?

Writing in the Boston Globe Sunday magazine, Dr. Adam J. Wolfberg explores two cases in which couples receive prenatal screening results signaling a high risk of Down syndrome in their fetuses. Wolfberg, who practices maternal-fetal medicine at Tufts Medical Center in Boston, describes people with Down syndrome as having “profound medical, cognitive and behavioral challenges.”

Scott and Gail Trinque of Lakeville, MA, decide to proceed with the pregnancy. Their 3-year-old son Theo is featured in a Globe video. Sonia and Dave, engineering graduates of MIT who do not allow their full names to be used, decide to terminate.

Wolfberg analyzes the dizzying maze of statistics that surround prenatal testing. He says parents find the testing options and their interpretation to be “unintelligible,” and their inability to provide definitive answers “maddening.” Clinicians who are charged with explaining the results, he says, often “don’t entirely get it.”

At their best, obstetricians provide their patients with information and counseling that empower them to make the right decision — about testing, and about what to do with the results of these tests. As an obstetrician specializing in complex pregnancies, including those affected by Down syndrome, I try to be informative, supportive, and non-directive, but I recognize that the options are confusing and the decisions momentous.

Abortion rates in cases involving Down syndrome vary widely, Wolfberg says: 85 percent in Paris;  21 percent in Atlanta; and 6 percent in Utah.

“We conclude that there are cultural differences, in terms of what women see as the norm, what cultural attitudes pervade, and what sort of counseling they are getting from their doctors,” says Helen Dolk, a professor of epidemiology at the University of Ulster in Northern Ireland.

See also:

Doctor flubs a conversation on prenatal diagnosis and decides to start over — By Dr. Lony C. Castro in the Los Angeles Times

I spoke slowly to make sure the patient and her husband could ask questions. The cold stares disappeared, and the couple began to take part in the discussion. They assented to the ultrasound (which did not show any evidence of physical anomalies), but declined the amniocentesis. When the patient left, she gave me a grateful smile. “Thank you,” she said, “we were so worried, we didn’t understand this test at all and now we do. The time you spent with us made it worth the wait.”