Parents, doctors raise awareness of common birth defects (Baltimore Examiner)

Stolen years (Baltimore Sun)

Return of bird flu revives threat of human epidemic (Baltimore Sun)

Law on Flu Vaccinations May Be Tested (New York Times)

Congress strengthens ADA by expanding definition of disability (Daily Record)

 

 

 

 

 

Parents, doctors raise awareness of common birth defects

 

By Sara Michael

Baltimore Examiner

Sunday, January 4, 2009

 

As a first-time mother, Kristen Duklewski followed the pregnancy books to the letter. But the news that her newborn son, Dylan, had a cleft lip caught her off guard.

 

"I didn't know what it meant," she said. "It wasn't something I was prepared for."

 

The common birth defect quickly took a backseat when he was diagnosed with ventricular septal defect, or a tiny hole in his heart.

 

Dylan, who was delivered at Greater Baltimore Medical Center in Towson, had surgery at 3 months old to correct his lip, and dodged open-heart surgery because the hole shrank to the size of a pinhole. He just celebrated his second birthday.

 

Now, during National Birth Defects Prevention Month, Duklewski wants to encourage other parents to talk with people about having a child with a birth defect.

 

"It can happen to anybody," she said.

 

Each year, one in about 30 babies in the United States is born with a birth defect, which is a functional abnormality that leads to physical or mental disability, according to the March of Dimes. The defects can be caused by genetic or environmental factors or both, but the cause of about 70 percent of birth defects is unknown.

 

Cleft lip and palate, where the tissues of the mouth or lip don't form, are among the most common birth defects, and most can be corrected with surgery.

 

"It's very fixable," said Dr. Randolph Capone, co-director of the Greater Baltimore Cleft Lip and Palate Team at GBMC.

 

Babies with both cleft lip and palate may need up to five surgeries through their lives to fix the gums and nose, he said. There are no known ways to prevent it as there are with some other defects, he said.

 

In Maryland, 10 babies per 10,000 are born with cleft lip, and four to five babies out of 10,000 have cleft palate, said Dr. Susan Panny, director of the Office for Genetics and Children With Special Health Care Needs at the Maryland Department of Health and Mental Hygiene.

 

The number of children born with neural tube birth defects, such as spina bifida, have been going down in Maryland and worldwide, as more women are taking folic acid, a supplement shown to prevent these defects, Panny said.

 

Three in 10,000 Maryland babies have spina bifida, in which the fetal spinal column doesn't fully close in the first month of pregnancy.

 

"It used to be about three to five times that," Panny said.

 

The incidence of Down syndrome has gone up slightly, mainly because more women over 35 are having babies, which increases the risk of having a child with Down, Panny said.

 

To help ensure a healthy child, women should take vitamins with folate, avoid exposure to any toxic chemicals or radiation, and know their family history, Panny said.

 

Copyright 2008 Baltimore Examiner.

 

 

 

 

 

Stolen years

Alzheimer's is edging into midlife with diagnoses that upend the lives of victims and loved ones otherwise in their prime

 

By Stephanie Desmon

Baltimore Sun

Sunday, January 4, 2009

 

Kent Bugg came home from work one day a couple of years ago to learn that his wife, Dorothy Frohder, had abruptly retired from her job as a middle school guidance counselor.

 

The woman with four degrees realized that she just couldn't do the work anymore. She could no longer use her computer properly. There were other hints of something amiss. She had stopped keeping track of the money she was spending. She couldn't find the words for simple things.

 

On May 19, 2007, Frohder learned that what her husband had been attributing at times to a thyroid problem, at others to just plain aging, was really Alzheimer's disease. She was only 56 - seemingly too young to be diagnosed with this devastating illness of the very old.

 

Frohder, who lives in Anne Arundel County, is part of what appears to be a growing number of Americans with early-onset Alzheimer's, as many as 200,000 people in the United States, according to the Alzheimer's Association. Most people who get Alzheimer's are older than 65, with the majority in their 70s and 80s. But a small percentage are being diagnosed in the prime of their lives, when they have jobs and even young children.

 

"We're seeing more and more people in their 40s and especially in their 50s and early 60s with more serious memory problems than we've seen before. And many of them turn out to be Alzheimer's," said Dr. Constantine G. Lyketsos, chair of psychiatry at Johns Hopkins Bayview Medical Center.

 

He doesn't know why he is seeing more younger patients - it could be because baby boomers are pushing through this age group or there is a greater awareness of the disease. There aren't hard numbers, in part because Alzheimer's is notoriously difficult to identify, particularly in the middle-aged. It is not the first disease that comes to mind for this age group, and doctors often chalk up slips in memory to stress or depression. With Alzheimer's, Lyketsos points out, the brain slowly rots.

 

Doctors don't fully understand what causes Alzheimer's, early onset or otherwise, or why some people get it and others do not. Some genes have been linked to the disease. One dominant gene is believed to account for up to 10 percent of early-onset Alzheimer's, so if you have that gene, you will get the disease.

 

More is being learned, but there is no cure. Some medications may alleviate symptoms, but there is nothing to slow or stop progression of the illness, though not for lack of trying. Currently there are more than 100 medications in clinical trials.

 

Typically, Alzheimer's appears when people are in their mid-to late 70s and 80s. By age 85, there's a one in three chance of getting Alzheimer's disease, Lyketsos said. If you are between 65 and 75, there is a less than 1 percent chance. Early-onset Alzheimer's is even rarer. In Maryland, the Alzheimer's Association estimates there are just 3,200 people with early-onset Alzheimer's and another 5,000 or so with premature dementia.

 

"I've heard it said that Alzheimer's kills the brain of the patient and the heart of the family," said Carol Wynne, a nurse practitioner who runs an Alzheimer's Association support group for families dealing with early-onset disease. "It's very hard to watch - and as a society, we aren't set up to deal with them."

 

Kent Bugg and Dorothy Frohder met in 1982, on Halloween night when she was dressed in a homemade pumpkin costume and he was just dressed. He was a 22-year-old part-time college student and trucking company worker, and she was a 32-year-old high school guidance counselor in Georgia.

 

Despite their age difference, Bugg was drawn to care for her even back then, taking her out for a steak dinner on their first date. "I thought she was so skinny she needed meat on her bones," he recalled. Five years later they were married. They filled their lives with friends and family and work and travel. By day, Frohder became more and more accomplished at work, even spending a year running the guidance department for the Prince George's County schools. In her spare time, she would do exquisite needlepoint and crochet work.

 

Until she could do none of those things anymore.

 

In the spring of 2007, when she went to an annual checkup, the nurse noticed something amiss as Frohder tried to get out a word but could not. The doctor was concerned, too. She sent her patient to see a neurologist. He ordered an MRI and did some simple mental and memory tests. He diagnosed Frohder with Stage 1 Alzheimer's disease.

 

"I was dumbfounded," Bugg said. "It was hard to speak."

 

A year later, another doctor told them she had more advanced Stage 2 disease, her condition clearly deteriorating.

 

"This is happening too quickly," Bugg said. "Time is not on our side. It's our biggest enemy."

 

For now, Dorothy doesn't seem like an Alzheimer's patient. Her blond hair shows only hints of gray, her pale skin just beginning to show wrinkles. She gets around with ease, strong enough to help rake leaves in the backyard.

 

But at her Pasadena home on a recent afternoon, it is clear something is wrong. She can speak, though she often stumbles over words. At times she seems to be keeping up her end of a conversation, but a minute later, it is hard to follow what she is trying to say.

 

She repeatedly says, "I'm fine."

 

"I could do anything if they'd let me," she says, later adding, "I dress myself, I bathe myself, I can do all those things."

 

"You're very self-sufficient," Bugg assures her.

 

"And I'm going to stay that way," she said.

 

With Frohder now in a clinical trial - perhaps getting an experimental drug, perhaps just a placebo - the couple holds on to a small thread of hope. "This disease is taking over and limiting her abilities," Bugg said. "I just hope we can slow it down. I'd love to see a miracle happen."

 

This is not the life Kent Bugg imagined he would have at age 48. He figured he and Frohder, now 58, would still be working, saving up for a retirement to be spent out West or traveling the nation in a motor home. Now, he is the only one drawing a paycheck, as a customer service agent for AirTran Airways. Free moments are spent worrying about whether his wife will burn herself cooking or take her pills on time. Any dream of life on the open road has been deferred.

 

"She should be enjoying her retirement. She's been working since she was 16 years old. This should be a time in her life when she should at least be comfortable and safe," said Ann Frohder, 54, one of Dorothy's four sisters.

 

Instead, Bugg wonders how he will take care of his wife as her condition continues to worsen, worries about how she will be each night when he returns home from work. As he watches her sleep each morning, he fears this could be the day that this disease of constant indignities, of constant losses, will take so much that the Dorothy he knows won't be there when she wakes.

 

He does much of this alone (save for Ann, who recently moved to Maryland to help when she could).

 

The middle-aged don't usually travel this road. When Frohder goes to the local senior center on long lonely days while her husband is at work, the only people close to her age are some of the employees. When Bugg goes to a monthly meeting of the local Alzheimer's caregiver group, he is the youngest person there, usually by decades.

 

"The face of Alzheimer's disease has to change," says Wynne, who leads another support group. "It's not the 80-year-old sitting in a wheelchair who needs to be diapered. These are 40-and 50-year-olds who still function. They can bathe. ... They can go food shopping. It's not your grandmother."

 

The families of younger Alzheimer's patients face different challenges. Some with the disease have children (a member of Wynne's support group has two kids, ages 9 and 13). Many have relied on two incomes and have difficulty taking the financial hit that comes when the patient can no longer work. The healthy spouse may leave, unable to face what is coming.

 

When Dorothy Frohder was diagnosed more than 18 months ago, the doctor told her she should no longer drive. Though torn, her husband just couldn't take away the keys. It isn't like telling grandma she is no longer fit to get behind the wheel.

 

"To me, it is taking away some of her abilities to be free," Bugg said. "I want her to hold on to who she is, and being a human is having freedom and being able to enjoy life and not be locked in."

 

His wife's sister disagrees. She is afraid Dorothy will hurt herself or someone else. She worries Dorothy will get lost or be robbed.

 

"Ann begged me," Bugg said. "She wants me to get rid of the car."

 

Not long ago, Dorothy went to a store to return a teacup she had bought that was cracked. She called her husband, panicked. She had lost her keys. Eventually they were located, but Dorothy, by choice, hasn't driven since.

 

Dorothy Frohder spends much of her time isolated now. Her friends don't come by much. She can't do the many crafts that used to occupy her time; instead she just moves yarn back and forth instead of actually knitting.

 

One time, Ann thought it might be fun to take her sister for a manicure and pedicure. But Dorothy couldn't keep still. She kept putting her feet in the tub and then out as the manicurist tried to do her work.

 

"It was kind of like being with a child who is too young to do this," Ann Frohder said.

 

Dorothy is, her sister said, sometimes lucid, sometimes not.

 

"Usually not," Ann said.

 

Copyright 2008 Baltimore Sun.

 

 

 

 

 

Return of bird flu revives threat of human epidemic

 

Los Angeles Times

By Mary Engel

Baltimore Sun

Sunday, January 4, 2009

 

The deadly H5N1 virus, bird flu, has resurfaced in poultry in Hong Kong for the first time in six years, reinforcing warnings that the threat of a human pandemic still exists.

 

During December, India, Bangladesh, Vietnam and mainland China also experienced new outbreaks. In that same period, four new human cases in Egypt, Cambodia and Indonesia were reported to the World Health Organization. A 16-year-old girl in Egypt and a 2-year-old girl in Indonesia have died.

 

The new cases come at a time when the number of confirmed human deaths from H5N1 bird flu have fallen for two years in a row and fewer countries are reporting outbreaks among poultry. A United Nations report in October credited improved surveillance and the rapid culling of potentially infected poultry for helping to contain and even prevent outbreaks in many countries.

 

Yet H5N1 has continued to "at the very least smolder, and many times flare up" since the outbreaks began in 2003, said Michael T. Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota.

 

H5N1 has already been a disaster for poultry farmers in Asia. Public health officials estimate that as many as a half-billion fowl have been killed by the virus or culled to contain its spread, causing economic strain and food shortages.

 

But the bigger fear has always been that H5N1 would give rise to a human pandemic.

 

In Hong Kong in 1997, the H5N1 virus was first observed to jump from chickens to humans, infecting 18 people and killing six. Hong Kong ordered its entire poultry population, estimated at 1.6 million birds, destroyed within three days.

 

A more recent chain of poultry outbreaks began in South Korea in 2003 and spread over the years to 61 countries in Asia, Africa and Europe.

 

To cause a pandemic, a virus must be able to both infect humans and spread readily from person to person. The currently circulating H5N1 strain does neither well.

 

The total number of verified human cases since the 2003 outbreak is 391, of whom 247 died. The Hong Kong poultry outbreak in December is significant; the government thought it had stamped out H5N1 in the territory after an outbreak in 2003. Since then, Hong Kong has vaccinated poultry against the virus and strictly regulated farm sanitation.

 

The government ordered the slaughter of 80,000 fowl at two large farms after the latest outbreak killed 60 chickens at one of the farms. Investigators are looking for the source of the infection and testing the effectiveness of the vaccine used since 2003 to inoculate chickens, geese and ducks.

 

Hong Kong's vaccine protects poultry against several flu subtypes. But some scientists believe that the H5N1 virus might have mutated to break through the vaccine. Flu viruses change constantly, which is why human vaccines for seasonal flu are modified every year, said Scott P. Layne, a professor of epidemiology and environmental health sciences at at the University of California, Los Angeles.

 

Copyright 2008 Baltimore Sun.

 

 

 

 

 

Law on Flu Vaccinations May Be Tested

 

By Derrick Henry

New York Times

Sunday, January 4, 2009

 

THE state’s new law requiring young children attending licensed pre-school and child care centers to get flu vaccinations will be tested this week when thousands of children return to classrooms and playrooms after the long holiday break.

 

New Jersey, the first state in the nation to require flu shots for young schoolchildren, set a Dec. 31 deadline for parents to obtain flu vaccinations for their children. It was part of a new policy requiring a total of four additional immunizations for schoolchildren over the objections of some parents who worry about possible risks from vaccinations.

 

The requirement applies to children between 6 months and 5 years who are attending licensed day care and preschool programs. State public health experts said that flu shots for young children are important for overall public health.

 

“Stopping flu transmission among kids will stop flu transmission in the community at large,” said Dr. Tina Tan, the state epidemiologist.

 

Health officials said they would not know until after the holiday how many children have met the requirement. The state relies on schools, preschools and day care centers to collect immunization records from parents and then forward the information to the state.

 

Children who have not received the flu vaccine are to be excluded from attending, unless they can provide proof that they are in the process of getting a dose of the vaccine within two weeks after the deadline, the state Health Department said.

 

“If parents are working to get it, they have just a little bit more time,” said Dawn Thomas, a Health Department spokeswoman.

 

Health officials and pediatricians say that vaccinating children against the flu makes sense because children can inadvertently infect each other at school, then carry the infection home and elsewhere.

 

“Children are very effective spreaders of infection-prone secretions,” mucus and saliva, said Dr. Robert W. Tolan, chief of the Division of Allergy, Immunology and Infectious Diseases at the Children’s Hospital at St. Peter’s University Hospital in New Brunswick. “It’s the kids that spread the infections, joyfully, as children do.”

 

Health officials said the flu season usually peaks in January or February each year. Young children are particularly vulnerable to the flu, as are the elderly, pregnant women and people with weakened immune systems.

 

Each year, more than 200,000 people are hospitalized from flu complications and about 36,000 people die from the flu, according to the federal Centers for Disease Control and Prevention. Of those hospitalized, about 20,000 are children. Last year, the C.D.C. received reports that 86 children had died from flu-related complications.

 

There have been about five cases of pediatric flu-related illnesses that required hospitalization this season in New Jersey, Dr. Tan said. A weekly report that tracks influenza in the state characterized influenza activity in mid-December as sporadic.

 

An advisory panel for the Centers for Disease Control and Prevention said that all children ages 6 months to 18 years should receive an annual flu shot.

 

In New Jersey, preschoolers are also required to get a vaccine against the germ that causes pneumonia. That vaccination was due at the beginning of the school year. Sixth graders are required to get a vaccine against meningitis and a booster against tetanus, diphtheria and pertussis. Children who enroll in school after the new year, perhaps from other states or countries, must also be vaccinated.

 

This fall, the New Jersey Coalition for Vaccination Choice held a rally in Trenton that drew hundreds of parents who said they should be the ones to decide if their children need flu shots, not the state.

 

“There’s a huge trust gap between parents and public health officials right now,” said Louise Kuo Habakus, who is a parent and spokeswoman for the New Jersey Coalition for Vaccination Choice. “These are our kids. We’re stakeholders. You have to give us a say in this debate.”

 

Many of these parents say they believe vaccines cause autism, even though multiple studies have found no such link. The New Jersey coalition supports proposed legislation that would provide an exemption for conscientious objectors to mandatory vaccinations for schoolchildren.

 

“The New Jersey Department of Health opposes philosophical exemptions only because influenza can cause destructive and serious illness among children,” Dr. Tan said.

 

Dr. Tolan said that vaccines are a matter of public health.

 

“If you don’t vaccinate your child, you’re putting my child at risk,” he said.

 

Copyright 2008 New York Times.

 

 

 

 

 

Congress strengthens ADA by expanding definition of disability

 

By Steve Lash

Daily Record

Sunday, January 4, 2009

 

In response to what many saw as a weakening of the federal Americans with Disabilities Act by the courts, Congress has broadened the definition of disability as a means to provide greater protection against discrimination for employees and job applicants. The changes went into effect Jan. 1.

 

For employers, these changes mean they should presume — even more so than they had before — that an employee’s or job applicant’s claim of being disabled is correct. As a result, companies must be even more willing and prepared to design their workplaces to accommodate the disability as long as the accommodation, in the words of the law, would not impose an “undue hardship” on the employer, said attorneys who represent companies and employees in ADA litigation.

 

“Fundamentally, this [change to the ADA] puts the burden on employers to focus less on whether an employee is disabled” and more on providing an accommodation, said Bethesda attorney Richard G. Vernon, who defends companies involved in ADA litigation. “You start with the rebuttable presumption that this is a disability.”

 

Examples of these accommodations include ramps for workers who use wheelchairs and assistive listening devices for employees who are hearing impaired.

 

This advice should not be new for employers, who have been willing whenever feasible to accommodate their employees’ disabilities for the nearly 20 years since the ADA was enacted in 1990, added Vernon, who chairs the employment and labor group at Lerch, Early & Brewer Chtd. in Bethesda.

 

Employment-law attorney Abbey G. Hairston, who represents both employers and employees, predicted that the expanded definition of disability will mean that fewer ADA claims will be terminated at the summary-judgment stage. Prior to the recent changes, employers often argued successfully before trial that the plaintiff’s asserted infirmity did not qualify as a disability under the law, Hairston said.

 

“It’s going to result in more plaintiffs prevailing on their claims,” said Hairston, a partner at the Thatcher Law Firm in Greenbelt.

 

Strict interpretation

 

The ADA statute has, since its July 26, 1992 effective date, prohibited employers from discriminating against employees and job applicants with a physical or mental impairment that “substantially limits” a “major life activity,” such as breathing, seeing, hearing or walking.

 

Congress, with strong bipartisan support, expanded the law’s scope in response to U.S. Supreme Court decisions that sponsors of the measure said limited the intended reach of the ADA.

 

The high court, for example, ruled in 2002 that the ADA’s terms “substantially limits” and “major life activity” must be “interpreted strictly to create a demanding standard for qualifying as disabled.”

 

The court, in Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, struck down the claim of an automobile assembly line worker with carpal tunnel syndrome that her employer must make accommodations for her disability. The court said that carpal tunnel syndrome, which causes burning, tingling or itching numbness in the hands, did not qualify as a disability because it did not prevent Ella Williams from performing tasks of “central importance to most people’s daily lives,” such as household chores, bathing and brushing one’s teeth.

 

In response, the ADA Amendments Act now states that “an impairment that substantially limits one major life activity need not limit other major life activities in order to be considered a disability.”

 

Expanded list

 

Under the changes that went into effect Jan. 1, the list of major life activities has been expanded to include “major bodily functions,” including digestion, excretion and reproduction.

 

An employee or applicant is now also considered disabled if his or her disability is episodic or in remission but would limit a major life activity when active, such as a person prone to seizures. The amendments to the ADA also clarify that a person is disabled even if the disability can be mitigated through medication, prosthetic limbs or hearing aids.

 

But a visually impaired person is not considered disabled, even under the amended law, if his or her impairment can be corrected with corrective lenses.

 

In Sutton v. United Air Lines Inc., the Supreme Court in 1999 struck down the claim of twin sisters who claimed that the airline violated the ADA when it refused to hire them as pilots because their uncorrected vision did not meet the minimum standard of 20/100. Because their vision could be corrected by wearing eyeglasses or contact lenses, the court held that Karen Sutton and Kimberly Hinton were not substantially limited in the major life activity of seeing and thus were not disabled, the court held.

 

“Looking at the act as a whole, it is apparent that if a person is taking measures to correct for, or mitigate, a physical or mental impairment, the effects of those measures — both positive and negative — must be taken into account when judging whether that person is ‘substantially limited’ in a major life activity and thus ‘disabled’ under the act,” wrote the court.

 

The ADA Amendments Act states that the court’s interpretation was too narrow and that the determination of whether someone has a disability that substantially limits a major life function must be based on how that person is in the absence of any mitigating measures, such as medication or assistive devices.

 

Though the Sutton decision prompted them to change the ADA, federal lawmakers ultimately agreed with the court on the issue of nearsightedness. In a note of legislative irony, the amended ADA reasserts that vision which can be corrected with ordinary eyeglasses or contact lenses is not considered a disability under the new law.

 

The changes to the ADA also expand the law’s provision banning discrimination against employees and job applicants who are “regarded as” disabled due to an actual or perceived impairment, even when they do not claim to be disabled. The amended law states that the regarded-as provision will be interpreted broadly to include all disabilities “whether or not the impairment limits or is perceived to limit a major life activity.”

 

A sobering effect

 

Baltimore lawyer Stephanie D. Kinder, who trains employers on ADA compliance, said the changes in the law will have a sobering effect on companies. Employers will have to focus from the outset on accommodating disabilities rather than questioning them, she said.

 

“They [companies] are going to have to make sure their managers and their frontline supervisors are trained on these issues,” added Kinder, a solo practitioner.

 

Hairston agreed that the changes to the ADA will compel employers to accept an employee’s claim of having a disability and focus even more on how the company can accommodate the worker. As a result, discussions among supervisors, corporate personnel departments and the employee will improve as all three will concentrate more on accommodating the disability rather than feuding over whether the infirmity qualifies as a disability under the law, Hairston said.

 

“That is always the weak link,” Hairston said of the often-frayed communication among the three entities regarding whether the employee’s impairment was a disability. The asserted disability “has to be addressed” under the ADA amendments, she added.

 

Copyright 2008 Daily Record.

 

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