NEWS

Birth defects and pollution: Study on IBM out this week

Tom Wilber
@wilberwrites

When a federal study on pollution’s relationship to birth defects in Endicott is released this week, it will be packed with research terms such as "risk factors," "statistical significance" and others reflecting the tools of epidemiology.

Like the researchers, former Endicott residents Tiah and Kevin Every are drawn to the same health mystery — but their quest for answers is more personal.

Their son, Deron, was born in 2003 with a malformed heart requiring open heart surgery as an infant. At 12, he survived a heart attack, a stroke and more major operations.

The Everys plan to be in the audience at a community meeting Thursday to hear a team of federal scientists report results of a long-awaited study addressing a pressing question: Are women who worked at a factory in the heart of Endicott more likely to give birth to babies with heart defects?

"I thank God for the opportunity to raise him,”  Kevin Every says of his son Deron.

Far-reaching implications

Findings from the study focus on Endicott, but they could have a national impact on research examining the relationship between birth defects and pollution from trichloroethylene (TCE), an industrial solvent broadly used by a generation of manufacturing nationwide.

Statewide, hundreds of sites with some degree of contamination with TCE have been identified over the years, according to publicly available data from the state Department of Environmental Conservation. Endicott is one of many sites that have risen to the point where officials investigated concerns about health impacts.

The most egregious case in the Rochester area involved a relatively small TCE release from a Xerox Corp. manufacturing facility in Webster that was discovered in 1984. The private wells of three families that lived across Salt Road from the spill were contaminated. Two families sued, and had medical experts prepared to testify that the tainted well water and air releases of the chemical caused neurological problems and cancer in one teenage resident. Xerox disputed the link but settled the suits for $4.75 million in 1988.

At least three studies have looked at the impact of a 35,000-gallon TCE spill during a 1970 train derailment in Le Roy, Genesee County. Dozens of people drank well water laced with TCE for years, and others inhaled vapors that infiltrated basements. Two studies in the 1990s documented no health impact. Results of a third are pending.

The revelation in 2007 that TCE had contaminated drinking water in parts of the town of Victor triggered a trio of health studies. One of them found an unusually high number of cases of a particular kind of brain cancer among people in the area, but concluded there was no known connection between the cancers and TCE exposure. The other studies found no discernible health impacts.

With research led by the National Institution of Occupational Safety and Health, the birth defect study due this week is the latest in a $3.2 million series of investigations into the possible health impacts of TCE pollution, which affects thousands of former industrial sites in the United States.

The chemical was widely used by IBM Corp. at the Endicott factory, birthplace of IBM’s micro-electronics business.

More than 70,000 gallons of TCE  and other solvents were spilled or dumped into the ground, creating a chemical plume reaching under the neighborhood next to the factory where the Everys lived when Tiah was pregnant with Deron.

Deron Every enjoys ramen noodles inside his his family's Endwell home.

“This is about Deron and our family, but it’s bigger,” said Kevin Every. “It’s bigger than Endicott and it’s bigger than Broome County. It’s happening around the state and the nation.”

Although TCE was the cleaning agent of choice for products from printed circuit boards to tanks, the chemical is a pernicious pollutant when dumped on the ground — sinking into water tables, sticking to soil, producing fumes and lasting indefinitely.

Only recently, however, are scientists fully understanding its potency as an agent for cancer and birth defects.

High-profile TCE cleanup sites aren't hard to find. In addition to IBM’s birthplace in Endicott, TCE cleanups have been ongoing at Camp Lejeune in North Carolina and Google’s headquarters in Mountain View, California. But TCE also affects untold former locations of small businesses because the pollution has gone undocumented.

The chemical's use in the manufacturing golden age was so ubiquitous and its impacts so lasting that it’s hard to know where it might turn up 50 or 75 years later, long after factories have closed and records have been lost to time.

TCE is found in at least 1,045 of the 1,699 federal Superfund sites on the National Priorities List. The number is likely to increase as more sites are evaluated for TCE, according to one federal report.

Tens of thousands more sites are listed on hazardous waste registries kept by states and various government agencies, with more than 100 tallied in Los Angeles alone.

Timeline: Endicott's TCE dilemma

IBM a prime candidate

One reason the former IBM plant in Endicott has become the focal point of federal research is because IBM has documented the history and extent of TCE as a pollutant. IBM also maintains a detailed and comprehensive set of employee records well-suited for such research projects.

Deron Every takes in some fresh air with his father, Kevin.

The IBM worker study, as it is informally known, examined records for 35,000 workers employed at the plant from 1969 to 2001, including people who had worked at the site before TCE was phased out. Using this as a starting point, researchers were able to check the subject’s mortality and birth outcomes using records filed with New York state agencies.

Federal officials are scheduled to explain results of the study to a community group at 10 a.m. Thursday in the Endicott library, a day after they are published in a scientific journal.

Sharon Silver, a researcher with the National Institute of Occupational Safety and Health involved in the study, declined to name the journal or comment on the study prior to publication.

“This practice has been adopted to ensure no interference with the journals,” she said in an email. “Any interviews, etc. will be scheduled after all stakeholders are briefed.”

The birth study — originally scheduled for release in late 2014 — was reviewed by officials from IBM, the International Chemical Workers Union and the Agency for Toxic Substances and Disease Registry (ATSDR), an arm of the federal Centers for Disease Control and Prevention.

Only those directly involved in conducting or reviewing the study know the results. Findings may be definitive or inconclusive. But if they carry the weight of previous studies, they are a potential bellwether for TCE policy, a complex and far-reaching national environmental issue.

A developing body of science pointing to the toxicity of TCE has already prompted officials to lower exposure thresholds once deemed acceptable while reopening investigations of more than 400 TCE sites statewide.

Much of what scientists have learned has been from the Endicott pollution.

Although TCE pollution was first discovered at the former IBM plant and adjoining neighborhoods in 1979,  health officials thought it was trapped in the ground and harmless. Risks from exposure largely were dismissed until 2002, when tests showed the solvent creates toxic fumes rising from polluted soil and water tables. Through a process known as vapor intrusion, it wafted into basements, crawl spaces and ultimately into living spaces.

Deron Every with father, Kevin Every

With the discovery of the exposure came a demand for answers. State and federal officials responded with studies.

The first, released in 2005 by the New York State Department of Health, documented at least 15 cases of infants born with rare cardiac heart defects over a 17-year period in a polluted Endicott neighborhood of about 2,600 people — a number more than double the norm. While the study did not make a causal relationship between exposure and disease, it found a “statistically significant” rate of birth defects, as well as kidney and testicular cancers.

Garlock fined $100,000 for pollution lapses

A family's struggle

The story of Deron, now a loquacious adolescent, is part of the quest to understand the public-health legacy of TCE pollution. Tiah didn’t work at the IBM plant, but she was among those unknowingly exposed when living over the subterranean plume of solvents while pregnant with Deron.

While scientists speak of associations between exposure and disease in the sometimes vague language of statistical probability, both Tiah and Kevin feel certain Deron’s illness was preventable.

“I never would have moved into that apartment,” Kevin Every said. “This would have never happened to Deron.”

In 2003, when Deron was 20 months old, he bore a thick, purple scar where, days after his birth, surgeons separated his tiny rib cage to repair the arteries to his heart, which were reversed.

"We thought he was a healthy baby," Kevin Every said at the time, recalling the day of his delivery and the subsequent emergency surgery. "I was numb. I didn't understand what was happening. No way did I think it was something that would affect him and us for the rest of our lives."

The Everys moved from their apartment on Tracy Street soon after Deron was born and they learned about the pollution.

Ten years later, Deron bears scars from additional surgeries and has had several brushes with death. Though harrowing, the setbacks have not affected his temperament.

Now a curious and outgoing youth, Deron is the type of young man who wants to be first to the door of their Endwell home when the doorbell rings.

He comes from an athletic family, with older brothers and sisters who have excelled at football and softball. He will speak at length about the sport he loves: soccer. He does not mention that he is not allowed to play. Even slight dehydration can be instantly fatal.

Deron Every does some four-wheelin' in the driveway of his house. Every can remain outside only for short periods, because even slight dehydration can be fatal.

Yet Deron is very much a player. Moreover, he’s a survivor. He swims for therapy. Smiling warmly, he shows off how he is regaining movement in his left arm after the stroke he suffered when he was 8.

“I was playing cards with my sister,” he says matter-of-factly. “I wanted some candy and I got up to get it. Then I fell. I was scared.”

The stroke came several days after he suffered a heart attack, when the household was alive with the excitement of Halloween. Deron collapsed near the bottom of the stairs.

“He was flat-lined,” Kevin recalled. “He was gone.”

His older sister, with some nursing experience, revived him with CPR while his father dialed 911.

The Everys later learned the stroke was caused by a blood clot that broke free from his heart and moved to his brain. Surgeons successfully removed the clot with yet another surgery. Deron continues to recover. 

Deron Every plays "Minecraft" on his Playstation 3 using only his right hand, as he is slowly regaining movement in his left after suffering a stroke.

Tiah Every, a teacher's aid at the Union-Endicott district with three children at home and a new granddaughter across the street, has little time to dwell on the past. But yes, there are regrets, she said.

“What if we knew?” she mused. “What if we didn't move there...? It's all in hindsight. We can't do anything about it. We don't have the voice and we don't have the money. It makes me mad.”

Todd Martin, a spokesman for IBM, had no comment on the study prior to publication. Martin has said previously there is no scientific evidence the Endicott pollution caused illnesses.

Despite the Everys' conviction that Deron’s heart defect was caused by TCE exposure, many variables are at play and few answers.

Nearly one in 100 babies are born with some sort of heart deformity. They range from murmurs and leaky valves to transposed arteries and missing chambers. Though the prevalence varies by type of defect, about 25 percent of congenital heart defects are critical, meaning they require surgery or other emergency measures.

The burden of legal proof that TCE caused a particular illness in such cases is high. Consequently, the Everys and some 450 other Endicott residents claiming health and property damages from TCE exposure agreed to settle the claims after a seven-year lawsuit never made it to trial.

Deron Every has appetite for ramen noodles.

Although the settlement terms are undisclosed, documents obtained by the Press & Sun-Bulletin show IBM agreed to pay a total of $13.4 million to plaintiffs in 2015.

Absent a trial to bring all the unreported facts and expert testimony about the pollution and its consequences into the public eye, no one can say as a matter of legal record whether any particular illness was a result of TCE exposure, or simply an unfortunate and random occurrence.

Toxic cleanup begins at Le Roy site — 45 years later

Investigations continue

However, a growing body of science shows risks of TCE exposure to be greater than once thought.

Prompted by findings of people living over the Endicott plume, federal officials embarked an ambitious study of the health of people working there.

Published by the American Journal of Industrial Medicine in 2014, the first part of the study found people who worked at the Endicott facility had relatively high deaths rates from non-Hodgkin’s lymphoma; mesothelioma; and pleural, rectal and testicular cancers.

The study also found a “statistically significant relation” between exposure to TCE and deaths from nervous system diseases. A relationship also was found between exposure to TCE and deaths from a certain type of leukemia.

As researchers compiled data for the IBM worker study, the U.S. Environmental Protection Agency released an assessment recognizing the chemical’s danger as a carcinogen and toxicant. The 2014 report cites findings of the residential study in Endicott as well as a burgeoning body of literature associating TCE with illnesses in animal studies and occupational exposure scenarios.

Just how much exposure is dangerous remains a controversial topic. Levels that might not affect one person could make another seriously ill. The birth defect findings in Endicott, though focused on exposure in homes, raised questions relevant to the workplace.

Because cancer is mostly a result of chronic exposure to a harmful agent — cigarette smoke, radon or TCE, for example — risks are typically factored in exposure scenarios over a lifetime. Exposure to TCE at work, where people typically spend fewer hours than at home for only a part of their lives, was once considered less risky than chronic exposure to low levels in homes.

But the thinking has changed for pregnant women. The exposure window for birth defects is something less than nine months, with risks especially high in the first trimester. This means a brief encounter with TCE fumes, maybe over days, considered insignificant to most poses hazards for a pregnant women.

Citing risks detailed in the EPA health assessment, the New York State Department of Health last August lowered its guideline for acceptable TCE exposure in both homes and the workplace from 5 micrograms per cubic meter to 2.

Meanwhile, work continues at the former IBM site, now owned by Huron Real Estate Associates, to eliminate exposure possibilities. TCE has been phased out, and a 35-year cleanup effort by IBM has reduced levels of solvent in the ground. Cleanup continues at the site, including modification to heating and air conditioning systems to prevent fumes from entering buildings through the ground.

Based on the 2005 and 2011 tests, health officials concluded that risks from TCE exposure on the campus were “low,” according to reports filed several years ago. That means officials do “not expect to be able to associate health effects” from exposure.

Still, after adopting a tighter safety threshold in August, the state Department of Environmental Conservation ordered new tests at the Huron Campus to determine the effectiveness of remediation measures. Results are expected later this year.

Huron President Chris Pelto said he is confident tests will show the cleanup efforts at the campus are successful.  “We have no reason to believe there are added risks which have not been previously vetted,” he said in a recent email.

After officials discovered the vapor intrusion problem at the IBM campus in 2003, New York reopened its 431 documented TCE cases statewide. These include 60 in Region Seven, a nine-county area encompassing parts of the Southern Tier, the Finger Lakes Region and the Syracuse area. Sixty sites exist in the 11-county region around Rochester and 50 in the six-county region around Buffalo.

Similar scenarios playing out in other states reflect a reduced comfort level with TCE exposure.

The Massachusetts Department of Environmental Protection is reopening investigations into about 1,000 TCE sites previously closed after being assessed under an older TCE protocol. The decision came after a preliminary review suggested at least 200 sites may present significant indoor air pollution.

Lenny Siegel, executive director of the Center for Public Environmental Oversight, serves as a liaison with federal and state governments shaping policy and guidelines in communities polluted with trichloroethylene. He has been following the evolution of TCE policy over the last 12 years, since the discovery of vapor intrusion in Endicott.

Siegel, from the Silicon Valley area of California, has characterized the Endicott site as the poster child for TCE pollution, and cleanup efforts by IBM and the state Department of Environmental Conservation a “model for the country.”

But more needs to be done nationwide, he said, in gauging short-term exposure scenarios — the type associated with birth defects. Because TCE levels fluctuate with weather, hydrology and other environmental factors, TCE lurking in the ground may be gone one day and there the next in buildings.

“Vapor sampling strategies do not yet recognize that short-term risk,” Siegel said. “More frequent or even continuous sampling should be conducted. … If the new Endicott study confirms the link between TCE and birth defects, agencies should move quickly.”

There is no telling if the study of the former IBM workers will support a connection between TCE exposure and birth defects cited by the EPA in previous studies.

If it does not, it will not change Kevin Every’s conviction TCE caused his son's illness, and there are more Deron’s out there who need to be spared unknowing exposure to TCE.

“We are all connected to this problem,” he said. “Even people who think that it’s not their problem.”

The personal and emotional hardships aside, Kevin points to the extra help Deron needs at school, the cost of his medical treatment and surgeries and other special needs. “The village is raising Deron,” he said. “That includes taxpayers.”

With five kids, Kevin and Tiah live the timeless parenting conundrum of encouraging their children’s independence while nurturing their growth.

But Deron’s circumstances present a unique challenge. He suffers seizures and other complications that tend to come with little warning. Nourishment and hydration, a battle with any adolescent, are critical.

“At a certain age, you need to let go,” said Kevin. “But with Deron, you also have to keep close watch.” He and Tiah are vigilant of the “million-mile stare” Deron gets, signaling the onset of a seizure.

Through it all, their greatest supporter and role model is Deron.

“People say life is hard. And it is,” Kevin said. “You’d never know that if you spoke to Deron for five minutes. To see him go through these things and shrug them off and keep living life with a smile is amazing to me. I thank God for the opportunity to raise him.”

Tom Wilber is a staff writer for the Binghamton Press & Sun-Bulletin. Includes reporting by Democrat and Chronicle staff writer Steve Orr.