Those are the good memories. The bad ones are of Katelynn turning blue and cold without warning and choking on her own blood. The breathless calls to 911. The emergency airlifts to the hospital. The drugs that made her puffy and listless. The machines that breathed for her. And the waiting to find out if she would live or die. The interminable waiting.
The first time Katelynn had "a breathing spell," she was only three weeks old. Merunas was giving her a bottle one night after a trip to the mall when she started choking, threw up her formula, and suddenly stopped breathing. Blood gushed from her nose. Merunas immediately started CPR and, once Katelynn started breathing again, called 911.
The doctors at LakeEast Hospital in Painesville were puzzled. They stabilized her and put her in a helicopter to Rainbow Babies and Childrens Hospital in University Circle. On the way, the baby stopped breathing again and turned blue. Again, she was revived.
At first, the doctors thought she had pneumonia, Christina says. Then they realized her lungs were bleeding.
"They put her on a ventilator," she says. "We didn't get to see her until 6 a.m. She looked dead. She looked completely lifeless."
At Rainbow, beside themselves with fear, Christina and Merunas turned to pediatric pulmonologist Dorr Dearborn. A slight, intense man with a neatly trimmed beard and seemingly impenetrable seriousness, Dearborn had already achieved national prominence for diagnosing, treating, and studying babies like their daughter. He told them she suffered from a rare disorder--unexplained pulmonary hemosiderosis--that had afflicted more than two dozen infants in the Cleveland area since 1993. The disease causes the capillaries in a baby's lungs to rupture and the lungs to fill with blood instead of air.
As with the prior cases he'd seen, Dearborn found that the Dautartases were living in a home that had been damaged recently by flooding. And, as with the other cases, Dearborn told the family he suspected a black mold that grows on water-soaked wood, clothing, and paper products was to blame.
When Katelynn recovered a week later, Christina and the baby moved into her mother's house, which had tested mold-free. But soon Katelynn became sick again, and she was airlifted to Rainbow, where she stayed for two weeks. When she was released, the family moved in with Merunas's brother and sister-in-law. But the same thing happened.
Katelynn's last breathing spell occurred on the day after she turned four months old. Katelynn's aunt, who was babysitting, noticed the baby was sleeping later than usual. When she checked the crib, she saw blood on the sheet under Katelynn's head.
Christina received the call at work at about 10:45 a.m. She rushed to LakeEast Hospital, arriving just as the ambulance was pulling into the driveway. She saw Katelynn for only an instant before the paramedics whisked her to the ER.
"She was white with black eyes," Christina says. "I knew she wasn't going to make it. She had been through so much. I just didn't think she could live through any more."
Katelynn was pronounced dead at 11:30 a.m.
Christina remembers how the doctor met her outside the emergency room, fumbling for the right words and fighting back tears.
"It was just like on TV," she says. "The whole family was there, about seven to nine people in that room. I told the doctor, 'Would you just tell me?'''
When the dreaded words were finally spoken, Christina barreled past him into the room where he had tried to revive Katelynn. She watched a nurse wrap Katelynn in a blanket. Because the couple had her cremated, the blanket-wrapped bundle is the last image Christina has of their daughter.
Christina keeps Katelynn's memory close, wearing a silver locket with the baby's picture in it around her neck. She and Merunas, who are now getting divorced, would have celebrated Katelynn's second birthday on Saturday.
"Our lives," Christina says, "have basically been destroyed."
Convinced the black mold killed their daughter, Christina and Merunas want to do whatever they can to stop it from killing more babies. They and their family have relived her death countless times in interviews with local and national news media, from The News-Herald to The Learning Channel to Hard Copy.
"Every person I meet, I say, 'Have you heard about [black mold]?'" Merunas says. "You go out on the street, and everyone knows about AIDS. Everyone should know about this, too."
It was exactly this sentiment that prompted public health officials in 1995 to tell Clevelanders a potentially deadly mold could be growing in their homes. The Centers for Disease Control and Prevention (CDC), the nation's first line of defense against epidemics, spearheaded the investigation of the local outbreak, focusing on ten infants who came down with the rare disease in Cleveland between January 1993 and December 1994.
When the CDC revealed the supposed link of pulmonary hemosiderosis to black mold in the Morbidity and Mortality Weekly Report in January 1997, a virtual media frenzy descended on the city. The most frequent stars--Dearborn and former CDC epidemiologist Ruth Etzel--were usually careful to note that the link was purely epidemiologic: Their hastily conducted study had found an association between the black mold Stachybotrys chartarum, also known as Stachybotrys atra, and the infant bleeding-lung disease; it did not find a cause-and-effect relationship. To confirm such a link, scientists like Dearborn would need to prove the mold caused the illness in laboratory research or show evidence of mold spores or toxins in the sick babies.
But those comments often didn't appear until near the end of newspaper stories--and sometimes not at all in broadcast reports. As far as the media--and ultimately the public--were concerned, scientists discovered what sickened and killed the Cleveland infants. Mystery solved.
Two years later, however, it is clear the mystery is not solved. Researchers are now questioning the methodology of the Cleveland study and its conclusions. The CDC has just completed an internal review of the study that it isn't talking about, distanced itself from Dearborn's research, and downplayed the mold-illness connection in statements to the press since 1997.
One CDC medical epidemiologist, Dr. Roy Baron, went so far as to tell a Florida reporter in September that the CDC is not convinced of a connection between the mold and any illnesses other than allergies. "That's part of the problem," he told a reporter at The Ledger in Lakeland, Florida; "We don't really know if it's affecting us."
In the meantime, while science catches up with hype, babies like Katelynn Dautartas are still getting sick in Cleveland with the strange bleeding-lung disease. The illness has sickened 39 Cleveland-area infants, killing twelve of them. While the CDC is in retreat, and the national media have gone home, one question remains: What's killing these babies?
Tracking a Killer
Dr. Dearborn's office is unexpectedly small for a nationally recognized medical detective. It's crammed with books and tucked away on the third floor of Rainbow Hospital in the pediatric pulmonary division, where he is associate chief. Dearborn has been interviewed so many times about Stachybotrys, he has no trouble answering questions confidently while quietly lunching at his desk.
Dearborn found himself on the brink of this medical drama in November 1994, when he treated three babies with the rare bleeding-lung disease on the same day. A fourth baby came into the hospital the next night. After checking the hospital records, Dearborn realized several more had been admitted since January 1993, bringing the total number to eight.
That made the incidence rate in Cleveland the highest in the world. Seeing so many cases in one city--all clustered within a six-mile radius of Rainbow Hospital--convinced Dearborn that he had an epidemic on his hands.
"I knew [the disease] should only affect one in four million," Dearborn says. "So I called the CDC."
Etzel, the CDC's former chief of air pollution and respiratory health, was on a flight to Cleveland the next day. Dearborn saw two more cases in December, which brought the total number of babies to ten. Records showed that some of the infants had improved in the hospital and been sent home, only to return after suffering subsequent bleeding episodes. This led the researchers to suspect an environmental problem in the home.
Affected families were each asked 240 questions about child-care practices, parental histories, and potential environmental exposures. Investigators took inventories of household foods and health-care products, descriptions of structural defects and heating and cooling systems of the homes, and animal or chemical exposures, including pesticides.
For every case infant, three healthy infants of about the same age and living in the same geographic area were selected for study as a control group. Almost all case and control infants were visited by a CDC physician interviewer, a city or county sanitarian, and a nurse outreach worker.
Researchers found some similarities among the case infants: Nine were male, all were black, none had been breast-fed, and nine were exposed to cigarette smoking at home. Still, the researchers drew a blank as to what could be causing the illness.
Indeed, if it were not for Etzel's chance visit with a Brazilian epidemiologist friend in Atlanta over the Thanksgiving holiday, investigators may have never pinpointed the black mold Stachybotrys as the possible cause, Etzel says. The Brazilian told Etzel she vaguely recalled hearing a lecture about a similar disease that afflicted infants in her country after they were exposed to mycotoxins (toxins produced by fungi). Later, the friend told Etzel she couldn't find any additional information about the lecture. But the idea that mold was to blame was already set in motion and gaining speed.
Etzel, who had spent the rest of the weekend in the library researching mycotoxins, turned up evidence that Stachybotrys had caused hemorrhaging in farm animals in Europe, and "a lightbulb went off." She returned to Cleveland with a mycologist who found Stachybotrys in five case homes. Dearborn and Etzel then ordered a more extensive environmental review, including air samples from all the case and control homes. Investigators found evidence of black mold close to furnaces, which likely distributed the spores throughout the houses of the case infants. The excessive rainfall in the summer of 1994 and recurrent plumbing problems contributed to the water damage sustained by some of the case homes, creating a favorable environment for Stachybotrys growth.
Investigators discovered that all case infants lived in homes older than sixty years, all of which had recent water damage. They found the case infants were more likely to live in homes with larger quantities of Stachybotrys chartarum and other molds than were the control infants. Dearborn hypothesized that the cigarette smoke infants were exposed to in the home could have been a stress factor that ultimately caused them to bleed.
Driven by concern for the public health and leaks to the press, Dearborn and Etzel went public with their findings in early 1995--before they went to the CDC or their peers in the medical journals, as is standard practice for researchers. Neither regrets it.
"We're both pediatricians," Etzel says. "Prevention has to be the main goal. We're not politicians."
From there, the evidence seemed to mount. In the spring of 1995, Dearborn asked the Cuyahoga County coroner to review autopsies of all babies who had died between 1993 and 1995. Out of 117 infant deaths originally attributed to Sudden Infant Death Syndrome, nine had exhibited signs of major pulmonary bleeding before death. In six instances, no cause for the bleeding had been identified. Like the ten case infants, all lived on Cleveland's East Side.
In August 1995, Dearborn and Etzel made a presentation to the CDC in which they revealed to a surprised and skeptical audience of scientists that a common black mold was the likely culprit. But, by the time the CDC published its results in 1997, the idea was easily embraced by a fearful public desperate for answers. Local media characterized Dearborn as a hero and reported that other scientists had started referring to Stachybotrys chartarum as "Dr. Dearborn's fungus."
Dearborn says the experience changed his life. He abandoned a productive research program in cystic fibrosis and now spends about 50 percent of his time researching the bleeding-lung disease. Whenever an infant is admitted to a Cleveland hospital with unexplained bleeding in the lungs, he rushes to the scene. Dearborn has become the expert, but not the know-it-all. He is keenly aware of how much more he still needs to figure out and explain.
"All we've done," he says, "is open up a can of worms."
The Skeptics Surface
When wet, Stachybotrys chartarum appears slimy and black, possibly with white edges. It looks like any black mildew that grows in wet places, but unlike the common mold that grows on shower tiles, Stachybotrys requires water-soaked cellulose material, such as wood and paper products, to thrive. Some strains produce toxins, called trichothecenes, which are highly dangerous to humans and have been used to produce chemical and biological weapons.
The toxins can be present in the microscopic Stachybotrys spores, which can become airborne. Once inhaled, the toxins are thought to attack the immune system. Studies have shown that adults who have had chronic exposure to Stachybotrys have reported a variety of maladies, including flu symptoms, dermatitis, and fatigue. The effect on infants, as suggested by the Cleveland study, seems much more severe, because their lungs are still developing. The Stachybotrys toxins may disrupt the development of the capillary walls, enabling any kind of stress factor, such as tobacco smoke or even a simple cough, to cause the capillaries to rupture and the lungs to bleed.
Finding a baby in the grip of hemosiderosis is an experience from which parents never fully recover.
One day in 1996, Parma resident Letisha Makaryk found her six-week-old son, Brian, slumped in his car seat--unresponsive, blue, and gurgling. Blood was coming out of his nose, and his eyes were rolled back in their sockets.
"It was startling," she recalls. "They were afraid he was going to [stop breathing] in the ambulance, and they kept rubbing his sternum. I think they thought I had abused him. It was very nerve-racking. [The paramedics] kept asking questions like 'Did you drop him?'"
At Parma Community General Hospital, Makaryk, a nurse, remembered watching something on television about the bleeding-lung disease and wondered if that was the cause. But doctors at the local hospital thought Brian had suffered a seizure. After a pediatrician transferred him to Rainbow, she asked if someone there knew about "this bleeding-lung thing."
"They said, 'Dr. Dearborn is on his way,'" she recalls. Brian recovered, and when the Makaryks had their home inspected, Stachybotrys was found in a crawl space in the basement.
As both a researcher and a practicing physician, Dearborn is fully aware of both the clinical and the scientific aspects of this issue. Against charges he has prematurely arrived at the Stachybotrys-hemosiderosis connection, he has a ready defense.
"The analogy I've drawn is that, thirty years ago, the surgeon general told us we would get cancer if we smoked cigarettes," Dearborn says. "It wasn't until last year [that] it became scientific proof. With infants dying, we don't wait thirty years."
Dearborn gets somewhat defensive when reminded about what a number of critics are saying about his work. Chief among them is Ed Light, a certified industrial hygienist from the Washington, D.C. area, who has written extensively about indoor air quality. Light has critically reviewed the data from the Cleveland study and published his comments in trade journals.
In a presentation at Harvard University in June 1997, Light criticized the study in several respects. He noted that the majority of case infants experienced their first lung bleeding before the flooding resulting from the heavy rainfall of August 1994, which would have provided favorable conditions for the mold to grow.
Also, he pointed out, months had elapsed between the onset of the disease and the testing of the homes, without consideration for how conditions in the home might have changed. Air tests were conducted under abnormal conditions (after vacuuming and banging on radiators to stir up more spores than typically would be in the air). And Light pointed out disagreement among microscopists about whether Stachybotrys spores were actually present in air samples.
"The study had so many flaws and jumped to so many conclusions," Light says. "Then it was spread across the country in a real sensationalistic way."
One question, in particular, which researchers could not answer with any degree of certainty, has also become a chief criticism: Stachybotrys is common in water-damaged buildings throughout the country, so why has this cluster of rare, unexplained lung bleeding occurred only in Cleveland?
Dearborn says no one is studying that right now. But he suspects the mold may have caused unexplained lung bleeding in larger numbers here because of chronic water damage caused by flooding, coupled with a type of forced-air heating system common to the area of the outbreak, which distributes air from moldy basements throughout the entire home.
He agrees that this crucial question needs to be answered.
"The agencies that would do it or support it haven't decided to do it yet," he says, referring to the CDC.
Most of Dearborn's critics have been individuals who have evaluated the black-mold theory from afar and challenged him at conferences and in journals. Scott Armour is the exception. A former deputy project director for the Cleveland Division of Environment, Armour questioned the study's methodology while he was coordinating a Stachybotrys remediation project in one of the case homes. He says he was struck by the lack of thorough environmental data, such as a quantification of the toxicity of the Stachybotrys found in the homes. But, he says, his concerns and suggestions were not welcomed.
"They were not open to debate in the early stages of this," he says of the CDC. "Anyone who questioned it was labeled a heretic."
Armour, now a health and safety consultant for Creative Solutions in Mentor, says he questioned Dearborn at a meeting shortly after the study was completed. One aspect of Dearborn's prevention program, which is still being implemented, involves having women who have just given birth fill out a questionnaire that would evaluate whether black mold could be present in their homes. Armour's wife was pregnant at the time, and they lived within the target area for the prevention program. But Armour said there was no way he would allow Dearborn to send inspectors into his home. He said Dearborn had not convinced him that the Stachybotrys alone had caused the infants' lungs to bleed.
"The environmental end isn't there," Armour says. "What are all the factors in the home that cause this illness? We need to be in the field, not just in the lab."
This criticism strikes a nerve with Dearborn. He says additional environmental work was done on thirteen case homes after the first ten, but the CDC did not approve money for additional research needed to support the link between hemosiderosis and Stachybotrys. Also, the technology to measure the toxicity of the Stachybotrys found in the affected infants' homes was not available in 1994, as it is now.
Fungal toxin expert David Miller cautions against "reading tea leaves into [the skeptics'] science." Miller, a professor at Carleton University in Canada, says the dangerous nature of certain Stachybotrys strains is unquestioned. But he admits that he was skeptical when Etzel called him one night in 1994, interrupting his dinner and eager to bounce the Stachybotrys-hemosiderosis link off him. He remembers telling her he thought it was almost impossible for the mold to cause the illnesses. Then he flew to Cleveland and became convinced. He said he was swayed, once he realized how seriously the toxins could affect babies with developing lungs.
"I think the CDC did a good job [with the study]," Miller says. "I don't take it as significant that the CDC isn't down there spending vast quantities of cash, because that's not their job."
He does not so easily dismiss, however, criticism of the Cleveland study published in a letter to the Journal of Occupational and Environmental Medicine in September 1998, in which two CDC scientists echo Light's observations about the Cleveland study's shortcomings.
"It is our personal opinion that there is currently no clear evidence documenting that mycotoxins cause health effects among building occupants," wrote Drs. Elena Page and Douglas Trout of the Hazard Evaluations and Technical Assistance Branch of the National Institute for Occupational Safety and Health in Cincinnati.
Page says the CDC--the organization that just two years earlier warned against Stachybotrys repeatedly in the press--would not let her or Trout elaborate on their personal opinions for this story.
Dearborn had nothing to say for the record about Light or his other critics. But he stands by the integrity of the study. Although it was conducted under rushed conditions, he says it used the best methodology available at the time.
"We had infants who were dying," Dearborn says. "We had a likely causal link. We were urged by the CDC to start a prevention program . . . I've never said this is a solved problem."
Out of the Lab, Into the Courtroom
While Dearborn looks for money and support to prove the connection between the mold and the illness, the ripple effect of the publicity has extended beyond the public-health realm and into the legal arena. The fallout, according to Light, has been astronomical, affecting more than standards of house-cleaning. Lawsuits have resulted in settlements for individuals who were exposed, and possibly sickened, by mold in their homes and workplaces. One Cleveland family, for instance, recently received a settlement from the management company of the apartment building where they lived when their eight-month-old daughter died of pulmonary hemosiderosis.
The family's attorney, George Forbes, says his clients sued for $10 million but settled for $175,000, because the baby died in 1994, before most people knew that the mold was potentially lethal. Since his case was settled, Forbes says, he's talked with five or six other lawyers handling related cases.
"No one had heard about the disease before," he says. "This was the first case. Landlords are on notice now."
Fear of lawsuits has caused schools, libraries, and other buildings across the country to be closed and cleaned, at great expense, when even small traces of Stachybotrys were found. The mold was responsible for closing a branch of the New York City Library in 1997 and chasing the American Red Cross out of its headquarters in Minneapolis earlier this month. Even Dearborn has said he thinks some of the reaction has been excessive.
The public's interest in the potential health risk posed by Stachybotrys seems to be growing. Dearborn regularly takes calls from reporters working on stories about the black mold. Locally, the county board of health fields about fifty calls a month about it, says supervisor Terry Allen.
Dr. Ronald Gots of the International Center for Toxicology and Medicine says the hysteria is unwarranted.
"We've cried mold in a movie theater," he says. "The science was really very weak. There's been a lot of money spent and consciousness raised over little in the way of scientific support."
One of the most troubling aspects of the controversy is the reluctance of the CDC to reveal any information about its review of the Cleveland study or its position on whether it still believes that unexplained pulmonary hemosiderosis is linked to the black mold. Dearborn has seen the review and sent off his response, but he declined to comment. The CDC did not set up interviews with any of its staff experts, despite repeated calls to the agency's press office over a two-week period and discussions with three different spokespeople. Calls to CDC epidemiologist Roy Baron, who is reportedly on the review committee, were not returned. CDC spokesperson Gail Hayes says the organization is still determining which direction it should take on the issue, characterizing it as "not a nationally reportable problem." She also declined to discuss the findings of the review committee.
"We prefer this to be a scientific dialogue, and that it not go to the press," she says.
Given the CDC's prolific use of the press to inform the public of the potentially lethal nature of the Stachybotrys mold two years ago, observers say its unwillingness to comment on the issue now is disturbing indeed.
Etzel, who now chairs the committee on environmental health for the American Academy of Pediatrics, says the CDC's current stance is a major reason why she left the organization. She says she is puzzled by the agency's position, and that "it is one of the great disappointments I've had."
Meanwhile, the CDC has so far rejected Dearborn's requests for additional funding. And last year, it stopped keeping track of unexplained cases of pulmonary hemosiderosis in infants nationwide. (On their own, Dearborn and Etzel have counted 140 cases since 1993.) In February 1998, Dearborn personally took his case to a congressional subcommittee, asking for $3 million for the CDC to fund Stachybotrys research. The request was denied.
Dearborn says he doesn't know if his detractors have anything to do with the CDC's retreat. When asked for possible reasons, he pauses.
"Politics," he says, declining to elaborate.
Mission of Mercy
Oblivious to the controversy engulfing the scientific community, the Dautartases remain convinced that Stachybotrys caused their baby's death. Last month they filed a wrongful-death lawsuit against their former landlord, who, they allege, did not properly clean up after a water pipe burst in their Fairport Harbor apartment, allowing the conditions that enable Stachybotrys growth to persist. They have asked for a judgment of more than $25,000 plus court costs.
Christina says she is disturbed that more families affected by hemosiderosis in Cleveland have not come forward with their stories. She remembers watching a news report about a bleeding-lung disease afflicting infants from poor families on Cleveland's East Side, when she was nine months pregnant, and thinking that it couldn't happen to her baby.
"They said poor and poverty-stricken," she says. "We lived nothing like that."
To Dearborn, babies living in homes contaminated with Stachybotrys--poverty-stricken or not--have become the canaries that miners used to send into the coal mines. If the canaries died, the miners knew it was unsafe. Even though he has yet to scientifically prove that babies could die from black mold, Dearborn believes enough is known to keep more deaths from happening.
Some of Dearborn's efforts to obtain funding to develop the scientific proof have paid off. In 1997 the CDC helped fund a $76,000 grant, along with the National Institute of Environmental Health, for Dearborn to try to reproduce the disease in infant rats. Recently, Dearborn received a five-year, $1.7 million research grant from the National Institutes of Health to extend that research, which could develop a cause-and-effect relationship as well as a better understanding of the disease.
Dearborn is also conducting a prevention program to educate people about how to identify and clean up the mold. He says Cleveland has a good chance at landing a $4 million prevention program grant from the U.S. Department of Housing and Urban Development this year that would help further this initiative.
So far, the prevention program has resulted in inspections of 681 homes out of 3,403 targeted. It could be more, but several hospitals have not cooperated with Dearborn, and new mothers, many of whom are at or below the poverty level, are reluctant to fill out the questionnaires and let inspectors in their homes.
There's been no repeat of the 1993-'94 outbreak. But Dearborn thinks the prevention efforts probably have less to do with it than does the media attention, which helped make people aware of the harmful nature of mold. Then again, it might be something as simple and uncontrollable as lighter rainfalls.
Victims like the Dautartases are so convinced Stachybotrys is the villain in their tragedy that they have made it their personal mission to talk about Katelynn, until the words "black mold" strike the same chord of fear in people's hearts as the word "AIDS." While this endeavor is certainly noble, it may be misguided.
Although inspectors found a good deal of mold in the Dautartases' apartment after Katelynn became ill, they never found Stachybotrys chartarum.
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