In Manhattan, Children Still Battle 9/11-Related Illnesses

The day the Twin Towers crumbled, more than 25,000 kids inhaled toxic substances. Ten years later, many of them are suffering from health problems that still haven't gone away.

Dust from the World Trade Center attacks lies thick on a pair of children's shoes on September 13, 2001 (Mario Tama/Getty)

The evening of September 11, 2001, after the towers fell and a torrent of toxic dust inundated the arteries of downtown New York City, Mariama James returned to her Lower Manhattan home, to a white apartment. "Every inch was covered in dust," she says of her Southbridge towers unit, located just blocks from where the World Trade Center stood that morning. "It was a beautiful day and my windows were wide open," she recalls.

James was 8 1/2 months pregnant at the time. "My children were completely covered in dust, they couldn't escape it," she says of her son and daughter, then 9 and 6 years old. "I swept, I vacuumed, but you couldn't get rid of it, it was everywhere. It's like if you took pounds and pounds of chalk and chopped it up and rolled around in it for four days. ... You know that feeling when you hit two erasers together and breathe it in? This was like sticking the entire eraser down your throat."

9-11 Ten Years LaterTwo years after the attacks her eldest daughter Armani, now 15, started experiencing chronic sinuses infections, ear infections, throat infections, and a persistent cough. Soon after that all three of her children, including her newborn daughter, had a host of health conditions including asthma, chronic bronchitis, and acid reflux. They were seeing a pediatric pulmonologist once a month without fail and were missing school more than any child probably should. At one point, each child was on at least seven different medications.

"I initially came to the conclusion that my kids were sick from 9/11 on my own, but my pediatrician just didn't buy it at all," says James, adding that both of her older children were more of less healthy prior to the attacks. "I still love my pediatrician, but I only go to him for regular annual visits."

All of James' children are now being treated in the pediatric program at the World Trade Center Environmental Health Center, which operates out of Bellevue Hospital in New York City. A study based on the Dept of Health and Mental Hygeine's WTC Health Registry cites that 25,000 children were either living or attending school in Lower Manhattan the day of the attacks, and projects that tens of thousands more "were in the path of the plume of building debris and smoke, close enough to inhale particulates and toxic substances."

Dr. Elizabeth Fiorino, a pediatric pulmonologist who joined the WTCEHC's pediatric program in 2009, says that most common ailments she encounters in patients are upper and lower respiratory conditions, mostly asthma and allergic rhinitis. "We also see acid reflux disease and a variety of behavioral, learning and mental health issues," she says. Fiorino contends that the pediatric program at the Health Center is best equipped to deal with 9/11-related issues because it is "a multidisciplinary program."

During the initial four-hour visit, she says, "we do a full evaluation, with a full history including exposure history. We do pulmonary function tests that same day, which is definitely different from what would occur in a general pediatrician's office, and we also do a full mental health screening." She is quick to note, however, that the pediatric program is "more of a consultative service working with the child's own pediatrician."

Similarly, Terry Miles, the World Trade Environmental Health Center's executive director, classifies the program at large as a specialized expertise service that is not intended to act as a replacement for a child or adult's medical home: "We're not trying to take people away from their community physicians. Rather, there is a certain level of expertise that we've developed because we do what we do. We have learned to understand the cause and effect, the nuances of the difference between 9/11-related asthma and regular asthma, and the more detailed diagnostic procedures that might be called for to address these issues."

Yet for all the expertise and resources available at the Health Center, and the estimated number of children exposed to toxic dust, there is a shockingly small number of children actually utilizing those resources. Just under 80 children are enrolled in the pediatric program. Dr. Fiorino surmises that "there probably isn't as big of an impetus for parents to seek care here [at the pediatric program] as opposed to the adult exposed population, because in New York state we're lucky enough that kids pretty much have universal health care." (The program treats patients free of cost.)

She adds that after the attacks, "pediatricians in the area stepped up. Kids got care in their medical home right after the disaster. Many of the common conditions that at least we're seeing are fairly common conditions in the pediatric population as a whole, and are conditions that a general pediatrician will definitely be comfortable treating."

Many parents also simply don't know that the Center exists. The creation of the World Trade Center Environmental Health Center as we know it today was only announced in 2006, with Mayor Bloomberg funneling $16 million to the city's Health and Hospitals Corporation to expand an already extant WTC clinic at Bellevue. (The announcement of two new Center locations soon followed.)  The Dept of Health and Mental Hygiene only issued its WTC pediatric clinical guidelines in 2009. Miles maintains that simply reaching the lower Manhattan population has been difficult.

"There is a common misconception about what lower Manhattan is," he says. "People don't realize the diversity of the population--socio-economically, culturally. And so it takes a variety of methods to reach those people. We've learned that no one way works. Effective ways have been to work with community organizations, with labor organizations so that they reach out to their communities. Yet even that is met with its own challenges."

The lack of patient inflow is certainly not for lack of trying. "There have been a lot of efforts to reach to these communities. We have been running ad campaigns for the past few years that has worked to bring in hundreds of new patients," says Miles referring to subway posters that asked "Lived there? Worked there? You deserve care," as well as print, radio and television spots that began airing in 2008. "But should it have been thousands," he adds.

Another key to understanding why so few families have come forward to enroll their children in the program may lie in unraveling the psyche of New York City parents. "We've seen 10 different layers of denial come into play when it comes to people's health as it relates to 9/11," says Kimberly Flynn, Executive and co-founder of 9/11 Environmental Action, an activist organization that fought for proper cleanup of affected communities following the attacks, "People don't want to admit they are sick, or admit that their children are sick. They have a hard time tolerating the idea that 9/11 is still with them."

Flynn's organization was instrumental in advocating for the creation of the WTCEHC, and has been in the field working with communities since the attacks. According to Flynn, after the attacks "people on the West Side were very private about their health problems--and yet they were very vocal about the conditions they returned to, about the cleanup."

As a mother, James feels similarly. "No one wants to remotely consider the possibility of their children being chronically ill. ... It's like, if I take my children to the doctor for a 9/11-related condition, even just to be evaluated, I'm admitting the possibility that they could be sick indefinitely into the future, and carry these attacks around inside of them. I think it also has to do with the government itself not recognizing the effects of the attacks on children for a very long time. This lack of recognition helped to maybe falsely comfort some of the parents of the children who may now be facing real 9/11-related health issues."

Flynn agrees wholeheartedly: "The government spent so much time early on saying the air was safe and the dust wasn't a problem that people didn't correlate the symptoms they were experiencing with their WTC exposures. We've seen situations where the symptoms were classic and the onset followed dust exposures fairly quickly, and people still didn't associate the two."

She adds, "For many people the idea that the government would lie to them at a time like that was so unthinkable and created so much anxiety, that people had to defend their denial. We saw fierce arguments break out among school parents, with one side asserting that additional testing needed to occur in the school before the kids could come back and the other side denouncing them as hysterical...we're still learning the truth of what the government knew when they told us everything was fine." Indeed, on September 8, ProPublica posted documents revealing the extent to which the federal government downplayed the health risks of breathing in toxins after the attacks.

According to Miles, the Zadroga legislation calls for calls for 25,000 more participants in the both the responder health program and the survivor program. "Will it grow to that size? I simply don't know." Now, however, "the federal government will be more directly involved in outreach activity and enrollment." Looking to the future, Miles says, "the important message is that there are programs in place to take care of great numbers of people. It's not that the services aren't here, they are. The issue is the challenges in getting people to know that we are in fact here to help them, and for people to realize that it's ok to be sick because of 9/11 and if their health status has changed since 9/11, that they should seek us out."

To the mark the anniversary and in going forward the Center has tweaked the slogan in its ad campaign: "Lived there? Worked there? You still deserve care."