Drowning on Dry Land
Alex coughed all night. It wasn't a loud cough, but a dry, consistent one coming every few minutes. Darleen Scope knows that cough; she knows it can mean weeks in the hospital. So she gave her son a breathing treatment. She hooked a clear plastic mask with a purple rhino nose over Alex's face and turned on the nebulizer. Four hours later she gave him another treatment. But the medicine didn't work. Two-year-old Alex kept coughing.
In the morning Darleen called the asthma clinic at Memorial Hermann Children's Hospital.
Is he breathing rapidly? a nurse asked.
No, Darleen said.
Is his chest retracting?
No, but his nose is running.
They both know that a runny nose is a warning sign of an impending asthma attack. The nurse told Darleen to bring Alex in immediately. The clinic had been through this before with him. Because Darleen didn't think her son was that sick, she didn't call an ambulance. Being without a car, she called a cab instead. Traveling from their one-bedroom apartment near Hobby Airport, the usually playful Alex was lethargic. Then things got worse: His stomach sucked up into his ribs as he strained to breathe.
At the clinic they checked the oxygen level in Alex's blood. It was low, too low. His breathing slowed down, and he was cranky, inconsolable. All he did was cry, and the only person he wanted to touch him was his 20-year-old mother. He tried to breathe but couldn't.
His hands went limp, and his coughs got shallower. His dark brown skin got darker. Everything that should have been soft and pink -- his palms, his lips, the rims of his eyes -- turned bluish-black coal.
Then he stopped breathing.
The physician, Dr. Giuseppe Colasurdo, picked up Alex and started running.
Nationally more than 100,000 asthmatic children, like Alex, are hospitalized each year. Despite new medications, increased prescriptions for antihistamines and reduced pollution in most cities, the childhood death rate due to asthma has doubled in the last 15 years, according to the American Lung Association. And even though their risk for getting asthma is only slightly higher than that of non-Hispanic whites, African-American children are four times more likely to die from asthma. Fortunately, last October Alex was not among them.
In Houston, nine asthmatic children died last year at home or in the emergency rooms at Texas Children's, Memorial Hermann and Ben Taub hospitals. That's three times the number of children who died of HIV in the same places. One asthmatic dies every week in Texas, says Dr. Lynnette Mazur, medical director of general pediatrics at Memorial Hermann Children's Hospital.
"It's a national disgrace that we have so much morbidity and mortality from asthma," says Dr. Lawrence Thorne, of the McGovern Allergy and Asthma Clinic in Bellaire. "It's a mistake on somebody's part almost anytime an asthmatic gets in the hospital."
The number of deaths is alarming because no one should die of asthma. It's a manageable disease. Although there isn't a "cure," treatments can counteract the course of the disease -- and one-fourth of asthmatic kids "grow out of it," since the airways expand and grow with the child. With proper treatment, asthma shouldn't stop kids from playing outside, exercising or attending school.
But proper treatment costs money, and many lower-income parents are uninsured and can't afford the continuous care and medicine to control and prevent attacks. Some parents don't realize their child's cough is something serious. Some overuse and abuse inhalers. Others simply aren't educated in the many environmental triggers that can start an asthma attack.
Asthma attacks children across all socioeconomic levels. Anyone can get it. Not everyone can afford to treat it.
Having an asthma attack is like being strangled. Attacks occur when the lining of the airways gets inflamed, which stimulates the mucus glands (and asthmatics make six times as much mucus). Mucus clogs the airways, then the surrounding muscles tighten, spasm and close the windpipe, so air can't get through. A high-pitched wheezing, asthma's hallmark, is the sound of air forcing its way through bronchial tubes deep in the chest. It's like drowning without water.
"They feel like a little elephant is standing on their chest," Thorne says. "You're having to pull harder to breathe."
Breathing is already difficult for many lower-income asthmatic children whose homes usually lie in polluted areas. Typically they live where land is cheap: near downtown and factories pouring out smoke, sulfur and acid.
Many inner-city parents keep their kids indoors, not just because of the bad air but also because they're scared their children will encounter bigger troubles in the streets. Yet staying inside isn't safe either, since most projects built in the '70s and '80s are "tight buildings" that trap stale air.
"You think pollution's bad outside -- inside is even worse," says Ed McDaniel, an occupational health specialist with the Public Health Environmental Services Department of the Harris County Health Department.
Researchers investigating inner-city dwellings have discovered a host of triggers for attacks: peeling paint, cockroach droppings, roach carcasses and stale secondhand smoke. They've seen mildewed showers, vents covered in mold and dust-coated carpets. Even the psychological stress of being poor can contribute to asthma's severity. Combine that with the usual triggers -- changes in weather, glue, gasoline, viruses, aspirin, paint, perfume, pressed wood, pets, the things every child is exposed to -- and the poor are obviously far more susceptible to asthma.
These triggers have been around for years, yet asthma keeps getting worse. Why are children getting sicker? Why did the Texas Children's Hospital emergency room admit more than 5,150 children with asthma attacks in 1998, twice as many as in 1993?
One theory postulates that the decline of serious illnesses causes underutilized immune systems to overreact to lesser irritants. Another idea is that kids raised on Nintendo and MTV are stuck inside breathing bad air. Others suggest that children in day care get respiratory viruses early on, which leads to asthma. Some studies indicate that breast-feeding prevents asthma and that more working moms are bottle feeding. Researchers also argue that asthma is genetic, yet they don't know how such a widespread genetic breakdown could have happened in the last 20 years.
The only thing they do know is that the numbers are increasing: In 1988 almost seven million Americans had asthma. Now the numbers are close to 15 million, according to the Centers for Disease Control's Asthma Prevention Program.
Nationally, between 5 and 8 percent of kids are asthmatic. Here in Houston, as in other major metropolitan inner cities, the numbers are between 10 and 12 percent, says Dr. Stuart Abramson, associate director for clinical research and health professional education for the Children's Asthma Center at TCH and chair of the regional advisory board of the ALA.
"There is very bad asthma in Houston," concurs Colasurdo. "Very bad."
An estimated 60,000 children under 18 have the chronic respiratory disease in Harris, Fort Bend and Montgomery counties, according to the Houston Chapter of the ALA. Asthma is the number one reason kids miss school and are hospitalized.
One reason for the hospitalizations and chronic absenteeism is that many parents let asthma attacks last too long without treatment.
Working at a nonprofit clinic in the Fourth Ward, Lynnette Mazur saw an asthmatic child who had coughed all weekend. Her mother waited until the girl was breathing so hard that she couldn't eat before she brought her into the clinic Monday evening. Mazur immediately called an ambulance and gave the girl oxygen.
She lived, but Mazur has seen children die because parents thought that the asthma would just go away or that they could treat it at home. Some parents use alternative treatments, such as coffee or tea (which are natural bronchodilators). Many parents simply pray and hope that God will heal their child. Other parents buy their children Chihuahuas, one of the few breeds that can get asthma, Mazur says. They believe that the child's asthma transfers to the dog.
Then there are the parents who rely too heavily on Western medicine. They figure if two puffs of the bronchodilator albuterol work great, then 12 would work even better. What they don't know is that overusing inhalers can be deadly. Albuterol temporarily relieves the symptoms but doesn't treat the disease. It dilates the airways but doesn't decrease inflammation, so the airways can still get plugged. Plus, some over-the-counter inhalers can cause heart attacks if overused.
But even the most diligent and cautious parents may not realize their children have asthma; that's because the disease is still often misdiagnosed for lack of an accurate test. Doctors can measure lung function or X-ray a patient's chest or check oxygen levels in the blood, but there is no simple you-have-asthma blood or urine test. Pediatricians often mistake a child's asthmatic cough for a cold or bronchitis.
Once a child is diagnosed, though, parents sometimes don't understand that they have to give their child the medication every day, no matter how the asthmatic is feeling.
"One of the hard messages to get across is 'This is a chronic disease, even when they're feeling well,' " Abramson says. "A lot of people think asthma should be treated from crisis to crisis."
Asthma's chronic nature can take its toll: Some parents can't afford to take a day off from work and sit in the doctor's office when their kid seems healthy. Or sometimes they don't want to give their kids daily doses of steroids, since some studies indicate steroids stunt children's growth. Or sometimes the steroids don't work.
Recent studies indicate that African-American children may have a genetic resistance to steroid treatments, according to the National Jewish Medical and Research Center in Denver. As African-American children's asthma worsens, their sensitivity to the steroid treatments decreases. They get sick, and standard medicine can't save them.
Darleen Scope has battled Alex's asthma every day since he was four months old. At first Darleen thought he just had a bad cold, but when his stomach started retracting she got scared and rushed him to the emergency room. Her son's severe attacks have taken him to ERs all over Houston; sometimes he stays for a night, sometimes for weeks. The sickness creates an extra financial burden on an already burdened household. Darleen wanted to get a job in December, but she postponed interviews because Alex was sick. Alex needed her more than she needed the money, so she stayed home.
Darleen and her two older brothers grew up in the Almeda Mall area, not far from where she lives now. She dropped out of high school in the tenth grade, got her G.E.D. and five years ago met Alex's father at a Texas Southern University football game. She was living at home with her mother, a licensed vocational nurse, and her father, who is now a welder in Trinidad. Darleen didn't know what she wanted to do with her life. She wanted to go to college, maybe be a nurse like her mom, maybe a pharmacist, maybe a computer programmer; she wasn't sure.
Then she got pregnant.
Darleen and Alex lived with her mom until two years ago, when she and Alex moved in with his daddy. She started community college and began working toward a pharmacy technician degree. She dropped out because she couldn't afford the tuition and the cost of a home health care provider for Alex.
Alex's asthma is so severe that the beginning of an attack for him resembles the final stages for someone with a milder case. She didn't trust a baby-sitter to pay close enough attention to him and give him rescue medicines soon enough. She worried about day care because teachers would be distracted by other students, and he could catch colds from other kids. If Alex gets a cold, he lands back in the hospital.
Plus, when he's very sick, Darleen's the only one that can comfort him, calm him and help him breathe better. She wanted to be there if he needed her.
Darleen plays a large role in keeping Alex healthy: Every day her son leaves the room while she vacuums. She usually steam-cleans the carpets once a week (although her brother's steam-cleaner recently broke). She puts away Alex's stuffed animals and keeps his red plastic chairs and toy trucks out on the balcony since they collect dust, which can trigger an attack. Darleen dusts all the time, and Alex's daddy smokes only outside. (Alex's father didn't want to be identified because as a Toyota dealer, he wants to project an image of success.)
Lately Darleen and Alex have spent their days inside watching talk shows and Disney movies. They're stuck at home since they still don't have wheels and Alex can't stay outside too long. Some days Darleen's bored.
Last month Darleen took a temporary job telemarketing, and she found a baby-sitter for Alex. The woman's son has asthma, so she knows what to watch for. Plus Alex is now old enough to know when he's sick and to ask for his medicine.
Nearly every day Alex tugs on Darleen's hand and says, "Mommy, I need my meds." That's when she puts on the plastic mask and gives him a breathing treatment to open his narrowed airways before they close. He hates getting treatments. Still, if he doesn't need a treatment during the day, Darleen usually gives it to him before bed -- just in case.
Twice a day Alex also takes two puffs of his Flovent inhaler, a steroid to keep down the swelling, and two puffs of Serevent, a bronchodilator, to open his airways. He also takes Zantac for his gastroesophageal reflux, because if the acid from his stomach gets up into his lungs, it could reshape them or corrode his vocal cords. Just like rust filling up a pipe, says his Memorial Hermann Hospital case manager, nurse Christine Lasserre.
If Alex didn't take his cabinet's worth of medicine, his asthma could cause permanent scarring, reshaping and remodeling of his airways. Eventually it could entirely close his lungs.
The costs for keeping Alex's airways open are high. But Darleen has white-coat-wearing guardian angels. If her son is sick in the middle of the night, she has the number to talk directly to a nurse or physician who knows Alex. Memorial Hermann Children's Hospital has a 24-hour-call schedule to eliminate late-night ER visits. Hospital workers give out mattress and pillowcase covers and sometimes medicine, if Alex runs out. They have even given Darleen cab vouchers when she needs a ride. When Darleen's Medicaid stopped, the hospital kept up Alex's immunity-boosting treatments for two months, which cost $1,000 a treatment for medicine alone.
That's cheaper than three weeks in the intensive care unit.
When Alex starts elementary school, he'll face another problem: the schools themselves. Unlike at home, where Alex's mom can constantly monitor the state of her apartment, school environments are uncontrollable. Students carry viruses, carpets carry dust, and the air carries allergens.
Research shows that schools are the best place to identify asthmatics because you don't have to rely on parents making and keeping doctor's appointments. Last year the Houston Independent School District reported that 4,180 students had asthma. Across the country researchers and the ALA have started sending students home with questionnaires on the disease, hoping to find undiagnosed asthmatics.
Researchers with the Partners in Asthma Management project have identified asthmatics in Houston elementary schools and are studying what happens when they receive proper treatment -- and when they don't. A joint effort by the University of Texas-Houston School of Public Health, the Baylor College of Medicine and HISD, the five-year study, funded by the National Institutes of Health, is in its last year of tracking asthma symptoms, absenteeism and grades. The project has brought in physicians such as Stuart Abramson to treat kids at 30 schools while monitoring students at 30 control schools. Since asthma is the number one reason students miss school, program officials want to see if proper medication and care will not only make kids feel better but also help them perform better in the classroom.
As part of the program, the kids tested an asthma-management video game titled Watch, Discover, Think and Act. The CDC-funded game has black and Hispanic characters, and rap music, and can be tailored to each child's asthma triggers and symptoms.
The 18-stage game takes kids through their bedroom, school and inner-city neighborhood. The last level takes them to the castle of Dr. Foulair, who has invented antipollution technology to save the earth's air. The kids have to sneak into the dungeon past a sleeping dragon to get the plans, fighting and eliminating asthma triggers along the way.
The game teaches kids how to handle and control their asthma. It takes away their fear and total dependence on adults.
"We're trying to arm them," says Dr. Ross Shegag, a research associate at Baylor College of Medicine and one of the game's creators. "We're making the child a part of the asthma team."
But there are triggers kids can't control or avoid in a school environment. The Partners researchers did a complete environmental assessment of each school. At some they found dirty air vents and open doors letting in dust and moist, moldy air. Most schools have carpets collecting dust or mold. Few have a nebulizer.
The researchers made suggestions for the schools to use more air-quality-friendly products: Get rid of chalkboards and replace them with dry-erase white boards and unscented markers; put in better, higher-quality air filters; and require custodial crews to use less bleach and more unscented germicides. They also suggested schools buy one breathing machine and multiple disposable mouthpieces.
Some schools took the suggestions, and some didn't, says Shellie Tyrrell, project coordinator for the Partners program. Right now there isn't a law to make them comply. Even when the Toxic Substances Control team investigates schools, or homes, it's only advisory, says Jaye Stanley, the program manager at the Texas Department of Health.
Michele Coakley is another advocate educating asthmatics in area schools. As program administrator for the Houston Chapter of the ALA, Coakley speaks to schoolchildren about asthma. She sees more asthmatic students around Pasadena, Pearland, Clear Lake and near the Ship Channel. At every school she asks asthmatics for a show of hands. At La Porte High School 78 out of 110 students raised their hands.
"It's reaching epidemic proportions," Coakley says.
Coakley teaches the Open Airways in the Schools asthma management program sponsored by the ALA and the American Thoracic Society. She passes out peak-flow meters to measure lung capacity, bottles of bubbles to teach kids belly-breathing exercises, and finger puppets and nonfurry toys that won't collect dust. Students fill out worksheets that teach them how to identify triggers and create an asthma action plan so that they know what to do when they're sick. Each night they have to take their notebooks home and have their parents fill out the same worksheets; the programs are educating the kids and their caretakers.
Over at the Gregory-Lincoln Education Center in the Fourth Ward, nurse Carolyn Cullors is already well versed in asthma management. Now that the weather's colder, five kids come in every day to use one of the school's 11 neatly labeled inhalers, most just before PE.
At the school, where almost every child is black or Hispanic and most of them poor, Cullors has gone from one or two inhalers 11 years ago to a three-inch binder filled with "asthma action plans." It includes who to call and what medicine to give each child when they're sick.
Cullors sees the problems unique to an inner-city school: Kids run out of medicine at home, so they take the school inhaler home and never bring it back. Many parents can afford only one inhaler, which their kids try to bring to school and take home every day. (Kids aren't allowed to carry inhalers on campus because they often let other students take hits.) Or sometimes the medication that students give Cullors is expired.
Cullors had one 12-year-old girl with severe asthma who was living with her dad in a homeless shelter. To treat her asthma, the father just gave her over-the-counter Primatine Mist.
"I had nightmares about her," Cullors says. She talked to the girl's pastor, called Children's Protective Services and made appointments with a free clinic. The father always picked her up and said he'd take his daughter to the doctor, but he never did.
The federal government and other agencies are beginning to hear the wheeze of inner-city asthma. Last year, in the Clinton administration's first agency-wide effort to attack the problem, First Lady Hillary Clinton released a $68 million asthma initiative, "Asthma and the Environment: A Strategy to Protect Children," funded by the Environmental Protection Agency and the Department of Health and Human Services. The money has been divided among school-based intervention and education projects, air-pollution measurement programs and competitive grants to states to identify and treat asthmatic children enrolled in Medicaid.
And the NIH is spending $118 million this year to conduct further research into asthma. Closer to home, the Texas Gulf Coast Asthma Coalition is attempting to reduce the prevalence, morbidity and mortality of the disease. The coalition's aim is to get patients -- especially lower-income, minority patients -- into continuing care and to eliminate emergency room visits and hospital stays.
The coalition is also trying to educate the public. Last May the group held an Asthma Awareness Day at the Museum of Health and Medical Science. About 600 inner-city children and their parents showed up; earlier, the consortium held a screening day in which physicians sat outside Randalls supermarkets. About 250 people showed up, many of whom didn't know they had asthma. Coalition officials plan to hold more screening dates and to lobby for clean-air legislation.
The night he moved to Houston in 1979, Dr. Roosevelt Alcorn witnessed his daughter's first asthma attack. They were staying at the Roadrunner Inn on Main Street because he had to get to the hospital early in the morning for an interview. The pediatrician's 13-year-old daughter started breathing hard and wheezing. He thought it would pass, but it just got worse. So he took her to Texas Children's Hospital's emergency room.
Twenty years later, in the same ER, Alcorn is on call every month and a half as an attending physician treating dozens of asthmatic minority children.
"There's all sorts of horror stories," Alcorn says. "Kids have been brought in almost gone. And sometimes they pull them back, and sometimes they haven't."
Sometimes the children don't even make it to the hospital. Alcorn recalls his former pastor, whose asthmatic daughter was found dead in the hallway. She had a nighttime attack and didn't want to wake her father. She died outside the restroom trying to get to her inhaler.
Alcorn has seen parents who don't have cars or who don't have cars that can make it from the Fifth Ward to the Medical Center. Sometimes they get stuck on the on-ramp by the George R. Brown Convention Center with no cell phone and a sick kid. Others don't have a phone in their house to call 911. Some parents are poor but not poor enough to qualify for Medicaid.
"They die like flies," Alcorn says. "We're losing them here with the best. Most of these kids are within shouting distance of the Medical Center. Think about the kids who aren't that close."
Hispanic asthmatics and their parents face even more barriers to getting treatment. Some don't speak English; some aren't citizens, so they can't qualify for Medicaid; and some parents are so afraid of being deported that even if their child is a citizen, they don't sign them up for Medicaid. That's often why Hispanic asthmatics wind up in the ER: People don't ask for money or Medicaid up front.
But doctors want their patients to avoid ER visits. The retired Alcorn has created the Medical Mobile-Dental Outreach Clinic, a 53foot doctor's office inside an 18-wheeler. Alcorn's clinic goes into poor neighborhoods to do free Medicaid physicals and dental exams, but the physician wants to expand its mission to cover asthma patients. As a result, the mobile clinic plans to assist the CDC-funded project School Asthma Screening and Prevention. The truck, program officials say, will carry a team of researchers to local elementary schools, where they'll do asthma screenings and give out medicine and educational materials. If the parents can't get the kids to the hospital, the breath mobile will bring fresh air to them.
"We've gotta stop 'em before the horse gets out of the barn," Alcorn says. "Once the horse is out of the barn, it's hard to corral him again. Heaven only knows how successful we're gonna be, but we gotta do something."
Alex loves his toy cars, trucks and miniature monster men. He plays in mud, throws pebbles into puddles and runs around the park. But Darleen can't let him go outside too often.
"We don't know what's out there," Darleen says. He went to the park with her brother, and he was fine. He went back the next day and had an attack. She doesn't know if there's something in the air or the trees, but she doesn't want to find out.
"He can't even really play really hard," Darleen says. "He gets laughing really hard and running with the kids, and then he starts coughing."
Alex turned four last month, and as he gets older Darleen worries more about what she's going to do. Alex has to go to school, she says. He has to. But more immediately, she worries about the cold weather triggering an attack. Alex is usually sick around the holidays, she says.
The week before Christmas Alex got sick.
Around 10 p.m. he started sniffling. Then he started coughing. Darleen gave him breathing treatments, but they didn't work.
Around 1 a.m. she called Alex's case manager, nurse Lasserre. Darleen had a few vials of albuterol -- the "rescue" medicine -- but not enough to get him through a full-blown attack. The nurse called in a prescription to an all-night pharmacy and told Darleen to start giving Alex the steroids stored in her kitchen cabinet.
Lasserre wanted to call in some antibiotics, but Darleen couldn't afford them. The mother lay awake listening to Alex cough and worrying that he was headed to the hospital.
The next day, around 10:30 a.m., Lasserre called and said she had some samples of Biaxin. Darleen couldn't get a ride to the clinic, so Lasserre gave them to Darleen's sister-in-law, who works at the hospital. The medicine seemed to work. Alex kept coughing, but not as hard or as often. He felt well enough to want to play. But Darleen popped Mulan in the VCR and tried to get him to lie down.
Alex recovered in time to enjoy Christmas, and he made it through New Year's and his birthday.
"We just hope that as he gets older he'll get stronger," Darleen says. She wants Alex to be a normal boy.
A normal boy who can't play outside.
E-mail Wendy Grossman at wendy.grossman@ houstonpress.com.
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