The parents of Flint, Mich., are the most recent and visible initiates into the world of lead poisoning, a lifelong and life-changing diagnosis.
It is a surprisingly large club. Half a million children are thought to have lead poisoning in the U.S., or 1 in 38. The sources of their poisoning are such things as wall paint before 1978 (when leaded paint was banned), soil contaminated by auto fumes before 1996 (when leaded gasoline was fully eliminated) or, as in Flint, lead that leached into the water supply from improperly treated pipes.
Whatever the origin, the lead makes its way into the bloodstream and then to the brain, where it causes permanent damage. The younger the child the more vulnerable the brain, but beyond that sweeping truth lies a broad swath of possible outcomes. Learning issues? Motor problems? Language delays? Lowered IQ? Tendency toward violence? All are possible. Nothing is certain.
“There are well-documented and convincing links between lead exposure to the young brain and behavior and learning issues later in life,” says Dr. Philip Landrigan, a pediatrician and dean for global health at the Mount Sinai School of Medicine in New York City. Still unclear, however is how much lead and what effect in which children.
“Recently we are learning that lead is toxic at very low levels that we used to think were safe,” Landrigan says. “It is impossible to predict the exact effects in any one child,” meaning all parents can do is intervene early and never know for certain whether the struggles and stumbles in their child’s life are actually due to lead.
Learning issues? Motor problems? Language delays? Lowered IQ? Tendency toward violence? All are possible. Nothing is certain.
“That’s the hardest part,” says Christine McNeil of Laconia, N.H., mother of 18-month-old James Jr., who is at the start of the journey. Her son was diagnosed with high lead levels at his 1-year-old health check six months ago. “We’re doing all the things we can do, and I’m glad for something to do, but we have to wait and see what this means as he grows up.”
Wait — and turn to each other, in the way parents do when they carry the same burden. In that spirit, the McNeils are one of a cluster of families who have shared their lead-laden stories with Yahoo News. Together they illustrate what many Flint parents will face over the coming months, years and decades, long after the public outrage has ebbed and the spotlight has moved on.
Diagnosed eight months ago: James McNeil Jr.
Christine McNeil was pregnant when she moved into the upstairs apartment of a two-family home in March 2014 with her husband, James, and their three school-aged children. The rental was not a palace of a place, but it seemed clean, and the McNeils felt lucky to afford it on what she earned as a Walgreens customer service rep, and what he brought home driving for a limousine service.
Their son, James Jr., was born in July 2014, and as the months passed Christine became increasingly worried that he wasn’t doing what babies his age should do. First, he lost his appetite — he’d been eating two jars of baby food and an 8 oz bottle at each meal and then, as if overnight, he just stopped eating. His crawling was off too. “He did crawl, but it was weird, kind of lopsided,” Christine says. And as he neared a year, he wasn’t making any of the usual sounds that lead to talking.
“At every monthly check I’d say to the doctor, ‘Something’s wrong, this isn’t right,’” Christine says. “But I was told, ‘No, don’t worry, he’s perfect.’”
Then came his 1-year checkup on July 13, 2015, with the finger-prick test that is common but not universal at that age. Lead is measured in micrograms per deciliter of whole blood. Doctors agree that no number is safe, but a threshold for urgency has been established, and while for years the CDC has said that anything less than 10 is safe it lowered that four years ago to 5. There is no predictive chart that says a level of x leads to an outcome of y, nor is there any equation that determines whether long-term exposure at lower levels is any more or less damaging than shorter-term exposure at higher levels, but it is clear that the higher the number, the louder the alarm.
James Jr.’s number was 14.
That triggered a visit from the New Hampshire Department of Health, whose agents arrived with what’s called an XRF gun, a handheld device that can be aimed at anything — walls, bedding, toys, dishware, clothing — and immediately determines the presence of lead.
“The highest levels were in the room where the baby was sleeping.”– Christine McNeil
“The highest levels were in the room where the baby was sleeping,” Christine says. So now his crib is in what used to be the dining room.
In the seven months since he was diagnosed, the McNeils have done almost everything they can think of to reduce the levels of lead in their son’s blood. They give him vitamin C, which can bind with lead, and they give him copious fluids, in the hope of flushing the substance from his system. His numbers have dropped — to 9.6 last month and 8.7 this month, but are still above the current acceptable amount.
The things they have not done are move (they do not have the money it would require, Christine says) or bring in a lead abatement company (her landlord has applied for state funds to cover the cost of that work but the application has not been approved.) So instead, they continue to live in the home that poisoned their son, addressing the complications as they develop (he has made some progress on speech with the help of a Medicaid-funded therapist) and watching nervously for others. Most recently, they notice he has started biting his siblings or hitting himself when he becomes frustrated.
“Is this the beginning of something or just a normal stage for a toddler?” Christine asks. “From now on, I guess that’s the question.”
Diagnosed four years ago: Rylie Kung
Leslie Kung could not move out either.
She and her husband, Bradley, bought their 100-year-old house in Cedar Rapids, Iowa, in 2011, when their younger son, Rylie, was not quite a year old. They took out a mortgage for the $70,000 purchase price and one of the many papers they signed at closing was a disclaimer saying they were responsible for whatever lead hazards might exist in the home.
“You wouldn’t have looked at it and thought ‘lead house,’” Leslie says. “It was in move-in condition. It was not a house of horrors.”
A few months after they settled in, she began to notice changes in Rylie. “He had been a calm and snuggly little guy who gave hugs to everyone and smiled all the time,” Leslie says. “Sometime afterward he started having nightmares, he’d wake up screaming that a dog was going to bite him.” A finger-prick test at an appointment with a doctor in their new neighborhood soon found lead levels of 22.
As with the McNeils, these numbers brought visits from health department workers. Unlike the McNeils, they found the visits felt hostile, Leslie says. “They said they would come inspect us every three or four months, and we had to show that we’d made improvements to the home. Told us 'You need to put on a mask, put on some gloves, get the kids out of there, wet it down and scrape off the paint then vacuum it up,’” she says. “Telling a family with small children and a low income and no childcare to remediate on their own was ludicrous.”
But remediate they did, as best they could. Brad Kung is a carpenter and his father owns a small home-improvement company, so the couple did some of the work themselves and went $35,000 into debt to do the rest. First they took the attic down to bare studs and built a bedroom and bathroom with lead-free materials where the family of four slept and bathed. Once they had a new place to sleep work began on the downstairs, replacing windows and stripping paint, while trying to keep the children away from the dust. They could not afford anyplace else to live, and weren’t able to sell their house with its history of lead. They applied for state abatement funds numerous times, but were invariably rejected.
Rylie’s levels went down. The visits from the city slowed. The Kungs added a daughter, Kaeli, to the family, and when tested before her first birthday, her blood levels measured at 9. The visits from the city began again. Rylie developed behavioral problems like tantrums and impulse control at home and at school. He stopped making eye contact, and would often repeat the same phrase over and over. Not for nothing is lead poisoning often misdiagnosed as autism. Kaeli, meanwhile, has never had any symptoms at all.
“Telling a family with small children and a low income and no childcare to remediate on their own was ludicrous.” – Leslie Kung
The stress took a toll on Brad and Leslie and they separated in 2014. Without her husband’s income, she now qualifies for abatement funding. Both children are now below the safety threshold of 5, but Leslie well knows that this does not undo damage already done. “It’s not as if you have a cup filled with water and then you manage to pour a little out, and you pour a little out, and you pour a little out, and one day the cup is clean and dry and empty,” she says. “It’s like there’s a cup full of dye. Even if you pour it out the stain remains.”
So when she thinks of the future, it’s with awareness that she can’t yet gauge the depth of that stain. “I know the possibilities,” she says. “There might be social deviance and violence and arrest records. We haven’t gotten there yet. And I also have heard stories from people who’ve had a lead-poisoned kid in the '70s, the '80s, and this one is a doctor, a missionary, a Rhodes Scholar. So you never know.”
Diagnosed 10 years ago: Avi and AJ Rubin
In the summer of 2005, Tamara and Len Rubin decided to have the exterior of their Portland, Ore., house repainted. They were planning to refinance the $600,000 home, and thought the appraisal would be higher with a new coat of paint. So they hired a contractor whose $18,000 bid was by far the highest, but who justified his price with the fact that he was certified in lead-safe work practices.
The Portland house was the ninth one Tamara had owned. She bought, renovated and then sold properties, not professionally, but avocationally. This was the first time she had overseen a project with a young baby in the house, however — her third child, Avi, was 7 months old when the painting began — so she was willing to spend some extra money to keep him safe. “I knew there was lead paint,” she says. “I also knew there were ways to handle it.”
A lawsuit several years later would prove that the contractor was in fact not certified as he claimed and did not use safe practices. He removed the paint with an open-flame torch, sending fumes into the house, Tamara says. Both Avi and 3-year-old AJ became sick, suffering from vomiting and diarrhea that went on for months. “The doctor kept saying, ‘They don’t have a fever, just keep them hydrated,’” Tamara recalls. Finally she demanded a battery of tests. AJ’s blood levels were 4. Avi’s were 16.
“You have to move out of your house immediately,” she remembers being told. “Your baby has lead poisoning.”
Unlike the McNeils and the Kungs, the Rubins did have the money with which to evacuate. Taking only the clothes they were wearing, they first spent time in a hotel, then with her mother in California, then in a long-term rental made of brand-new construction materials. They spent $20,000 to replace the soil in the backyard, $2,500 on a cleaning company, thousands more to replace all the air vents, the roof shingles, the front porch. The total remediation bill came to $200,000. And even after the property passed several tests for lead, Tamara found she couldn’t stomach the thought of moving back in. So the house was sold at a loss.
“Though a whiz at math, the visual cognition part of Avi Rubin's brain seems to have been damaged, and the fifth-grader reads at a prekindergarten level. ”
The health problems that had begun in the first house followed to each new one, however. Both Avi and AJ had intestinal issues for a year. (Their older brother, Cole, was at sleepaway camp the summer the house was painted and “didn’t get poisoned," Tamara says. And her youngest, Charlie, was born in 2008, three years after.) AJ, now 13, has learning issues requiring some classroom accommodations, and suffers regularly from abdominal migraines, but since his brain was more developed when exposed to lead, his symptoms are relatively mild.
Avi, now 11, is far more affected. Though he has an IQ of 130, and is a whiz at math, his visual cognition seems to have been damaged, and the fifth grader is reading at a pre-kindergarten level. A violent toddler, he is slowly learning self-control, his mother says, but it took years to find a school with a special needs classroom that could teach him aurally rather than visually. Also, the school had to have been built after 1978 to ensure it did not have any lead paint.
The family is “pretty much broke,” Tamara says. Both she and her husband were employed as IT consultants when Avi was born, but left their jobs during the recession. Len now takes care of the boys full-time, which is the only way to get Avi the services he needs. Tamara runs a nonprofit, the Lead Safe America Foundation, and has produced a film, “MisLEAD,” about lead poisoning, but is seeking funding to have it completed and distributed.
This week she traveled to Flint, where she showed her rough cut of the film to an audience of several dozen, mostly local parents worried about their children, and she plans to return next week to speak to a town hall meeting of more than 1,000. The question she’s asked most often after these events: “What can we expect for our children’s lives?” she says.
Diagnosed 20 years ago: Sam and Bethany Hamilton
Samuel Hamilton was 2 years old in 1994 and his sister Bethany had just turned 1 when their family — parents Jamie and Paul, five children altogether, two dogs — rented half of a two-family home in St. Louis so Paul could be closer to his work as a financial analyst.
Soon after the move, the two youngest children went for their yearly check-ups, and when Jamie described their older urban home, the doctor decided to run a lead screen as a precaution.
Bethany’s level came back at 16. Sam’s was 36.
The health inspector arrived with his XRF gun and determined that a major flood in the city months before they moved in had caused water to seep into the plaster behind the brick façade of the house. The front wall of their apartment was crumbling from within, leaching lead dust into the air. They frantically put all their possessions in storage and moved in with Paul’s father, who didn’t have much room, but “there was no place else for us to go,” Jamie says.
A lawsuit followed, and the Hamiltons settled for $100,000, which was the limit of the landlord’s insurance, and was divided by the court between Bethany and Sam. It was clear from the start that Sam had been more severely affected, and over the years his days were filled with visits with every kind of therapist: fine motor, speech and language, anger management. Though the Hamiltons had homeschooled their other children, she realized she did not have the training needed to teach Sam, and they placed him in a private school where the students had such diagnoses as autism and Tourette syndrome. Sam was its first case of lead poisoning. Tuition was $13,000 a year.
When Sam was 12, Jamie had a conversation with his teachers that haunts her still. Sam’s future, they told her, would be difficult “because he looks so normal. His brain damage is invisible, his problems will surprise people, they will expect him to operate on a normal level, and when he doesn’t, that will cause problems.”
It has. Over the years, Jamie says, the friends he managed to make have drifted away, unable to relate to Sam, who had trouble reading facial expressions, understanding inferences and understanding jokes. With the onset of puberty, he became angrier and more difficult to control, often punching holes in his bedroom walls and throwing things out of windows during outbursts. When he was 16, he announced he no longer wanted to take his medication — Ritalin, Focalin, and other ADHD drugs — because, he said, “I just want to be normal, and normal people don’t take all these things.” When he was 18, he did stop the medication, and three months later attempted suicide, swallowing a bottle of caffeine pills, then begging his parents to take him to the hospital because “I don’t want to die.”
“When I got older, I came to terms with the fact that I am different and I need help. This is what life is like for me.”– Samuel Hamilton
He refused to apply for Social Security benefits now that he was an adult — “I’m not doing that, I want to have a job like everyone else” — and found work as a YMCA lifeguard through a family friend. But when he overheard someone speaking in a derogatory way about Bethany, who is now a college student, he punched him, and was dismissed. He got another job, organizing carts at a grocery store, but he became angry when told he was taking too many breaks, and he lost that position too. He was increasingly belligerent and slothful at home, and finally his parents “made the hardest decision two people could make in their entire life,” Jamie says, and gave him an ultimatum.
“If you are not willing to get yourself together and you continue to threaten your mom and I, we are going to have to ask you to move out,” Paul told him.
“Fine,” he answered. “I don’t need you anymore.” He crammed some clothes in a backpack and stormed out.
For months, they heard from him sporadically. He had found a job folding clothes at JCPenney. He had found an apartment with some others who worked there. Then one morning, Jamie found him sleeping in the hammock behind the family house, covered with bugbites, looking as though he’d been living on the streets — which he had.
When they finally deciphered his story, the Hamiltons realized one of Sam’s apartment mates had decided to break into the JCPenney and Sam had helped by supplying the black face paint the young man had used as a disguise. The others told him “if I didn’t do it I would be kicked out,” he told his parents, “and where would I go? So I helped them.”
He was charged as an accessory and given two years' probation. The arrest led to an epiphany. “When I was younger, I just wanted to forget I had been lead poisoned and just live a normal life, I didn’t want to be different than anybody else,” he said in a phone interview. “But when I got older, I came to terms with the fact that I am different and I need help. This is what life is like for me.”
He applied for Social Security benefits, entered a vocational training program and hopes eventually to “work with people with developmental disabilities, autism, things like that, because I can relate to them.” But he has no hope of getting such a job, he knows, until his probation is no longer on his record, which won’t happen until September, assuming he doesn’t get into any more trouble.
For now, he does his chores around the house, attends therapy and vocational classes, applies for jobs he assumes he will not get and waits. His parents wait too.
“Can he ever move out and live on his own? It would have to be someplace where he had assistance to make sure he’s taking his medication, sleeping at night, doing his dishes, doing his laundry,” Jamie says, her latest version of the question she’s been asking since he was diagnosed: “What comes next?”
Says Sam: “I have heard about what happened in Flint, Michigan, and it makes me feel really bad for the kids and everyone over there and stuff. They are going to have to grow up and they are going to have problems, maybe worse problems than I have.
“It's not easy having lead poisoning and growing up with it,” he says. “All the people in Flint, my heart goes out to them.”