As they started their family, Mooresville residents Theresa and Lucas Black dutifully got their children immunized, never doubting their doctor’s word that vaccines are safe and necessary.
But their faith in those promises was shaken in 2001, when their 3-month-old daughter, Angelica, developed life-threatening seizures and brain damage just three days after getting several vaccinations.
The child’s Charlotte neurologist diagnosed her with vaccine-related encephalopathy, or brain injury. And in 2006, the little-known federal “vaccine court” agreed, awarding Angelica nearly $2 million plus about $250,000 a year for medical expenses for the rest of her life.
Despite the ruling that vaccines caused her daughter’s brain damage, Theresa Black said she has felt bullied in recent weeks by reaction to the California measles outbreak that has spread to 16 other states.
Health officials have stressed repeatedly that vaccines are safe, and some people have suggested that parents who choose not to get their children vaccinated are selfish and willfully endangering the lives of others.
“There’s people out there calling for us to get jailed,” Black said. “I am not a freak. I am not trying to endanger anyone’s child. … I actually think vaccinating is a good thing. My problem is I don’t think they are as safe as they could be. … There are bad things that happen.”
Today, Angelica is 14 and profoundly disabled. She has cerebral palsy and a seizure disorder. She is unable to speak. She uses a feeding tube and a wheelchair. Because she requires around-the-clock attention, her parents quit their jobs to care for her. The family moved to Florida in 2009.
Renee Gentry, the Virginia lawyer who represented the Blacks before the vaccine court, said she too has been bothered by some reaction to the measles outbreak. “People are saying there’s absolutely no evidence that vaccines cause brain injury, and we’re sitting here with all these cases. It’s rare … but they clearly have happened.”
What is vaccine court?
Since 1988, when the vaccine court was established by Congress, about 4,000 victims have received more than $2.8 billion in compensation for vaccine injuries, according to federal records. In fiscal year 2014 alone, the court granted $202 million to 365 vaccine-injury victims.
Most people have never heard of the vaccine court or the compensation program.
It came about in the 1980s because pharmaceutical companies were facing an increase in lawsuits claiming adverse reactions, mainly from the diphtheria-tetanus-pertussis (DPT) vaccine. Sympathetic juries awarded millions of dollars in some cases. Some manufacturers left the market and shortages loomed.
Congress decided that, instead of suing vaccine makers, people would first have to seek compensation from the court, funded by a surcharge on vaccines. The fund balance now is $3.5 billion. Awards are decided by special masters in the U.S. Court of Federal Claims.
Under the law, plaintiffs cannot seek punitive damages or losses to family members as they can in civil court. But the process was intended to be speedier, with a lower burden of proof.
The federal law created a table of injuries listing certain symptoms that could be blamed on the vaccine if they occurred within a specified time after the vaccination. For example, in Angelica’s case, the window for developing seizures after a pertussis vaccination was 72 hours. Her seizures started within 70 hours.
Initially most cases involved “table injuries” that were conceded by the government, said Gentry, president of the Vaccine Injured Petitioners Bar Association, a group of lawyers who specialize in these cases. But in recent years, Gentry said cases have become more adversarial; plaintiffs “have to prove actual causation,” and lawyers for both the plaintiffs and the federal government call expert witnesses.
Awards have ranged from $1,100 to more than $30 million, said David Bowman, spokesman for the Health Resources and Services Administration. In 26 years, 15,747 petitions have been filed with the vaccine compensation program, and 3,941 received awards – about one in four.
Peter Sarda, a Raleigh lawyer, has won 17 vaccine court cases since 1990, including the case of a Stanly County 2-year-old who suffered brain damage after getting a chicken pox vaccination in 2008. In December, the court awarded the child lump sums totaling $1.9 million, plus annual medical expenses for the rest of his life. If he lives to 72, the award could total $14 million, Sarda said.
The boy’s mother took her older daughter to the county health department in October 2008 to get a chicken pox vaccination, Sarda said. While there, a health care provider offered to vaccinate her son as well. Although the mother thought her 2-year-old had been vaccinated against chicken pox, she didn’t have his records and wasn’t sure. He got the vaccine, and two weeks later he developed seizures and was subsequently diagnosed with encephalitis, or permanent brain damage.
Now 8, the boy is “totally impaired,” Sarda said. “He cannot even sit up. …The mother still blames herself for not grabbing the kids and leaving.” Medical records show the boy had received a chicken pox vaccination a year earlier.
Despite the vaccine-injury cases he’s won, Sarda said he’s a “firm believer in vaccines” and that vaccine injuries are “very rare.”
What happened to Angelica?
Born on Nov. 12, 2000, Angelica Black is the seventh of Theresa and Lucas Black’s 11 children.
She was developing normally until she got four vaccines when she was almost 3 months old. Three days later, Angelica was “sighing and cooing and playing” when Theresa Black left for her job as a restaurant manager. Later, when Lucas Black checked on her, the baby wasn’t breathing.
Angelica was transported by ambulance to Lake Norman Regional Medical Center in Mooresville, and Theresa Black, who rode along, said the baby barely had a pulse. She started having seizures in the emergency room.
Doctors transferred Angelica to Charlotte’s Novant Health Presbyterian Medical Center, where she stayed in the pediatric intensive care unit for two weeks. Dr. Robert Nahouraii, a pediatric neurologist with Mecklenburg Neurological Associates, eventually concluded she had a reaction to the pertussis (whooping cough) vaccine.
While dealing with Angelica’s health problems, Theresa Black continued to get her children vaccinated. Over the next three years, four of the other children were diagnosed with medical and developmental conditions, including two with disorders on the autism spectrum. By that time, Theresa Black said her “very pro-vaccination doctors” agreed with her decision to stop having her children vaccinated.
Angelica was 5 when she last got a vaccine. “We kept vaccinating for a long time, longer than a lot of people would have,” Theresa Black said. “I still agree that most people should do it. But I couldn’t continue on.”
The vaccine injury award
In 2003, the Blacks filed their claim with the vaccine court, and both Nahouraii and Dr. Amy Ferguson, of Lake Norman Pediatrics, wrote letters in support.
Angelica had been a “normal, healthy baby” before that day in the ER, Ferguson said in an interview. “This is truly one of those rare (vaccine) reactions that was just devastating. … She was as sick as you can get and not die.”
Ferguson continues to recommend vaccines for most children because they protect against “terrible illnesses that we used to see.”
Unlike some pediatricians, Ferguson said she and her partners will continue to work with parents who question the safety of vaccines. “I still think they have a right to choose what they want for their child.”
It took three years for the Blacks to get a vaccine court ruling, in 2006, and another two years to be compensated.
Angelica received two lump sums totaling more than $1.2 million. They included $555,000 for lost future earnings, $216,000 for “pain and suffering,” $437,000 for medical expenses in the first year after the award, and $7,000 for past unreimbursed medical expenses. A separate payment of about $205,000 went to North Carolina’s Medicaid program to reimburse for past care.
Another amount was set aside to buy annuities to pay lifetime expenses for Angelica’s medical care. Records show she has received more than $250,000 per year since 2009 and similar amounts are designated for future years. The money is kept in a trust and administered by a court-appointed guardian.
The trust pays for insurance premiums and out-of-pocket expenses, such as wheelchairs and suction machines. It also paid for a special van and construction to make their house accessible. The Blacks receive salaries for being their daughter’s caregivers.
Angelica’s parents gave up their jobs to care for her instead of paying $80 an hour for multiple nurses each day. When they tried that, some nurses canceled at the last minute or admitted they felt uncomfortable taking care of Angelica because of her many physical needs, Theresa Black said.
The court award covers Angelica’s care, but Theresa Black said the rest of the family is living at “pretty much poverty level. There have been times when I could barely afford shoes for the other kids.
“Everyone in this house has been affected,” she said. “Nothing will ever be the same.”
Theresa Black said she has felt attacked by parents who have told her “they would rather take the risk of (getting vaccinated) and having their child get brain damaged than have their child get measles.” Others have said she shouldn’t complain because of the vaccine court compensation.
“We were not compensated for the loss of income for all the hospital stays and doctor visits,” Theresa Black said. “And there has been no counseling for the trauma we suffered. … I did, and still do, feel like a failure as a parent.”
Over the years, Theresa Black said she’s met doctors who “didn’t know there was a vaccine compensation program” and are not trained to recognize symptoms of vaccine injury. “If they really knew how to truly monitor the side effects, they might see that they’re not quite as safe as they’re saying. Maybe a subset of people shouldn’t have them?”
After Angelica’s experience, the Blacks decided not to vaccinate their two youngest daughters. “I think it’s a good thing that I stopped putting chemicals in them,” Theresa Black said. “Something in those (vaccines) didn’t work with our blood.”
The youngest child, Sabrina, was born in 2007, and Theresa Black said nurses at Novant Health Huntersville Medical Center offered to give the newborn a standard hepatitis B shot. “I said, ‘No. Absolutely not.’ I told them, ‘I’ll wait.’”
After 11 years in Mooresville, the Blacks moved to Florida in 2009 to get away from bad memories. “I couldn’t go down to Charlotte without thinking” of Angelica’s hospital stay, Theresa Black said.
Today, two of the Blacks’ oldest children have children of their own, and they’re struggling with vaccine decisions.
Stephen, now 22, has a daughter who’s had some vaccinations, but when she was 12 months old, after getting the MMR for measles, mumps and rubella, she “lost all the verbal skills she had attained,” Theresa Black said. The child is now getting fewer vaccines at a time. At 20 months, she’s seeing a speech therapist to help regain what she lost.
This second-generation experience affected the Blacks’ 20-year-old daughter, Catherine. In 2013, she gave birth to her first child, a daughter, who is not getting vaccinated.