When Susan Lawson of Colorado hears parents declaring, unequivocally, that everyone should vaccinate their children because its perfectly safe, she says it feels li...
Susan Lawson and her daughter Julia. Photo courtesy of Susan Lawson.
When
Susan Lawson of Colorado hears parents declaring, unequivocally, that
everyone should vaccinate their children because it’s perfectly safe,
she says it feels “like a punch in the gut.” That’s because she’s seen
another side of the story: Her daughter Julia, now 9, was left with
permanent brain damage — an injury acknowledged by a federal court
payout — after receiving her MMRV (measles-mumps-rubella-varicella) shot
when she was a year old.
Lawson
tells Yahoo Parenting that one morning, about a week after Julia
received the shot, her now-ex-husband found their daughter in a
terrifying state. “She was blue and cold and her body was arched, her
eyes were looking in opposite directions, and she was covered in feces
and vomit,” she recalls. “We thought she was dead.” She was rushed to
the hospital, where doctors said she was having seizures, and she was
put into a medically induced coma. Julia spent many days in intensive
care and the neurology ward before being sent home with the diagnosis of
encephalitis, or swelling of the brain.
Lawson,
a veterinarian who had the utmost faith in medicine, had never before
questioned vaccinations, and had always inoculated Julia right on
schedule. But now she began to wonder. Hospital doctors dismissed any
thought of a connection. But when Lawson asked a pediatrician about it,
she was told it could be a possibility. Every family featured in this
story received a payment by the United States Court of Federal Claims,
which concluded that their rare injuries were caused by the vaccines.
“I
felt shocked, bewildered, and guilty,” Lawson recalls. “We were trying
to protect her, and instead I destroyed her. The guilt is huge.”
The pediatrician helped Lawson file a notice through the Vaccine Adverse Event Reporting System (VAERS),
a national vaccine safety surveillance program cosponsored by the
Centers for Disease Control and Prevention (CDC) and the Food and Drug
Administration (FDA). Lawson then hired a vaccine-injury attorney and
began what became a trying, four-year journey through the country’s National Vaccine Injury Compensation Program of the US Court of Federal Claims — a specific, no-fault forum for vaccine injuries or deaths, set up by Congress in 1986 to ensure justice for children (and, as clarified by the Supreme Court recently,
to protect vaccine manufacturers from being sued). At the end of it, in
2011, Lawson was awarded nearly $1.5 million for lost future wages,
future life care, and pain and suffering on behalf of her daughter, whom
she describes as “an eternal toddler,” with little language skills,
constant medications, and daily seizures.
“Was it justice? I mean, they could have done nothing,” Lawson says. “But I just want my kid back.”
THE RISKS
Serious
vaccine injuries and deaths are few and far between, according to the
CDC. “Like any medication, vaccines can cause side effects,” a
spokesperson tells Yahoo Parenting through an email. “The side effects
associated with getting vaccines are almost always mild (such as redness
and swelling where the shot was given) and go away within a few days.
Severe reactions, such as a severe allergic reaction, are rare.”
How rare? A CDC list of possible vaccine side effects
notes that, for MMRV, the risk of a severe allergic reaction is “fewer
than 4 per million,” while the risk of serious incidents including brain
damage, it says, “occur so rarely, we can’t be sure whether they are
caused by the vaccine or not.” Other possible risks range from febrile
seizures (about one child in 1,250 for MMRV) to a fever of 105 or higher
(about one child per 16,000 for DTaP). Notes the CDC spokesperson,
“Years of testing are required by law before a vaccine is licensed and
distributed. Once in use, vaccines are continually monitored for safety
and efficacy. As a result, the United States currently has the safest,
most effective vaccine supply in history.”
Julia and her brother during a period of hospitalization in 2008. Photo courtesy of Susan Lawson.
An overwhelming majority of Americans agree: A just released Pew Research Survey found
that 83 percent of the public says vaccines for diseases such as
measles, mumps, and rubella (MMR) are safe for healthy children, while
about nine percent think such vaccines are not safe; an additional seven
percent say that they don’t know.
A 2012 study
out of Boston Medical Center, meanwhile, found that, in a random
sampling of 100 VAERS reports, only 3 percent of side effects (mostly
allergic reactions) were classified as definitely caused by the vaccine;
20 percent were determined as “probably” related, another 20 percent as
“possibly” related and a majority were classified as “unlikely” or
“unrelated.”
But,
says the CDC representative, “Individuals react differently to
vaccines, and there is no way to absolutely predict the reaction of a
specific individual to a particular vaccine. Anyone who takes a vaccine
should be fully informed about both the benefits and the risks of
vaccination.” Dr. Mobeen Rathore, a Florida pediatrician and member of
the American Academy of Pediatrics’ Committee on Infectious Diseases,
agrees, stressing to Yahoo Parenting that, “while most people wouldn’t
say there’s absolutely no risk of complications from vaccines, the
benefits outweigh the risks of any complication, which are rare.” In the
cases where they do unfortunately occur, he says, “It’s appropriate
that the families are compensated.”
Renee Gentry, a Washington D.C.–based vaccine-injury attorney and president of the Vaccine Injury Petitioners Bar Association,
believes that injuries, however rare, should be a part of the public
conversation. “Vaccines are incredibly important, but we should treat
them as they are — man-made pharmaceuticals that carry risk. The fear is
that if you talk about that at all, people won’t vaccinate.” But not
discussing it, she says, is to deny reality. “To say there is nothing
unsafe about vaccines — when you can have a reaction to an aspirin —
makes no sense.” She adds, “Informed consent is the underlying basis of
medical care, and parents shouldn’t have to be afraid to raise questions
with their doctors. Because yes, vaccine injuries are rare, but they do
exist.”
RECENT INJURY CASES
Alisa
Pittaluga, a pediatric occupational therapist and mother of three in
upstate New York, had always felt a bit cautious when it came to
vaccinations. “I’ve questioned it because of my profession,” she
explains, noting that many parents over the years have expressed beliefs
that their child’s medical conditions were somehow related to vaccines.
Pittaluga believed in vaccinating, though, and compromised by delaying
and spacing out the shots for her youngest child, Daniel, now 7. He had
his first MMR shot right before he turned 4 (rather than at the
CDC-recommended age of 12 to 15 months).
“He
was a totally healthy 3-year-old,” she says. But within two weeks of
Daniel’s shot, his mom began to notice he had bruises in strange places —
on his chin, along his spine. One night, while bathing him, she saw
that his whole upper body appeared to be bruised. “He looked like he’d
been in a car accident — his arms and back were purple with bruises,”
she recalls, adding that she became an instant “wreck,” as she’d worked
with kids who had leukemia, and knew that excessive bruising was an
early symptom. During a doctor’s exam to rule out the cancer, she
recalls, “I was shaking from head to toe for an hour.”
Daniel Pittaluga several years ago, before receiving his shot. Photo courtesy of Alisa Pittaluga.
Leukemia
was ruled out; instead, he was diagnosed with the disorder idiopathic
thrombocytopenic purpura (ITP), which leads to excessive bleeding or
bruising because of low blood platelets that help to clot the blood. His
pediatrician mentioned that it could have been associated with his MMR
vaccination — as it has been found to be, according to the CDC’s list of
MMR side effects, for about 1 in 30,000 doses.
“I was devastated,” Pittaluga recalls. “I cried. I felt so guilty that I took this kid in and made him get his shot.”
Luckily,
Daniel’s condition resolved itself in a year (as do the majority of
MMR-related cases). But during that time, he had to be monitored with
weekly blood tests, hooked up to a IV blood bag for dangerously low
platelet levels, and supervised constantly to make sure he never fell
down and hit his head, which could have been deadly. “The hardest part
was having a 3-year-old boy who was not allowed to run or jump,”
Pittaluga says. She filed a claim with the vaccine-injury court and, at
the end of 2014, was awarded compensation (a sum she requested be kept
private), to be put into a trust for Daniel.
Pittaluga,
now pregnant with her fourth child, says she feels validated by the
ruling, but forever changed. “I understand that with measles, people can
have complications,” she says. “But watching your 3-year-old not being
able to clot his blood for a year is much more terrifying to me.” She’s
uncertain, for now, how she’ll proceed with vaccinations for her
newborn, and admits to feeling “furious” regarding the anti-anti-vaxxer
sentiments that dominate the media.
Harry
Tembenis of Massachusetts has similar reactions to the discourse. His
only child, a son named Elias, developed a seizure disorder as the
result of a routine DTaP shot at four months old; he eventually died, at
the age of 7, during a major seizure, while his case with the Vaccine
Injury Compensation Program court was still pending. The court, after
seven years, eventually determined that the vaccine caused his disorder,
agreeing to pay out more than $1 million in 2013. “We got justice, we
got closure,” Tembenis tells Yahoo Parenting. But he takes umbrage when
he hears medical experts saying that vaccines are completely safe,
noting that when they took Elias in for his shots, on schedule, they
knew nothing about any possible risks. “We took the pediatrician’s word
as gospel,” he says. “Unfortunately, my wife and I learned the hard
way.”
Since the first Vaccine Injury Compensation Program (VICP) claims
were filed in 1989, nearly 4,000 compensation awards have been made,
totaling nearly $3 billion; nearly 10,000 claims, meanwhile, have been
dismissed. In 2014, the court made 365 awards totaling more than $223
million (counting both petitioner payouts and attorney fees); the totals
represent payouts both in which the court concedes a vaccine connection
and those that were simply settlements. In cases where petitioners win
concession, payout amounts vary wildly due to severity of injury and
whether a child dies or not. Deaths, Gentry explains, usually receive
less, because when a child survives but sustains serious injury (as in
Julia’s situation), the court makes payouts for future life care and
future lost wages, as well as for pain and suffering. (Although the
$250,000 caps for both death and pain-and-suffering payouts have not
changed since 1986, Gentry notes). To date, the majority of compensated
claims stem from reactions to DTP (1,270 injuries), influenza (985), and
MMR (367) vaccines.
Some injuries fall within what’s called the Vaccine Injury Table
— a collection of conditions that, if they occur within a specified
amount of time, “it is presumed that the vaccine was the cause of the
injury or condition unless another cause is found.” Injuries that fall
within the Table — including anaphylactic shock, encephalitis, chronic
arthritis, and ITP (what Daniel had) — are meant to go through the court
system more quickly (although it doesn’t always happen that way, as
with Julia’s four-year case). Other cases become more drawn-out and
complex, with many feeling “adversarial,” Gentry notes.
“There
are few Table injuries, so you almost always need to get an expert,”
she says, noting that there have been no Table updates since the late
’90s — although additions are currently being considered, according to a
spokesperson for the U.S. Department of Health Resources and Services
Administration (which oversees the VICP), including the immune disorder
Guillain-Barré Syndrome in relation to the influenza shot. “And,” Gentry
says, “it’s incredibly difficult to get experts, as their reputations
wind up getting viciously attacked.” Attorneys often pay for experts and
medical records up front and get reimbursed at the end of a case. Many
petitioners wind up taking settlements, Gentry notes, rather than risk
getting into what can often turn into a three-year court dispute.
“Basically, you can move cases through very quickly if you want to lose,” Gentry notes. “It’s not a workable model.”
The Pittaluga family, with Daniel at left. Photo courtesy of Alisa Pittaluga.
According
to Lisa Reyes, chief deputy clerk at the US Court of Federal Claims,
the Vaccine Program was created with the expectation that most cases
would involve Table injuries. “About 90 percent of the petitions filed
in the early days of the Program presented Table injuries, and with a
few exceptions, the question of entitlement to compensation in these
cases was easily resolved,” she explains to Yahoo Parenting in an email.
But today, she continues, “About 98 percent of cases filed represent
these off-Table claims. The effect of these changes is that more cases
require evidentiary hearings, giving the perception the process is more
‘adversarial.’” As for reports about lagging cases, Reyes points to a 2014 analysis
of the Vaccine Program by the US Government Accountability Office,
which found that “In all but 1 year since fiscal year 2009, the program
has met the target for the average time to adjudicate claims (about 3.5
years).”
The
case over Daniel’s ITP was one of 357 awards granted in fiscal year
2014. Others include one that garnered more than $2.3 million in
compensation to a young North Carolina boy with encephalitis and
permanent brain damage following a chicken pox vaccine (one of 127
awards so far in 2015); an Arkansas girl who was awarded $1.3 million
for neurological damage sustained following MMR, hepatitis-A, and
chicken pox vaccines; and an 8-year-old Kansas boy who, the court
conceded, had a seizure disorder triggered by an underlying immune
deficiency following a round of 12-month shots that included DTaP, HiB,
MMR, Varicella (chicken pox), and Prevnar (pneumonia). The complicated
court case took six years to reach a decision from the time it was filed
in 2008.
“The
doctors couldn’t stop his seizures,” says his mother Ann, a
stay-at-home mom to four children (who did not want her surname printed
because of family privacy concerns). “But I didn’t attribute it to the
shots. My mind didn’t go there.” At some point during her rounds of
visits with baffled doctors, endless tests, her son losing his ability
to speak and walk, large doses of steroids, and various diagnoses
ranging from epilepsy to mitochondrial encephalomyopathy (a complex
genetic disorder), a neurologist posited the vaccine-link theory. That
led her to hire a vaccine-injury attorney and go through the court
system; she’s still awaiting a decision on the amount of damages her son
— who remains on anti-seizure medication — will be awarded. But, Ann
says, she’s not anti-vaccine, and has since partially vaccinated her
youngest children on a delayed schedule.
“I
was scared to death to do it, but I still think they’re important,” she
tells Yahoo Parenting. “I do think people should be educated, and that
no one should go into vaccines blindly.”
Lawson,
meanwhile, has been forever changed by the reality of becoming one of
the rare statistics. “I feel betrayed by the trust I had put in my
pediatrician, the medical establishment, and my education,” she says.
Since her daughter’s injury, she’s not allowed her son, 12, to have any
of his remaining shots. “Julia qualifies for a medical exemption. My
son, however, does not. I exercise my personal belief exemption for him,
for obvious reasons,” she says. “If vaccines become mandated, am I
really expected to risk this happening to him? I won’t. They can fine
me, jail me, whatever they want. I’m not vaccinating him. We will move
out of the country if necessary. That’s how seriously I take this. It
has to be a choice.”