There is a hospital consistently ranked among the top in the United States in various pediatric fields. It has been hailed as having the best physicians and is the teaching hospital for the No. 1 medical school in the country.
But this hospital — Boston Children’s Hospital — is now the target of national debate regarding practices that have resulted in children being taken away from parents. It’s being called the “dark side to Children’s.”
Not only is there the case of a Connecticut teen (Justina Pelletier) who has been held at Boston Children’s Hospital for 10 months after her parents lost custody of her over accusations of medical child abuse – something they vehemently oppose — but there are now a handful of other similar stories coming to light where parents were stripped of their ability to oversee their child’s care at Children’s.
Jessica Hilliard is one of them.
Hilliard’s relationship with Boston Children’s Hospital dates back to 2006. Her daughter, Eithene, was born with multiple birth defects, so Jessica and her husband would live at the hospital for hundreds of days a year over the next five years.
When she was 2 1/2 years old, the Eithene’s condition began to worsen. Combining knowledge from her own scientific degrees – Hilliard currently studying for a Masters in bioethics – and doing her own research, as many parents with access to the Internet these days would also do, Hilliard suggested to hospital physicians that her daughter be tested for mitochondrial disease.
This is the same complex disease that 14-year-old Justina Pelletier was diagnosed with, something her parents had been treating her for and something Boston Children’s disagreed with when the Pelletiers brought her into the hospital for the flu. This heated disagreement led to state involvement and, 10 months later, Justina is still at the hospital, seeing her parents only once a week as they continue to battle for custody of her.
“When we approached Children’s with the possibility it was [mitochondrial disease], we were immediately met with resistance,” specifically from the hospital’s genetics and metabolism departments, Jessica Hilliard said.
But they kept pressing and eventually had a sample of muscle tissue taken from their daughter’s thigh. The mitochondria in the cells of this tissue and other genetic aspects would be analyzed. This test, Hilliard said, was the “gold standard” for a mitochondrial diagnosis at the time it was conducted on her daughter. The disease, which is the result of a cell’s mitochondria (the energy producing organelle) not functioning properly, can manifest itself is a variety of ways and is therefore difficult to diagnose and has been confused with other disorders.
“I was a mother desperately trying to diagnose my baby. I was running over everybody in my way.”
Cases of misdiagnosis have included somatoform disorder, which is what the hospital says Justina Pelletier really has — a psychiatric disorder that puts the symptoms she’s experiencing all in her head. In the last couple of decades up to just a couple of years ago, there have been reports from the National Institutes of Health describing cases of mitochondrial disease being initially misdiagnosed as somatoform disorder.
But the Hilliards are not the only ones who thought something was physically wrong (likely mitochondrial disease) with their daughter. Some specialists at Boston Children’s Hospital agreed, too.
Hilliard said the genetics department that had analyzed her daughter’s muscle sample “didn’t believe the results,” which favored a diagnosis of mitochondrial disease. Instead of telling the Hilliards of this initial finding, the mother said doctors withheld the information for three months while they got another specialist elsewhere to test the sample as well. That specialist eventually agreed with the mito diagnosis.
“In mito medical community, there is a huge divide among specialists about how to diagnose, who to diagnose and how to treat when you diagnose,” Hilliard said. “This second round of testing showed my daughter had a problem with her mitochondria and it was finally revealed to my family and, very reluctantly, [the metabolism department] gave her a mitochondrial diagnosis.”
This initial reluctance, Hilliard said, was her “first red flag.”
In March 2011, the Hilliards’ daughter took a turn for the worst. It was recommend by some at the hospital that they prepare for end-of-life care. At this point, the team that diagnosed the girl with mitochondrial disease revoked this diagnosis, something her everyday care specialists disagreed with, according to Hilliard.
“There was a very, very large internal conflict between the metabolism department and the doctors who had been caring for our child in her last dying months,” Hilliard said.
When the metabolism team learned the Hilliards would be preparing for hospice care, they accused the parents of not taking steps to help her daughter when these doctors believed she could actually be treated and live.
“This was a very, very traumatic experience for us. Our child was entering the stage of actively dying. There was nothing we haven’t tried that was going to save this child. We were traumatized trying to make hardest decision of our life and being accused that we were making wrong decision, letting her die,” Hilliard said.
The hospital’s ethics committee conducted a review of the girl’s medical history and determined that “medical science had been exhausted for this child,” Hilliard said. Regardless of the diagnosis, she was going to die.
At the same time, the hospital’s child protection team was alerted to the Hilliard’s situation. Their younger son had been admitted to the hospital with a long fever and an antibiotic-resistant ear infection. At some point during his care, he too took at developmental turn for the worse, starting to exhibit symptoms that would be indicative of mitochondria malfunction.
To the hospital’s child protection team, the parents might have been suffering from a syndrome themselves — Munchausen by proxy, a syndrome where the parents either believe their child has an illness and are treating them for it or are physically inducing the illness themselves. The NIH states that symptoms indicative of this syndrome on the parent’s end include being “overattentive or ‘too helpful’” and being “involved in a health care field, such as nursing.”
Hilliard’s background in science and medicine and attitude regarding her child’s care apparently fit the bill for this syndrome in the eyes of Boston Children’s Hospital. The stereotypes associated with this syndrome stunned Hilliard.
“You would think the educational achievements my family has … are the things you would want for your family,” she said, not something that would be used against them.
The hospital’s child protection team got the state’s Department of Children and Families involved. The state child protection agency conducted an investigation into the Hilliards’ case and found nothing out of place. The children remained in their parents’ custody.
Although the Hilliards found this whole situation “shocking,” the mother said she still believes her daughter had high-quality care at Boston Children’s Hospital.
“The cases going on at Children’s are the result of a few radicalized individuals and do not represent the work of the hospital as a whole,” she said.
‘I could have come in here and taken your son right away from you’
But Hilliard’s situation was not closed completely.
Their daughter died in July 2011, just shy of her fifth birthday. But during her dying weeks, the Hilliards were going through the process of requesting their son be tested for the same genetic disease some physicians believed his sister had.
Fast-forward to November 2011. The Hilliards brought their son to the hospital. Once there, the child protection team took over his care immediately, Hilliard said.
She said they were accused of making up all their son’s issues. Issues like autism, which was confirmed by another physician in the months prior.
“They called [the Department of Children and Families (DCF)] on our family … they told DCF they had spoken with all my son’s specialists and they all agreed with the child protection team. They said if we would take him off all these treatments it would prove he was a normal healthy child,” Hilliard said.
What’s more, Hilliard said, the hospital’s child protection team recommended custody of her son be immediately taken by DCF.
But “God was protecting us,” Hilliard said. “The DCF case screener, they said, ‘are the parents willing to cooperate with you? If so, we’re not going to take custody of them.’ My husband and I immediately agreed to do whatever Children’s wanted.”
As it turned out, their son’s immediate care physicians didn’t agree with removing him from all treatments and only removed one. The case was closed a month later.
The family left Boston Children’s Hospital immediately and never returned.
They transferred their son’s treatment to Tufts Medical Center where Dr. Mark Korson is an expert in mitochondrial disease. He’s the same doctor who diagnosed Justina Pelletier.
But the Hilliards’ experience at Boston Children’s still haunted them. The child protection team at Boston Children’s contacted the equivalent team at Tufts, alerting them to the issues they said they had with the Hilliards. Again, the Hilliards were the subject to a case with the state’s child protection agency.
At this point, it was agreed that they would systematically take their son off of all treatments. Within a month of doing so, he was dropping weight and his condition was not improving.
“My son is currently back on all medical interventions he was on before, plus a few,” Hilliard said. “This proved he has multiple medical issues and the medical interventions are needed.”
“Since then my family has had fabulous care at Tufts. My main concern is the child protection team at Boston Children’s Hospital, they don’t see any boundaries. They don’t see anything wrong with going after families that aren’t at the hospital anymore,” Hilliard said.
The Hilliards and Pelletiers are not the only families to encounter disagreements with the hospital’s child protection team, leading to state investigations. The Boston Globe in its recent story about the Pelletiers’ case reported at least five cases, Hilliard’s being one of them.
‘This has been a pattern for 20 years’
Patty Mele’s encounter with Children’s goes back two decades. Her now 20-year-old son has mitochondrial disease.
“I was a mother desperately trying to diagnose my baby. I was running over everybody in my way,” Mele told TheBlaze. “I did everything I possibly could.”
At this time, mitochondrial diagnoses were even more rare than they are today. Mele said she was “fighting every doctor at Children’s.”
Later, she said she got a knock at her door.
Mele had previously done case reviews for the social services department. The man at her door was a case worker, a man she knew from her prior work.
“He said, ‘Patty, we have a complaint or concern filed against you,’” Mele recalled, saying he had come with a complaint made from the hospital questioning medical abuse. “He said, ‘There are several ways I could handle this. I could have come in here and taken your son right away from you.’”
But thanks to Mele’s connection with the department, she said he investigated her case and the claims thoroughly, and “it was all dropped.”
“This has been a pattern for 20 years. It’s inexcusable that this is still going on two decades later and escalated to this level,” Mele said. “Now we’ve graduated to accusing mothers of Munchausen by proxy and are taking children away and putting them in DCF custody. Not only taking them away but stripping them of a diagnosis of mitochondrial disease, saying [parents] can’t see other medical experts, admitting them to Children’s who will hold them hostage and treat for something else.”
‘You’d think you’re living in the Soviet Union’
From a legal perspective, Jim Ianiri, an attorney in the Boston area who at one point advised the Hilliards and was more recently consulted by the Pelletiers, told TheBlaze he’s been involved in custody battles over medical issues since the 1990s. The issue over time has become stickier as more complex, hard-to-diagnose conditions like mitochondrial disease came into the picture.
“It’s trickier because you’re dealing with new disorders that have not necessarily been accepted everywhere,” he said.
But what happens in cases where physicians or physicians and parents disagree with another doctor’s diagnosis, which happened in the Pelletiers’ case?
To Ianiri, the issue all goes back to the formation of a child protection team at the hospital in the 1970s. This team at the Boston Children’s Hospital includes a multi-disciplinary group who focuses on “issues of family violence, child maltreatment and neglect,” according to the hospital’s website.
Ianiri said he believes there are outliers at Boston Children’s and other area hospitals that don’t acknowledge mitochondrial disease is a legitimate diagnosis or condition.
“They think it’s entirely psychological in nature. They use the child protection team as coverage and leverage,” he said.
Then when the Department of Children and Families gets involved, Ianiri said they often side with the hospital’s conclusions. The Hilliards case, which involved a caseworker who did a thorough investigation into the situation, was not necessarily the norm, according to Iarini.
“DCF and the court just for the most part look at the child protection team as child abuse exerts,” Ianiri said. “If they conclude that a child is abused or being neglected, they’re not going to second guess them.”
Ianiri said there’s a perception that Boston Children’s is “infallible.”
“Children’s has great reputation. They know what they’re doing,” Ianiri said. “If they say parents are over-medicalizing, or whatever, the [Department of Children and Families] is just not equipped to [counter these claims]. My experience is they just don’t get it.”
Even Dr. Eli Newberger, who founded the Boston Children’s Hospital child protection team more than four decades ago, told the Globe “doctors in this new specialty have enormous and really unchecked power”:
As an expert witness in cases around the country, Newberger said he’s seen a tendency for state child-welfare agencies to be “overly credulous to hospitals” and for some child protection teams to show a “reflexive willingness to label and to punish,” especially educated mothers who are perceived as being too pushy.
The Pelletiers have been fighting to have their daughter’s custody returned for 10 months, with their most recent court date occurring Dec. 12. A decision is expected to come from a judge by Dec. 20.
Although Ianiri said it’s not unusual for such custody cases to take months, he did say it was a “tragedy” that this case has gone forward without any development or change.
“It’s really stagnant and I don’t really get it,” he said. “There has been so little progress.”
Part of this, Ianiri said, could be because when such a decision has been put in motion, it’s difficult to reverse it.
“The department has a hard time changing course, especially in a case like this that’s really high profile. Everyone’s position is hardened,” he said. “They tend to stick to the guns and rely on the experts at Children’s. There’s not a lot of independent thinking going at the department.”
With what he considers an increasing number of medical custody cases resulting from parents questioning medical experts, Ianiri said, “you’d think you’re living in the Soviet Union.”
The ‘next wave of psychiatry’
The missing piece of the puzzle (because Boston Children’s Hospital and the Department of Children and Families are not speaking out despite requests from TheBlaze), is “why.” What would the hospital have to gain if it didn’t truly believe it was doing what’s best for the child?
Katie Higgins, a woman who says she was a nurse in Boston Children’s Hospital’s psychiatric ward for five years in the mid-2000s, has some thoughts.
Higgins, who said she had filed a formal complaint with the Department of Mental Health regarding the hospital’s treatment of anorexic patients in 2009, said there seems to be a stereotype of who the hospital is targeting.
“You’ll see middle- to upper-middle class families. You’ll see families with good insurance,” Higgins said.
She believes diagnosis of psychosomatic disorders like somatoform, which is what Justina Pelletier is currently being treated for, is the “next wave of psychiatry that is going to wreak on our children.”
“Psychiatry is like a gold mine because so much of it is arbitrary and subjective,” she said. “It’s easy to get away with it. It’s easy to create a market and it’s easy to make millions of dollars.”
Hilliard, working on a masters in bioethics at Alden March Bioethics Institute, is investigating this “why” as well. But at this point, she said, “we don’t understand what their motivation is.”
‘A wake-up call’
To Ianiri, there’s a lesson to be learned here.
“I suppose the Pelletier case is a wake-up call,” Ianiri said. “There is this underside, a dark side to Children’s.”
“Parents need to understand there is that risk, especially in very complicated, unclear medical cases,” he continued. “They need to do their research, find out who specialists are and go in with their eyes wide open.
“[T]hey have decided to make this their campaign of terror. And they’re…successful unfortunately.”
God forbid you have a disagreement with someone at Children’s about the appropriate course for your child and you end up being told you need to leave hospital,” he said.
This isn’t to say that Boston Children’s Hospital, a world-renowned medical institution, isn’t to be trusted.
Even Hilliard, who has a bad taste left in her mouth from her experience with the hospital, hailed the expertise of some of the physicians, whom she said allowed her and her husband to have more time with their daughter while she was alive.
It’s the child protection team that Hilliard questions.
“For reasons not currently well understood, they have decided to make this their campaign of terror. And they’re very successful unfortunately,” she said.
For more analysis on this story, tune into The Glenn Beck Program tonight at 5 p.m. ET on TheBlaze TV. Try it for free.
The author of this story discussed it at length on Monday’s BlazeCast:
This story was update to correct the spelling of Jim Ianiri’s last name.