A Snapshot of Massachusetts’ Broken CPS System:Justina Pelletier’s case UPDATEDand lawsuit

“Justina Pelletier’s mother collapsed and her father shouted in anger today after learning at a Boston courthouse that the Department of Children and Families wants to place their teenage daughter in foster care on Boston’s North Shore, according to a minister who represents the family.

The parents were also upset because they were told a gag order preventing them from talking to the media remains in place, said the Rev. Patrick Mahoney, head of the Washington, D.C.-based Christian Defense Coalition, a group that is helping the family.

Linda Pelletier fainted in the corridor outside the Boston Juvenile Court and was taken away on a stretcher to a local hospital. Her husband, Lou Pelletier, occasionally erupted into angry shouts. Reporters were restricted from the fourth floor of the Brooke Courthouse, where a hearing on Justina’s case was held, but could see the Pelletiers from a fifth-floor balcony across the courthouse atrium.

Mahoney said the parents were reacting after emerging from the closed-door hearing, which had lasted about two hours.

Mahoney said late this afternoon that Linda Pelletier had recovered fairly well from her fainting episode, and was expected to be released from Massachusetts General Hospital sometime later today. Mahoney was spending the afternoon with the Pelletier family, who are from West Hartford, Conn.

Justina has been caught in the middle of a high-profile medical dispute and child custody battle involving two major Boston hospitals, the state’s child protection agency, and the Pelletiers, who want to bring their daughter home.

The Globe profiled the Pelletiers and the issues raised by the case in a two-part series.

One issue before the judge in today’s hearing was whether Lou Pelletier should be held in contempt of court for violating a gag order. The teen’s father has recently given media interviews in which he expressed frustration with the quality of care his daughter is getting while in DCF custody, care that he has asserted has been nearly fatal for her.

The Pelletiers’ primary attorney declined comment, citing the gag order.

Mahoney said the parents were deeply upset after being told Justina Pelletier would be sent into foster care, and away from a Framingham residential facility where she has been living for the past month.

Mahoney said he was working to help the Pelletiers win back custody of Justina.

Prior to the Framingham placement, Justina spent about a year in the locked psychiatric ward at Boston Children’s Hospital despite the objections of her parents and in conflict with a diagnosis from Tufts Medical Center doctors that the teen suffered from mitochondrial disorder, the Globe has reported.

Mathew Staver, founder of Liberty Counsel, a conservative nonprofit legal group, said he now represents the Pelletiers in their effort to end the gag order imposed by the judge. He said the DCF was given two days to tell the judge whether they oppose allowing Staver to enter the case.

Officials at MitoAction, a nonprofit group raising awareness about mitochondrial disease, a rare condition, released a statement saying they had heard that a Boston judge had ordered the teenager to go into a “non-medical” facility in Merrimac.

It remained unclear just what the judge proposed at the hearing. However, typically a teenager like Justina, if viewed as medically stable, might go to a private foster home while also being required to attend some nearby day treatment and educational program.”

DCF seeks foster care for Conn. teen in medical dispute[The Boston Globe 2/24/14 By Patricia Wen]

“The Pelletiers have been fighting to regain custody of their 15-year-old daughter since February 2013, when she was taken to the emergency room at Boston Children’s Hospital for treatment of a mitochondrial disorder, which doctors at Tufts Medical Center had diagnosed two years earlier. But Boston Children’s doctors rejected the diagnosis, declaring her ailment was psychosomatic and then placing her in a psychiatric ward, where she remained until she was moved to a state residential facility last month.”

“Justina’s father said her condition is “rapidly declining” — her legs and stomach are swollen and she cannot walk.

“The legal tiddlywinks they’re playing with my daughter’s life is disgusting,” he said.

Another hearing is scheduled for March 17.“

Teen in Mass. medical dispute heads to foster care[Detroit Free Press 2/24/14 by Michael Winter, USA TODAY]

REFORM Puzzle Piece

Update: “Representative Marc Lombardo (R-Billerica) and Jim Lyons (R-Andover) are looking to have Justina Pelletier, the teen involved in a high profile custody case, released from DCF custody.

Lombardo and Lyons are circulating a Resolution of the House of Representatives, which asks DCF to start the process of releasing Pelletier to her parents.

“The self-stated goal of the Department of Children and Families is to strengthen the link between families. Removing a child from her family is reserved for only the most egregious circumstances where evidence of malicious intent, negligence or the blatant inability to care for the child is present. No such findings are present in this case,” Lombardo said in a release.

Justina will remain custody of the Department of Children and Families in foster care until her family’s next court date, scheduled for March 17.

Pelletier’s family appeared in court Monday to file motions to deny contempt and vacate a gag order. The family was visibly upset at the court appearance. Justina’s mother, Linda Pelletier, was seen laying on the ground crying.

The Connecticut teen was treated at Children’s Hospital in Boston for almost a year and was previously in Children’s locked psychiatric unit for treatment.

Pelletier was diagnosed with mitochondrial disease years ago – a condition causing muscle pain and weakness. Then, almost a year ago, she was admitted to Children’s with the flu.

At the hospital, her parents say a different set of doctors diagnosed her with “somatoform disorder,” in short, saying she suffered from a mental illness, not mitochondrial disease, and that her symptoms were psychologically induced.

When her parents reportedly disagreed and asked for a second opinion, they lost custody of their daughter. DCF was called in after just four days. The parents haven’t had custody since last February.

“The Pelletier case is a dispute between conflicting medical opinions,” Lyons said in a release. “In my opinion, the decision on which medical treatment to adopt should rest with the parents, not with DCF. The Department’s heavy-handed, unjustified interference with the rights of these parents is an example of what is wrong with this agency.”

The Resolution will be offered at the next Mass. House of Representatives session.”

Two Mass. reps ask DCF to release Justina Pelletier[My Fox Boston 2/26/14 By Ashley Troutman]

“Plans to transfer Justina Pelletier, the West Hartford teenager being held in a Boston facility against her parents’ wishes, to foster care have changed, a family representative said Wednesday.

She is going to be, for now, staying at Wayside,” said Patrick J. Mahoney, director of the Christian Defense Coalition, referring to Wayside Youth & Family Support Network in Framingham, Mass.

At the most recent custody hearing Monday, Mahoney said the court said it had decided to transfer Justina to a foster care facility, Shared Living Collaborative in Merrimack, Mass.

The Christian Defense Coalition, based in Washington, D.C., had been planning to hold a prayer vigil at the Shared Living Collaborative on Saturday. Mahoney said they will have the vigil and a news conference at the youth facility in Framingham instead.

Citing unnamed sources, The Boston Globe reported Wednesday that Shared Living Collaborative declined to accept Justina because of the national publicity that the case has received. Mahoney, who has been in contact with the Pelletier family about the case, said he couldn’t comment on why Justina won’t be transferred to the facility, citing a gag order that Judge Joseph Johnston has placed on all parties involved in the hearings.

The Pelletiers have been trying to regain custody of Justina since February 2013, when she was admitted to Boston Children’s Hospital, where she spent the rest of the year before being moved to Framingham.

The next hearing in the case is scheduled for March 17.”

Justina Pelletier Not Being Transferred To Foster Care For Now, Family Rep Says [The Courant 2/26/14 By William Weir]

Update 2: “The Massachusetts child-protection agency announced Friday that it is actively pursuing plans to return an ailing teenager at the center of a yearlong custody battle to her home state of Connecticut, in an apparent move to extricate itself from a drama in which the parents allege they have been unfairly stripped of their rights to make medical choices for their daughter.

The Department of Children and Families said it is also endorsing a plan to have Justina Pelletier’s medical care transferred back to Tufts Medical Center, which has long been a demand of her parents. Their attempt to move their daughter’s care a year ago from Boston Children’s Hospital to Tufts, where she had been treated previously, is what set in motion the events that led them to lose custody of the teenager.

As recently as Monday, state officials sought to have Pelletier, 15, moved to foster care in Merrimac and her medical care moved to UMass Memorial Medical Center in Worcester. “Our primary goal has always been the health and well-being of Justina,” said spokesman Alec Loftus, in the children’s agency’s first public comments on a case drawing national attention. “We want the parents to be able to work with the providers and courts to ultimately move Justina back to her home state of Connecticut.”

“The agency has also backed off its push to have the girl’s father held in contempt for speaking publicly about the case in violation of a juvenile judge’s gag order, Loftus said — in remarks that themselves may have defied the gag order. Loftus said it was dropping the gag-order complaint against Lou Pelletier.

But the potentially promising overture may yet lead nowhere — as has happened repeatedly. Justina’s father, reached by phone Friday morning on his way to a weekly visit with Justina at a Department of Children and Families office in Roxbury, initially reacted positively, though guardedly, when a Globe reporter told him about the agency’s announcement. Lou Pelletier said it was “a step in the right direction” but he needed to see concrete results.

Within a few hours, though, he was part of an angry public outburst against the agency, after he and his wife were initially denied their visit with their daughter. State officials, apparently motivated in part by spotting Fox News television cameras outside, put off the meeting.”

“Just when the teenager might move back to her home state has not been decided, nor is it known where she will live — whether at home in West Hartford, in a foster care placement, or at a residential facility. Gary Kleeblatt, spokesman for the child-protection agency in Connecticut, acknowledged that it had received a request from Massachusetts to “assess a resource in Connecticut for possible placement of Justina.” He said the state “is working with the Pelletier family to identify services they may need going forward.”

Several sources who have been involved in the case say many factors likely affected the Department of Children and Families’ decision to shift course. They include pressure from the national attention the case has generated and a petition circulating in the state Legislature, an acknowledgment that Justina’s condition has not improved to the degree that doctors and state officials had expected, and a determination by Massachusetts child protection officials and the juvenile court judge to force their counterparts in Connecticut to step up their involvement.

These sources said Judge Joseph Johnston has said he wants to see Justina’s case transferred to Connecticut.

“The judge has provided a path out of this conundrum, and DCF, having hit a wall, is taking advantage of the opportunity,” said one of the sources briefed on the case.

Gail Garinger, who heads the Office of the Child Advocate, which is a watchdog over DCF, said she was heartened by Friday’s announcement. “This is the best shot at getting everyone to work together and focus on Justina’s treatment and reunification,” Garinger said.

If Massachusetts officials had hoped to attract some good will from Justina’s parents based on Friday’s news, it did not seem to last long.

After the parents’ meeting with Justina was abruptly postponed, the Rev. Patrick Mahoney, head of the Washington-based Christian Defense Coalition, who says he represents the family, scheduled a news conference to air the Pelletiers’ grievances over the nearly-canceled visit. He insisted that the child-protection agency’s actions were grossly unfair, and that the parents had nothing to do with drawing the news cameras to the meeting, which was ultimately held later in the day.

“The Pelletiers didn’t invite them,” said Mahoney, whose group is one of several conservative Christian groups backing the Pelletiers.

Mahoney said that despite the agency’s announcement, his group is going ahead with a “Free Justina” vigil on Saturday outside the Framingham residential facility where the girl has lived for the past month, after spending nearly a year at Children’s Hospital.

The Pelletiers’ frequent sparring with clinicians over the years in Massachusetts and Connecticut — and their willingness to go public so often about their daughter’s situation — has been an ongoing concern for the courts and the Department of Children and Families. Such parental behavior can be at the heart of complaints of medical child abuse — a controversial, new term that was applied to the Pelletiers. These allegations refer to parents or caregivers seeking unnecessary and potentially harmful medical interventions for children.

A two-part series in the Globe in December about the Pelletier case, one of a handful of complex medical child abuse cases at Children’s in the past two years, showed that Justina’s parents had been questioned over the quality of their care for her, including pushing for invasive procedures and ignoring mental health issues.

After hearing extensive testimony, the juvenile court judge found earlier this year that the parents were unfit to handle many of Justina’s complex problems, say two sources briefed on the closed-door hearings. Also in the past two months, these sources say, the child-welfare agency in Connecticut, responding to a medical child abuse complaint filed last year, opened a case after finding sufficient reason for concern.

Justina’s parents have long rejected the suggestion they are unfit parents drawn to seek attention, saying they go to the media only as a last resort to seek help for the grave injustice their family has endured.

The parents insist their daughter’s chronic gastrointestinal problems and immobility in her legs relate to a rare metabolic illness, called mitochondrial disorder, for which she had been treated by Tufts physicians for a year. However, staff at Children’s, where Justina was brought last February after she almost stopped eating and walking, concluded after a few days that the girl’s symptoms were largely psychiatric in origin and announced plans to change her treatment plan.

When the parents rejected the psychiatric diagnosis and threatened to remove Justina from Children’s, staff filed medical child abuse allegations with the state. The parents asked for the girl’s Tufts metabolic specialist, Dr. Mark Korson, to be included in discussions about Justina’s care. However, Children’s and child-protection officials did little to involve Korson. As the months passed, the parents’ relationship with the state agency and Children’s grew only more contentious.

In addition to just when and where Justina will be moved, another looming issue is who will pay, Massachusetts or Connecticut, once she is moved. MassHealth, the state’s Medicaid insurance for the poor, typically pays for medical expenses for children in the custody of the state. But two sources briefed on the case say it remains unclear whether Connecticut’s Medicaid program will pay for Justina’s care if she returns to her home state.

The next juvenile court hearing on Pelletier’s case is March 17.”

Mass. agency works to return teen to Connecticut[Boston Globe 2/28/14 by Patricia Wen and Neil Swidey]

Update 3: “Juvenile judge Joseph Johnston approved an agreement between the Massachusetts Department of Children and Families (DCF) and the Pelletier family to drop the contempt charges against Lou Pelletier for speaking to the media as well as to dissolve the gag order and transfer Justina Pelletier’s medical care to Tufts Medical Center, where she was treated by Dr. Mark Korson 13 months ago before she went to the Boston Children’s Hospital ER.

“DCF needs to return custody to Justina Pelletier’s parents, and DCF should be held accountable for the tragic abuse inflicted by this incompetent agency on the family,” says Mat Staver, founder and chairman of Liberty Counsel.

“Inmates in Massachusetts are entitled to regular visits, education and medical care,” Staver says. “Justina has been treated worse by DCF than incarcerated felons. She has one-hour, supervised visitation per week, no education and abysmal medical care.”

“DCF has knowingly violated the federal Individuals with Disabilities Education Act because the agency has refused to provide Justina with any education for two academic years, let alone the education to which she is entitled to receive because of her learning disability,” Staver continues. “For 13 months, DCF has refused to allow any clergy to visit Justina. And on top of it all, DCF has lost track of 134 children in its custody. How can you trust a government agency that acts like this? Someone should be held accountable.””

In DCF Care, Justina Pelletier Suffering ‘Tragic Abuse’ and ‘Abysmal’ Medical Treatment[Charisma News 3.5.14 By Mark Overton]

Update 4: “Liberty Counsel is to follow every possible legal process to return Justina Pelletier to her parents in Connecticut so she can get medical care, access to a priest, and an education. This follows a court order late yesterday granting the Massachusetts Department of Children and Families (DCF) continued custody of the desperately ill teenager until at least June 20 this year. In a press release issued last night, the international nonprofit organization said it would be filing a habeas corpus petition or an appeal against the judge’s custody decision.

Mat Staver, chairman of the Florida-based Liberty Counsel and the lawyer who will lead the appeal, described the situation as a “tragedy” and said the DCF was holding Justina prisoner after they “essentially kidnapped” her in February last year. Staver said he had “never seen a more barbaric overreach by a state agency.” It was not acceptable that the court was yet again “kicking the can down the road,” he said.

The ongoing saga began when Lou and Linda Pelletier took their daughter, Justina to Boston Children’s Hospital (BCH) in February last year so she could be seen by gastroenterologist, Dr. Alejandro Flores who had previously treated her at Tufts Medical Center (also in Boston) for severe gastrointestinal problems caused by mitochondrial disease (mito). Instead doctors at BCH decided her problems were psychiatric and not medical, and changed the diagnosis to somatoform disorder, which is psychosomatic but with physical symptoms. Justina was not examined by Dr. Flores, who knew her medical history, and the doctors at Tufts were not consulted.

The court custody battle was initiated by the Pelletiers over a year ago; this is the first ruling in writing that has been issued by the judge, Joseph F. Johnston. The Pelletiers have been waiting for a final decision from Judge Johnston regarding custody since mid-December last year. He had postponed making any decision six times, until yesterday, when he issued the disposition order regarding the “care and protection of Justina Pelletier.”

It is understood that Staver’s application to be admitted officially onto the case as the Pelletier’s lawyer was also denied. He needs court approval because he is from another state and would be taking over from existing counsel, but has said that this is usually a formality. Nevertheless Staver was quick to announce his intention to appeal the judge’s DCF custody decision on behalf of Justina’s parents, stating that she has been refused “adequate medical care,” access to “clergy or communion,” and has not been given “any meaningful education” in the past 13 months.

Judge Johnston’s Disposition Order

Judge Johnston outlined the history of the case and his findings in a four-page written ruling faxed to relevant parties, ultimately stating that he was granting continued custody of Justina to the MA DCF. This order was subject to “the parties right to a review and redetermination” six months from December 20, 2013, which is when the custody case ended and the decision regarding custody should have been made. So the ruling is not “permanent” as stated in some media reports.

Judge Johnston repeated the finding he made on December 20, 2013, that there was “clear and convincing evidence” that Justina was “a child in need of care and protection” because of the “conduct and inability of her parents” to provide for her “necessary and proper physical, mental, and emotional development.”

He ruled that it was necessary for “the parents” to be psychologically and clinically evaluated by the Connecticut DCF. However he stated throughout the report that the CT DCF has refused to become involved in the case from day one. Firstly it refused to accept the case when it was originally filed in Massachusetts 13 months ago, he said. Then it refused to take action when the MA DCF filed a “report of neglect of Justina” by her parents, maintaining the case was “under investigation.” Although the CT DCF notified the court in December that it had “substantiated the parents for neglect,” it would not take responsibility for the case and declined to file in the Connecticut court. In February it was agreed by all parties, including Lou and Linda Pelletier, that the CT DCF would be given temporary custody of Justina Pelletier pending transfer of the case to her home state, he said. But the Connecticut court refused to get involved stating there was no action pending in Connecticut.

The judge maintained that Justina was “ready for discharge” from BCH in June 2013, but was not discharged because her parents “significantly hampered” efforts of the MA DCF to find somewhere suitable to place her. He claimed that since “adjudication,” when the custody case had been heard and a finding was to be given, he had considered granting the Pelletiers “conditional custody.” He said he had decided not to due to the parents’ conduct that included verbal abuse, calling hospital personnel “Nazis,” using “profanity directed at the MA DCF personnel in Justina’s presence,” and claiming “the hospital was punishing and killing Justina.” He also blamed the Pelletiers for the inability of the DCF to be able to place her in a facility in Connecticut, where she would be close to home.

The judge ended the ruling by stating that the MA DCF must make “heightened efforts” to transfer Justina to Connecticut and transfer “both the clinical and legal case to Connecticut.” The court would, he said continue to “assist in the return of Justina to her home state of Connecticut.”

Lou Pelletier Speaks Out

Directly after Judge Johnston’s custody ruling was released, Lou Pelletier was interviewed on Fox TV in Boston. He said he was “very angry” but not surprised because this judge had continually ignored overwhelming evidence. He said Justina needed to be home, because “she is mentally, and more importantly, physically dying” under the care of the state of Massachusetts, the BCH and the MA DCF.

Asked why this was happening, he said, “It’s happening because it can!” All the hospital has to do is have its child protection team call the DCF; and in Massachusetts, the DCF does not have its own medical director which they are required to by law, so they rely on BCH. There were two reasons the child protection team stepped in to their case, he said. Firstly they were not prepared to follow the hospital’s protocol by agreeing Justina be taken off all her medication (including a vitamin cocktail and medicine for a rapid heart rate) – “which no sane person would do.” Secondly, because they were accused of “medical child abuse.” He said Justina had two surgeries, one to remove a congenital band that had become wrapped around her colon and appendix several years ago. The other was to insert a port into her colon. These procedures and all other medication had been prescribed by doctors at Tufts and approved by insurance, he said.

On a positive note, he said the ground swell of support had reached record numbers, with between 13 to 15 million hits on Twitter because, “the country is fed-up with what is happening.” He said “it is a national tragedy” that happens in some hospital every day. People “go down this rabbit hole with no recourse to get recovery.” At least by making people aware of what was happening, they could not ignore Justina’s declining physical condition, he said.

Lou Pelletier said the whole situation was an “infringement of our parental rights” and that the Government was “intruding into people’s lives for no reason.” He said he had absolutely no doubt that Justina suffers from mito, especially since her older sister Jessica has the same condition – confirmed by a muscle biopsy.

Commenting on their decision to appeal the judge’s DCF custody decision, the father of Justina Pelletier said they would go to Massachusetts Supreme Court, the Federal Court, and to the court of public opinion. “The country is enraged” and all parents need to be aware of what is happening, he said.”

Parents of Justina Pelletier to Appeal Judge’s DCF Custody Decision [Liberty Voice 3/26/14 by Penny Swift]

“Former Harvard law professor and high-profile lawyer Alan Dershowitz will represent 15-year-old Justina Pelletier as her parents attempt to regain custody after a heated court battle that resulted in her placement with the Department of Children and Families last week.

“I’d like to help out,” he said on Fox News’ “Huckabee” Saturday night.

This week, Dershowitz confirmed he was in talks with Pelletier’s parents.

“I have reached out to one of the family’s representatives, and we are trying to set up a discussion on how to proceed,” Dershowitz told FoxNews.com Tuesday.

Dershowitz said he believes the case is an important one, and he’s interested in working on a pro bono basis with the family’s current legal team to address “broader Constitutional issues.”

“When you hear about a case like this you scratch your head and you say ‘something else must be going on,'” he said on “Huckabee.”

Justina Pelletier had been undergoing regular treatment for mitochondrial disease by doctors at Tufts Medical Center in Boston, where she was diagnosed in 2011. When she began having gastrointestinal problems, Pelletier’s attorney Phil Moran said her doctor, Mark Korson, advised the family to visit Dr. Alejandro Flores at Boston Children’s Hospital, who she’d seen before.

Because she was in a wheelchair and a heavy snow was falling at the time, Justina was taken to the hospital by ambulance. The ambulance took her to the emergency room, where another resident “declared this was his case” and “refused to send her to Dr. Flores,” according to Moran.

The unnamed resident called a psychologist re-diagnosed Justina “within 25 minutes,” according to Moran, with somatoform — a psychosomatic disorder — because they thought the girl’s symptoms were psychological, not physical.

The Pelletiers refused Boston Children’s treatment plan for their daughter and tried to check her out of the hospital on Feb. 14, 2013 to take her back to Tufts, but the hospital refused.

The hospital staff called the state and accused Justina’s parents, Lou and Linda, of medical child abuse, and kept her in the hospital’s psychiatric ward for nearly a year.

Last week, juvenile court judge Joseph Johnston awarded the Massachusetts Department of Children and Families “permanent” custody of Justina.

“If two distinguished medical centers have different diagnoses, it should be the parents, not the state, that determines the course of treatment,” Dershowitz said

He also hopes to get to the bottom of the gag order the judge imposed on the parents, which stipulated they could not talk to the press during the proceedings. He said it was “without a doubt unconstitutional.”

Lou and Linda Pelletier said their daughter’s condition has worsened significantly since her mitochondrial treatment stopped, and getting her back on it is crucial for her health.

“She hasn’t had any blood tests in 13 months,” Linda Pelletier said. “We learned yesterday that she has a urinary tract infection.””

Justina Pelletier: Alan Dershowitz to Represent Teen in Custody Fight[Newsmax 4/2/14 by Nick Sanchez]

Update 5: “A teen at the center of a custody battle that has made national headlines was moved to a facility in her home state Monday.

A spokesperson for the family of Justina Pelletier confirmed she was moved to the JRI Susan Wayne Center for Excellence in Thompson, Conn.

Last week, Health and Human Services Secretary John Polanowicz outlined a reunification plan for the family. He says DCF will support the return of custody to Justina’s parents once they’ve met four conditions. The conditions include attending visits with Justina at JRI, following through with the Tufts Medical Center care plan, participating in family therapy, and meeting with DCF to review progress.

Justina Pelletier moved to Conn. Facility[My FOX Boston 5/12/14]

Update 6:”Massachusetts child welfare officials have asked a judge to return a teenage girl from Connecticut at the center of a custody dispute based on conflicting medical diagnoses to her parents.

The Boston Globe (http://bit.ly/1lkkSxb ) reports that the Department of Children and Families last week said 15-year-old Justina Pelletier’s (pell-uh-TEERZ’) parents have met the conditions asked of them. Attorneys for the Pelletiers, of West Hartford, Connecticut, were notified Monday.

Judge Joseph Johnston had given Massachusetts permanent custody of Justina in March, after a public battle involving dueling diagnoses from doctors at Boston Children’s Hospital and Tufts Medical Center, and allegations of medical child abuse against her parents.

Conditions included following up on a Tufts care plan for Justina and participation in family therapy.

It was not immediately clear when the judge would rule.”

 

Massachusetts child welfare officials ask judge to return Connecticut teen to her parents[The Republic 6/10/14 by The Associated Press]

Update 7:“A Juvenile court judge has ordered the Massachusetts Department of Children and Family to return Justina Pelletier to her parents,according to the Boston Globe.

The Globe reports:

“I find that the parties have shown by credible evidence that circumstances have changed since the adjudication on Dec. 20, 2013, that Justina is a child in need of care and protection pursuant to G.L. c. 199, 24-26.,” Judge Joseph Johnston wrote in the ruling. “Effective Wednesday, June 18, 2014, this care and protection petition is dismissed and custody of Justina is returned to her parents, Lou and Linda Pelletier.”

Pelletier was placed in DCF custody after doctors at Children’s Hospital expressed concern that her parents were demanding unnecessary and potentially harmful treatment for their daughter, a charge the parents and other doctors have vociferously denied.”

Boston Globe: Judge Orders DCF to Return Justina Pelletier to Parents[Boston Globe 6/17/14 by Roberto Scalese]

Update 8:“Connecticut teenager Justina Pelletier spent 16 months and two birthdays in state custody as the central but largely off-stage player in an explosive drama involving parents’ rights and the controversial new field of medical child abuse. Now she is going home.

On Wednesday, the 16-year-old girl is expected to return to her parents’ custody and the family’s home in West Hartford, Conn., following a ruling by the same Massachusetts juvenile court judge who originally removed her from her parents’ care.

I’m so happy. I’m so excited, oh, my gosh,” Justina said in an interview. “It’s such big news.”

In a two-page order issued Tuesday, Judge Joseph Johnston dismissed the child-protection case against Justina’s parents, Linda and Lou Pelletier, arguing that they and others had shown “credible evidence that circumstances have changed” since his decision to place Justina in the custody of the Massachusetts Department of Children and Families. He also wrote that in the month since Justina was moved to a residential facility in Thompson, Conn., her parents “have been cooperative and engaged in services,” including individual therapy for Justina and family therapy.

It was a remarkable change in tone from the judge’s ruling just three months earlier, when he determined the parents were unfit and awarded permanent custody to the state. At that time, he blasted the Pelletiers for behavior he contended was erratic and had doomed numerous attempts at compromise.

But that March ruling also seemed to spark intensified actions by Governor Deval Patrick’s top health official, John Polanowicz, to intervene in the highly contentious case that pivoted on dueling diagnoses from doctors at two of Boston’s top hospitals and attracted extensive national and even international attention.

Although her expected return will not be official until Wednesday, Justina, who has been using a wheelchair to get around since her admission to Boston Children’s Hospital in February 2013, was allowed to leave the residential facility Tuesday for what turned into a spontaneous celebration at the Outback Steakhouse in Auburn, Mass. By phone, in between bites of her hot fudge sundae, she said she could not believe she would finally be returning home for good. Asked how she plans to spend her first full day back home, she said she wants to play with her dogs, go in the family’s pool, and visit friends. She said she also wants to do something she has rarely been allowed to do during the last year spent in institutionalized care. “I want to sleep in,” she said.

Justina was out shopping with her mother Tuesday afternoon, without state supervision, as part of the increasingly expanded freedom her parents have been receiving over the past month, during her stay at the JRI Susan Wayne Center for Excellence.

 

Linda Pelletier said she screamed with joy when she heard the judge had decided to send her daughter home. “Unbelievable,” she said. “It’s been such a long journey.”

At least for now, Justina’s parents will be free of government oversight in the care of their daughter. The child protection agency in Connecticut, which last summer opened a medical child abuse case related to the family and later substantiated the claim, has indicated it will not be stepping into the case.

Gary Kleeblatt, spokesman for the Connecticut Department of Children and Families, said that investigation “will be closed” Wednesday when Justina returns home and is officially out of Massachusetts custody. He has said his agency did little on the case because Massachusetts was already providing services and addressing Justina’s various issues.

“We wish the family and Justina the very best,” he said, “and we stand ready to be of assistance if called upon.”

In 2011, Connecticut DCF had investigated an allegation of medical neglect made by members of Justina’s medical team but dismissed it a few weeks later. In his March ruling, Johnston had rebuked Connecticut child protection officials for failing to get more involved in overseeing the case, which involved a child in their state.

Justina’s story, documented in a two-part Globe series in December , has been unusual from the start. She exhibited a perplexing set of symptoms that divided specialists at two top Boston hospitals, and she was the focus of a child custody dispute straddling two states.

By the start of this year, the controversy saw a surprising collection of organizations taking up her cause. They included groups representing conservative Christians, online hacking activists, critics of psychotropic drug use, and advocates of greater awareness of hard-to-diagnose disorders.

As detailed in the Globe series, Justina’s mother rushed her to Boston Children’s Hospital in February 2013, complaining that her daughter was suffering from severe symptoms of mitochondrial disease. That is a group of rare genetic disorders affecting how cells produce energy, often causing problems with the gut, brain, muscles, and heart.

Dr. Mark Korson, chief of metabolism at Tufts, had been treating Justina for that disease for more than a year and had sent her to Children’s only because her Tufts gastroenterologist had recently moved there. The teen, who six weeks earlier had performed in an ice show, was barely able to walk and had virtually stopped eating by the time she showed up by ambulance at the Children’s emergency department on that snowy morning in February.

But within three days, the team at Children’s disputed that mitochondrial disease was the primary cause of her symptoms and began to suspect that her parents were blocking psychiatric care the doctors believed Justina badly needed. The clinicians at Children’s concluded that the girl suffered primarily from somatoform disorder, in which symptoms are real but there is no underlying physical cause. The parents complained that the Children’s team was dramatically changing Justina’s course of treatment without Korson’s involvement or even an examination by the gastroenterologist they had come to see.

When the parents said they wanted to discharge Justina from Children’s and take her to see Korson at Tufts, the hospital reported its suspicions of medical child abuse to the state. That relatively new term describes parents or other caregivers seeking unnecessary or potentially harmful medical interventions for children.

That prompted the state’s child protection agency to take emergency custody on Valentine’s Day 2013, a decision validated the next day by Johnston, the juvenile court judge.

The battle over Justina’s future was one of a handful of recent cases documented by the Globe that involved Children’s and a disputed diagnosis that led to parents losing custody or being threatened with that extreme step. These conflicts, which typically involved controversial diagnoses on the medical frontier, have exposed the consequences of the ongoing failure of the Massachusetts DCF to upgrade its medical expertise. The agency, many observers have argued, is simply not equipped to properly referee such cases.

More than seven years after recommendations from the Legislature and outside specialists that the child welfare agency hire a physician medical director to provide expertise in complex medical cases, DCF has yet to do that.

A spokeswoman for DCF said the agency does plan to enhance its medical team, which has traditionally consisted of a handful of nurses, by adding a new position called a director of integrated health services. But spokeswoman Cayenne Isaksen acknowledged that position would not have to be filled by a physician. In addition, she said, “the department is in the process of establishing an expert panel of doctors from a variety of disciplines who can provide additional support and consultation in difficult cases.”

Other children’s hospitals have found that the best approach for wading through the difficult waters of suspected medical child abuse is to convene a wide-ranging summit involving all the child’s key providers, including teachers and counselors, before making allegations to the state. That did not happen at Children’s Hospital in this case. Korson, Justina’s key specialist at Tufts, was not invited to participate in a meeting on the case at Children’s until well after that hospital had made its abuse allegations and after Children’s had moved Justina into its locked psychiatric ward.

Hospital spokesman Rob Graham said the parents’ actions prevented that from happening. “Boston Children’s standard of care in complex cases is to hold a summit that includes all the involved disciplines at Boston Children’s and external providers if available in person and by phone,” Graham said. “In this case, that work was underway, but the family escalated the situation making the initial summit impossible. Subsequently, Boston Children’s conducted extensive and ongoing communication and coordination with physicians across the Hospital and with external providers.”

Given its high-profile intensity, the Justina case has caused ripples beyond the hospitals involved.

Alice Newton, a pediatrician who serves as medical director of the Child Protection Program at Massachusetts General Hospital, previously served in that same position at Boston Children’s Hospital when the Justina case originally exploded there. She said MGH, which is continually refining its processes, has recently decided to add an extra step in its process before reporting suspicions of medical child abuse to the state.

After Mass. General’s child protection team has gathered information but before it reports its concerns to the state child welfare agency, that hospital will convene a “medical child abuse team.”

That team will consist of hospital representatives from various specialties and disciplines knowledgeable about the terrain, but who have not been involved in the case in question. She said this new formal step in the process, which MGH has not yet had occasion to employ, will provide a mechanism for additional review and vetting before escalation with the state occurs. “We understand the potential impact of reporting suspected medical child abuse to the state,” she said.

The judge and Boston Children’s were hardly the only parties to criticize Linda and Lou Pelletier for their behavior during the ordeal. But even their critics had a hard time showing any marked improvement in Justina’s physical condition during her long time out of her parents’ custody.

“It’s a wonderful feeling to see that this little girl will be able to go home,” said Philip Moran, the lawyer for Justina’s parents. “Hopefully, we’ll see major progress because this is what she really needs.””

Justina Pelletier heads home after judge ends state custody[Boston Globe 6/17/14 by Neil Swidey and Patricia Wen]

“The family of Justina Pelletier, the teenage girl at the center of a national parental rights dispute, vows to pursue legal action against the state of Massachusetts for what they say was essentially an abduction of their daughter.

Earlier this week, Massachusetts Juvenile Court Judge Joseph Johnston signed the order for Justina to go home following a 16-month dispute between her family and state officials. Lou Pelletier said in a text message, “This battle has been finally won. The WAR will not be won until we stop this from happening to ALL CHILDREN!!”

Pelletier, said, “It’s an unbelievably emotional day… I’m still shellshocked. It has been 16 months of torture, but finally justice is being done.”

The first order of business for the family is to get Justina well and evaluate her after her treatment, or lack therof, by state officials.  In her sixteen months under the “care” of the state, Justina Pelletier’s health deteriorated from being a vibrant figure skater to being confined to a wheelchair, unable to walk on her own.Pelletier says his daughter has “no feeling at all below her hips” and is now confined to a wheelchair.

In a picture, right, her father is shown having to carry her into their home.

Next, they are considering legal action. The Pelletiers are pursuing legal action against the Massachusetts officials who took custody of Justina.

“There’s going to be a Justina law,” because hospitals are “taking kids, using DCF to be their little wing man,” Pelletier said. “I’m going to be the guy that’s going to change that.”

Asked whether officials from the Connecticut Department of Children and Families had contacted him, Pelletier said the agency is “not in the picture, never wanted to be in the picture, will never be in the picture … no more government agencies.”

“They’re all gone, the case is shut down, the case is closed,” Liberty Counsel attorney Staver said.

Although the recent focus has been on getting Justina home, Staver said Liberty Counsel would continue to work with the family and weigh possible legal action against Massachusetts medical and state officials.

Lou Pelletier told MailOnline that he will not mince words now that he is no longer gagged and Justina is home.

Staver, in an email to LifeNews, said “the joy of Justina’s homecoming is dampened by a harsh reality. This young women has endured a torturous ordeal forced upon her by a powerful state agency which has left her physically and emotionally handicapped.”

“If you were in the Pelletier’s shoes, you would doubtless wage an aggressive legal fight to obtain justice.  That’s exactly what we did, and we are continuing to do, on the Pelletier family’s behalf,” he added. “This case has opened our eyes to a much larger problem of government agencies overreaching across the nation. Parental rights are being violated!””

Justina Pelletier’s Family Promises to Sue Massachusetts for Abducting Their Daughter[LifeNews 6/19/14 by Steven Ertlet]

Update 9: “WTIC-TV reporter Beau Berman, who was the first to break the story about the now 16-year-old whose parents were accused of medical child abuse and lost custody after they tried to discharge her from Boston Children’s Hospital when they disagreed with a diagnosis and treatment plan, recently obtained emails from government officialspertaining to the case through a Freedom of Information Act request.

Most of the emails are rather straight forward correspondences between staffers and officials about coverage of the case and if, or how, to respond to certain aspects of it appropriately.

For example, the first email WTIC obtained from Connecticut Gov. Dannel Malloy’s office that mentioned the case was in response to Bergman asking for a statement on Feb. 2, 2014, almost a year after Justina was taken into custody in Massachusetts.

David Bednarz, the governor’s spokesman wrote to other staff members, “Do we have anything on this that we can give him? Should we have DCF respond?” The office’s Director of Communications Andrew Doba said he wasn’t even sure the state’s [Department of Public Health] had any interaction with the Pelletier family. Afterward, staffer Samaia Hernandez weighed in and said the Department of Children and Families was handling the situation and that she thought they should “stay away from this.”

Fast forward to March. The Pelletiers had already been in and out of court for more than a year with Judge Joseph Johnston in Boston’s juvenile court division ruling each time that Justina would remain in DCF custody in Massachusetts.

This department had expressed a desire to return to Justina to Connecticut, transferring custody to Connecticut’s DCF. While Justina was eventually transferred to a facility in Connecticut, she remained in Massachusetts DCF custody during that time until her parents officially regained custody in June.

Still, one of the emails WTIC obtained sent on March 1 was from Connecticut DCF Commissioner Joette Katz who wrote to state officials, saying that the department was “[n]ot taking this child under the current circumstances… The parents’ reactions throughout this circus is proof positive that this is about them and not justina … it should be clear to everyone now that this case is a marathon and not a sprint.”

In a separate email, WTIC reported that Katz wrote: “This case is extremely complicated- both medically and legally. As you know I have been coordinating DCF’s response to Massachusetts authorities for some time and have been very careful in my public statements. Work at the agency and with the attorney general’s office also has been very carefully managed.”

Overall, WTIC obtained and sifted through nearly 100 emails and included some more contentfrom select correspondences in Berman’s report and posted the whole of them online

In response to some of the emails being made public, Lou Pelletier, Justina’s father, told WTIC his family was ”pretty appalled at some of the comments made in there by both the states of Massachusetts and Connecticut regarding the situation.” He added that they would respond “in due time.”

Other officials, such as Katz, would not talk further about the Pelletier case but told WTIC she believes the family has “endured a great deal over an extended period of time, and I wish the family and Justina well.”

Doba, Gov. Malloy’s head of communications, emphasized to WTIC that the office was aware of the case prior to the first email on Feb. 2 and also expressed a “tremendous amount of empathy for the Pelletiers,” adding that the office is “pleased that this situation has been resolved.””

Internal Gov’t Emails Regarding the Justina Pelletier Case Revealed[The Blaze 8/7/14 by Liz Klimas]

Update 10: “Justina Pelletier is back in the hospital, according to a family spokesman.

Pelletier, 16, spent 16 months at the center of a widely publicized custody battle between her family and the state of Massachusetts. She returned to her West Hartford home on June 18.

She was admitted to Yale-New Haven Hospital on Sept. 27 suffering from “serious pain” and gastrointestinal distress, according to a Facebook post by Rev. Patrick Mahoney of the Christian Defense Coalition, who has been acting as a spokesman for the Pelletier family.

Mahoney said Monday that Justina returned home to West Hartford Friday, but was re-admitted to Yale-New Haven Hospital around 2 a.m. Monday morning.

Justina Pelletier outside the Susan Wayne Center of Excellence in Thompson where she was staying while the court decided her case. She was released Wednesday morning. Her mother Linda Pelletier is driving her home to West Hartford.

“She’s having serious pain and serious GI issues, she was actually in Yale-New Haven a week ago for several days,” Mahoney said.

Mahoney said Justina’s parents, Lou and Linda Pelletier, are staying with her at the hospital, and her three sisters have been visiting when they’re not at work.

Lou Pelletier did not respond to a request for comment.

Justina was admitted to Boston Children’s Hospital in February 2013 after other doctors treated her and disagreed with the family that the girl’s symptoms, including weakness, headaches and abdominal pain, were caused by mitochondrial disease, a diagnosis she received at Tufts Medical Center in 2011.

Doctors at Boston Children’s said they thought her symptoms were psychologically induced, and diagnosed Pelletier with somatoform disorder, a mental disorder. Boston Children’s Hospital officials reported their suspicions of medical child abuse, and the state then refused to release Pelletier to her parents.

State officials and a Massachusetts judge eventually reached an agreement that allowed Justina to return home in June, and she appeared to be doing well for several months. The Pelletiers shared photos of Justina going on trips and making Fox News appearances on social media, and she was the guest of honor at a “Sparkling Homecoming Celebration” fundraiser on Aug. 17.”

“When Justina was released, her spirits were high, her emotions, everything was wonderful,” Mahoney said. “But I think a lot of the people across the country still didn’t realize that there were massive physical issues that Justina had to deal with.”

Mahoney said that for 16 months, “Justina was basically not treated … [the] protocol that they had was 180 degrees opposed to what should have been done with her care, so she still has very serious physical issues.”

Justina’s return home to a “loving, caring environment” has been beneficial, but “returning home was only a starting line, it wasn’t the end line,” Mahoney said.

Mahoney said it’s expected that Justina will remain hospitalized for the next few days, and “I think they’re determining the cause of some of these issues and to find out what’s the best way to move forward and that’s where they’re at right now.”

The Pelletier family will release more details on Justina’s condition “as soon as they have some concrete information,” Mahoney said.

Lou Pelletier has vowed to fight the medical and legal community that controlled custody of his daughter in Massachusetts, and Justina traveled to Washington, D.C. on July 16 to advocate for a bill named in her honor.

“Justina’s Law,” sponsored by U.S. Rep. Michele Bachmann, R-Minn., seeks to, “prohibit Federal funding of any treatment or research in which a ward of the State is subjected to greater than minimal risk to the individual’s health with no or minimal prospect of direct benefit.”

Laws governing the federal Department of Health and Human Services allow the department to conduct or provide funding for research that involves children who are wards of the state in specific circumstances.

During the custody battle involving the Pelletiers, Justina was for a time a ward of the State of Massachusetts.

Federal law allows research “involving greater than minimal risk and no prospect of direct benefit to individual subjects” only if “the risk represents a minor increase over minimal risk,” and the research is likely to yield information that “is of vital importance for the understanding or amelioration of the subjects’ disorder or condition.”

Lou Pelletier has accused the Massachusetts Department of Children and Families of colluding with Boston Children’s Hospital to retain custody of Justina and other children with certain medical conditions for research.

“At no time did Boston Children’s conduct research on the patient in question,” said Rob Graham, spokesman for Boston Children’s Hospital, in a written statement. “The allegations that research was conducted on the patient are baseless and patently false.”

Graham said the hospital “has been and continues to be a leader in ethical standards in research to protect children, including those in state custody.”

“Justina’s Law” has also been taken up by the nonprofit lobbying group Child Protection League Action, which was founded in 2013 in response to a Minnesota anti-bullying bill that the group argued promoted acceptance of LGBTQ individuals.

Lou Pelletier and daughter Jennifer Pelletier were speakers at a fundraiser for the group titled, “The Raging War On Kids, Launching The Resistance,” in Minnesota on Sept. 20, alongside Bachmann and conservative columnist Matt Barber”

Justina Pelletier Hospitalized, ‘In Serious Pain,’ Spokesman Says[The Courant 10/6/14 by Suzanne Carlson]

Update 11:“Justina Pelletier, the Connecticut teenager who returned to her parents’ home in June after a highly publicized battle with Boston Children’s Hospital and the state of Massachusetts, has been rehospitalized this fall with what her parents describe as acute gastrointestinal distress.

Lou Pelletier said his 16-year-old daughter began suffering symptoms that prompted her admission to Yale-New Haven Children’s Hospital, about 40 miles from their West Hartford home, in late September. He said testing and treatment there failed to address her ailments.

On Monday, her parents had Justina transferred to the Children’s Hospital of Philadelphia for additional tests. Her father said Justina, who ate robustly when she returned home six months ago, has been fed intravenously in recent weeks. It is unclear when Justina — whose parents had spent months in Massachusetts battling to get her released from a locked psychiatric unit at Boston Children’s — might return home from the Philadelphia hospital.

Lou Pelletier said he was pleased that staff at Yale-New Haven focused on physical causes and testing, as opposed to the position of the Boston Children’s team that Justina’s ongoing problems, including gastrointestinal distress and trouble walking, were largely psychiatric in origin. Clinicians at Boston Children’s accused the parents of medically negligent behavior in February 2013, and the state quickly moved in to take custody of Justina.

“It’s 100 percent medical,” said Pelletier; he and his wife, Linda, remain furious at Boston Children’s and the state’s child-protection agency for accusing them of medical child abuse. “There’s no psychological cause. Never has been and never is.”

 

The Pelletiers said they are confident Justina’s new hospital in Philadelphia, which vies with Boston Children’s in published rankings of the nation’s top pediatric hospitals, has the expertise to help the youngest of their four daughters.

Lou Pelletier said he and his wife had a very positive relationship with clinicians at Yale-New Haven, and the only reason for her transfer after about two months there was that the hospital in Philadelphia knows more about the disorders affecting their daughter.

A Yale-New Haven spokesman, Mark Dantonio, confirmed that Justina was released from the hospital Monday but declined to give details on her care, citing patient confidentiality. A spokesman for the Children’s Hospital of Philadelphia, Dana Wiedig, declined to comment on whether Justina is a patient there. However, a call Friday to the hospital’s general line confirmed that it has a patient with the name of Justina Pelletier.

Lou Pelletier maintains that his daughter suffers primarily from mitochondrial disorder, a rare metabolic condition that often affects multiple organs. The condition has become the target of controversy, with some doctors saying the disorder, while clearly affecting many patients, has turned into a catchall diagnosis overly applied to those with hard-to-explain symptoms.

Dr. Mark Korson, a specialist on mitochondrial disorder who had treated Justina at Tufts Medical Center, said the medical staff at Yale-New Haven had been giving him periodic updates on her case and asking for input. As the Globe reported in its two-part series on Justina’s case a year ago, Boston Children’s had been criticized for failing to involve Korson early on, despite his efforts to be included and his role in sending her there so she could be seen by her former Tufts gastroenterologist, who had moved to Children’s.

Korson, who received permission from Justina’s family to discuss her case with the Globe, said the Yale-New Haven medical staff told him they had done testing that indicated the teen’s lower colon was not working properly.

Korson left Tufts last month after the downtown Boston hospital eliminated his position and closed its metabolism clinic. He is joining a private educational initiative focused on metabolic disorders, including mitochondrial disease.

The latest developments indicate that much remains troubling and uncertain about the girl’s health. The teen who once performed in skating recitals still does not walk independently and is still plagued by severe intestinal problems.

In mid-June, Justina’s parents were celebrating their daughter’s return home after she had spent 16 months in the custody of the Massachusetts Department of Children and Families, most of it in a psychiatric unit of Boston Children’s Hospital.

Her lengthy ordeal in Massachusetts began in February 2013 when Justina’s mother brought the girl to the hospital’s emergency room, saying Justina had stopped eating and had trouble walking.

After a series of tests over a few days, staff concluded that Justina’s problems were largely psychiatric, and that while the symptoms may be real, there was no physical root cause.

Boston Children’s doctors noted that while being treated at Tufts she had several colonoscopies and had undergone a cecostomy, a surgery in which a tube was placed permanently in her intestines. This created a “button” port near her navel through which a solution could regularly be passed to force the colon to contract and flush her system.

The procedure was recommended and performed by a Tufts surgeon.

When the parents heard about Boston Children’s view of their daughter’s case, they moved to discharge her. The hospital then reported its suspicions of medical child abuse — a relatively new term describing parents or other caregivers who seek unnecessary or potentially harmful medical interventions for children — to the DCF.

When the state agency took custody of Justina, the girl’s parents fought back, hiring a lawyer and threatening legal action. They soon took their campaign public, and numerous groups accused Massachusetts officials of violating the rights of parents to control their child’s medical care. Earlier this year, the controversy began attracting an unusual collection of organizations taking up Justina’s case, including groups representing conservative Christians, online hacking activists, critics of psychotropic drugs, and advocates of greater awareness of hard-to-diagnose disorders.

After a series of negotiations and court hearings, a Suffolk Juvenile Court judge ultimately restored custody to the parents in June. By that time, Justina had spent 11 months at Boston Children’s, and five months at residential treatment facilities that offer extensive mental health counseling. She was eating regularly again, and her condition was stable, but she had no stunning turnaround in her intestinal system or mobility.

Lou Pelletier said that since Justina was returned to their home, they have not had interactions with Connecticut’s child-protection agency. A spokesman for the agency declined to comment on the case, saying it routinely does not make public its communications, if any, with families.

Child-protection specialists say that, in the absence of details about Justina’s current medical condition, it is impossible to interpret the latest series of events other than to conclude that she remains profoundly ill, given the length of her continued hospitalization.

They say that some critics of Justina’s parents may see the girl’s rehospitalizations as a sign that they have a harmful effect on their child’s health.

Before Justina was admitted to Boston Children’s in the winter of 2013, the couple had a history of strained relationships with some medical providers, and had been accused of doctor-shopping when they didn’t get the diagnosis they wanted.

But supporters may see Justina’s new hospital admissions as confirmation that she suffers from a serious case of mitochondrial disorder or some other complex medical condition, and that Boston Children’s doctors may have exacerbated her physical ailments by chasing psychiatric causes.

Lou Pelletier said he and his wife are working with a lawyer on a possible lawsuit against the Department of Children and Families and Boston Children’s, accusing them of harming their child physically — and ultimately psychologically — by keeping her away from home for 16 months.

An entry on a Facebook page called “A Miracle for Justina” also blames Boston Children’s, which it identifies as Bch. In an Oct. 28 posting, one of Justina’s sisters writes, “Didn’t get good news today . . . running more tests to figure out what the next step is. Bch you really hurt my sister . . . why would you harm a child so much?”

Some child-protection specialists said that, despite concerns about Justina’s continued health problems, her parents appear to be getting along better with her clinicians, and this is a positive development for the girl’s future.

“Maintaining a good working relationship with a family is good practice,” said Dr. Steven Boos, the medical director for the team that handles child protection cases at Bay State Medical Center in Springfield.

The girl’s father said he and his wife remain worried, but hopeful.

When Justina was released in June, her supporters showed her smiling and eating ice cream in a restaurant near her home. Now, however, she relies on intravenous fluids for nutrition in the hospital as doctors try to sort out her ailments, her father said.

He said he is optimistic that the Children’s Hospital of Philadelphia specialists can get Justina on the right track and “her health stabilized.”

“They are the mega-center of a lot of things.””

A difficult return to hospital for Justina Pelletier[The Boston Globe 12/7/14 by Patricia Wen and Neil Swidey]

Update 12:”Hoping to make parents the arbiter when medical professionals disagree about the care of a child and to avoid the repeat of a saga that embroiled the state’s child protection department and a family from Connecticut, lawmakers on Wednesday pushed for “Justina’s Law.”

The bill filed by Republican Rep. Marc Lombardo, of Billerica, would also prohibit parents from being charged with abuse or neglect if they are following a lawful course of treatment recommended by a medical or mental health provider.

Justina Pelletier, who was under treatment for mitochondrial disease at Tufts Medical Center, was transferred to Boston Children’s Hospital in February 2013, where medical staff there made a different diagnosis and ultimately ended her medication regime and moved her to a psychiatric unit, her father Lou Pelletier told the Judiciary Committee.

Relaying events that were covered in the media and drew national attention, Pelletier said he and his wife were ordered out of Children’s Hospital when they attempted to return their daughter to Tufts, and the Department of Children and Families gained custody of her.

In June 2014, Justina, now 17, was allowed to return home.”

 

Pelletier family pushes for passage of ‘Justina’s Law’

[Nashoba Publishing 6/24/15 by Andy Metzger]

Update 12:”Nearly two years after she returned home in the arms of her father, Justina Pelletier was back in the spotlight Thursday, speaking in a small, slightly shaky voice about the 16 months she spent in state custody, much of it in a locked psychiatric ward.

Justina, whose case drew national attention to the power of medical professionals to override parental rights, said she remains outraged that she was placed in state custody in 2013 after Boston Children’s Hospital accused her parents of interfering with her care.

The 17-year-old Connecticut clutched a purple stress ball, fingernails painted turquoise, as she spoke from a wheelchair in front of the State House, where her parents had convened a press conference to discuss the lawsuit they recently filed against Children’s Hospital.

“I’m very angry, and I just don’t understand how this happened, and I just really don’t want this to happen again to another family,” said Justina, who was with her parents, two of their attorneys, and a family spokesman from the Christian Defense Coalition.

She was taken into state custody three years ago after Children’s determined that her many health problems were the result of psychiatric issues and that her parents were pushing for her to undergo unnecessary treatment. The Pelletiers vehemently disagreed, pointing to the opinion of doctors at Tufts Medical Center, who said Justina suffers from mitochondrial disease, a rare genetic disorder that affects how cells produce energy.

On Thursday, Justina criticized her treatment at Children’s Hospital. “They really treated me badly,” she said, looking older and more mature than when she was last publicly seen, being carried into her home by her father after being released from state custody. “They didn’t really care. It was awful.”

Boston Children’s Hospital said in a statement that it “welcomes the opportunity to vigorously defend the medical care it provided to Justina Pelletier.”

“We are committed to the best interests of our patients’ health and well-being, according to the high standards we follow for every patient placed in our care,” the hospital said. “Out of respect for the patient’s privacy and the ongoing legal process, Boston Children’s is unable to provide further comment about the specific issues of this case at this time.”

Justina’s parents, Lou and Linda Pelletier, sued Children’s Hospital in Suffolk Superior Court this month, accusing the renowned institution and four of its doctors — Jurriaan Peters, Simona Bujoreanu, Alice Newton, and Colleen Ryan — of gross negligence and civil rights violations. The lawsuit seeks unspecified monetary damages.

“There’s been enormous financial impact on them,” said Kathy Jo Cook, a Boston attorney who is representing the Pelletiers in their lawsuit. “You can imagine if you couldn’t work for 18 months because all you were doing was driving back and forth from Connecticut to Children’s and trying to figure out how to get your child home.”

Last year, the Pelletiers filed for bankruptcy, according to court records.

They also faced foreclosure on their home but were ultimately able to settle their mortgage payments using money from a fund called “A Miracle for Justina” that was controlled by another daughter, Jennifer, court records show.

Lou Pelletier said he is suing Children’s Hospital because he doesn’t want other parents of children with complex medical problems to fear losing custody if they have to seek emergency medical care at a hospital.

“This is not about revenge,” Lou Pelletier said. “This is about making people accountable and making the medical community think twice before they take actions that can do damage to a child and a family that can be irreversible.”

Justina was being treated at Tufts Medical Center for mitochondrial disease when her parents brought her to Children’s Hospital with gastrointestinal problems in 2013.

Doctors at Children’s concluded that she was a victim of medical child abuse as a result of her parents interfering with her care.

A juvenile court judge, relying on the opinion of those doctors, removed Justina from her parents’ custody. She was placed in a locked psychiatric ward at the hospital, where, her parents say, she was denied an education and not allowed to attend Mass.

Children’s Hospital said that patients and their families have access to the hospital’s multifaith chaplains and tutors.

Justina’s case became a rallying point for Christian conservatives and parent activists, who accused the hospital and state officials of violating the Pelletiers’ rights to make medical decisions for their daughter.

Under mounting pressure, the same judge who had placed Justina in state custody returned her to her parents’ care in June 2014, saying there was “credible evidence that circumstances have changed” and that her parents “have been cooperative and engaged in services,” including individual therapy for the teen and family therapy.

Justina said that since returning home, she has undergone several surgeries and is “doing a lot better.” She said she rides horses to build strength and attends a school for children with learning disabilities.

“I just really, really want them to get what they deserve,” she said of the doctors at Children’s Hospital. “And I really, really want to walk again and skate.””

Parents of Justina Pelletier sue Boston Children’s Hospital [The Boston Globe 2/25/16 by Barry Levinson]