Justina Goes Home

June 18, 2014 permalink

A judge has ordered Justina Pelletier out of state care and back to her family. The judge was the same one who condemned her to permanent wardship three months ago. The enormous publicity for Justina may have contributed to changing official attitudes.

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Elated teen says ‘I’m so excited’ to be heading home

By Neil Swidey and Patricia Wen | Globe staff June 17, 2014

Justina Pelletier is seen after hearing that she will be returned to her parents’ custody.

Patrick Mahoney

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.”

Source: Boston Globe