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.”
Neil Swidey can be reached at email@example.com.