It’s a medical “mystery” that has left a Connecticut family baffled and heartbroken.
After a long history of medical problems, a West Hartford teenager is now “trapped” inside a hospital with seemingly no way out.
FOX CT spent the past few months investigating the emotional case.
It has been a bitter custody battle, and nine months after it started, it’s still going on.
In December 2012, Justina Pelletier was an active 15-year-old girl who would go ice skating, laughed and spent time with her family.
But just two months later, her family says their nightmare began.
“[Exhales] It’s beyond any wildest nightmare that you could think of,” says Justina’s father, Lou Pelletier.
Her longtime West Hartford psychologist has also been following the case.
“It’s the most bizarre situation … I’ve ever been involved with,” says Dean Hokanson, the clinical psychologist who has worked with Justina the past five years.
Justina was diagnosed with mitochondrial disease a few years ago. It’s a genetic disorder that can cause loss of muscle coordination and weakness.
Despite that diagnosis she lived a normal life.
But last February, she also got the flu and was admitted to Boston Children’s Hospital to see her specialist.
Almost immediately, a different team of doctors delivered a different diagnosis, questioning the original diagnosis of mitochondrial disease.
“They came in, and they said we cannot take Justina out of the hospital. They called DCF,” says Linda Pelletier, Justina’s mother.
They said Justina had “somatoform disorder.”
In short, they were saying she suffered from a mental illness, not mitochondrial disease.
Her parents, Lou and Linda Pelletier, were escorted out of the hospital by security, and within four days, they lost custody of Justina.
In addition to working with Justina, Dean Hokanson also testified at one of the court proceedings.
“They were actually being accused of being too active in pursuing healthcare matters for their child,” says Hokanson.
“It is kidnapping,” says Lou Pelletier.
Boston Children’s Hospital refused to comment about the case, but internal discharge documents obtained by Fox CT provide insight into why the hospital called DCF.
An April report written by a Boston Children’s physician shows that the hospital pulled Justina off many of her prior medications when she was admitted.
“Due to concerns regarding Justina’s regressive behavior changes around her family, the multiple medical procedures and care episodes she has been through … and both parents’ resistance towards recommended treatment plans for Justina … a child protection team was convened.”
Before entering Boston Children’s Hospital, Justina was on several medications and had undergone complex surgeries. The Pelletiers say Boston Children’s accused them of “overmedicalizing” their daughter.
But the family showed Fox CT proof that every procedure and prescription was sanctioned by doctors, including Tufts Medical Center specialist Dr. Mark Korson.
Tufts wouldn’t let Korson talk to Fox CT, but the Pelletiers did provide an email that Korson sent to their attorney, referring to Boston Children’s Hospital, their team of doctors and the somatoform diagnosis.
“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch,” writes Dr. Korson.
Dr. Amel Karaa, who works at Mass. General Hospital, says conditions like mitochondrial disorder commonly lead to confusion for health care providers.
“A lot of social cases have been reported where the children were taken away from their parents by social services and the hospital because the medical team thought that the parents were causing this to their child,” says Dr. Karaa.
Back in Connecticut, the Pelletiers spend time reading letters from Justina.
“This one’s in her artwork,” says Justina’s sister, Jennifer, pointing to a folded note.
Nine months after she was admitted to Boston Children’s, Justina is still in the hospital, sneaking messages to her parents, hidden inside origami artwork.
“I know you trust in me. Don’t forget it. I love you more than everything in the whole world. Justina,” Linda Pelletier reads from one note.
The Massachusetts Department of Children and Families allows Justina’s parents just one hour-long visit per week and two twenty minute phone calls.
The Pelletiers are left fighting DCF in court, hoping to regain custody of their daughter, and watch her ice skate once again.
“Hospitals, be it this scenario or big picture, cannot just hide behind DCF to do their dirty work,” says Lou Pelletier.
Since our initial investigation, we’ve learned that the judge has issued a gag order in this case.
The Pelletiers’ next court date is Dec. 5.
Dec. 14 would mark exactly 10 months since they lost custody of Justina.