From Boston radio station WRKO to syndicated host Glenn Beck’s television show, our investigation into Justina Pelletier’s hospitalization has drawn national and international attention, from the UK to Australia, since it aired last week on Fox CT.
It centers on 15-year-old West Hartford girl, Justina Pelletier, diagnosed with mitochondrial disease years ago – a condition causing muscle pain and weakness. Then, nine months ago, she was admitted to Boston Children’s Hospital with the flu.
At BCH, 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.
When her parents, Lou and Linda Pelletier disagreed, they lost custody of Justina when the Massachusetts Department of Children and Families was called in after just four days. The parents haven’t had custody now, for nine months.
“It has worn us out every which way you can humanly think of, and then some”, says Lou Pelletier.
Mother, Linda, reads cards from Justina that say “believe.” But what has many in disbelief, is their lengthy legal battle with DCF to regain custody.
“So many people could have said ‘time out’. (If) Boston Children’s is so gung-ho on this diagnosis, yet nobody else believes in it, nobody else has been able to be brought in to contest it, her Tufts medical people, totally blocked out”, says Mr. Pelletier.
The Pelletier family still has upcoming court dates in Boston, where they hope to gain custody of Justina, but if they don’t, she could remain in DCF care until she’s eighteen.
Since Fox CT broke the story, Kevin Hall of the New England Citizens Commission on Human Rights, has started investigating and parents everywhere have also taken notice.
“We need people to understand that mitochondrial disease is a legitimate diagnosis. It’s a life-threatening, devastating diagnosis”, says Cristy Balcells, founder and director of www.mitoaction.org.
We talked to other doctors to learn more about mitochondrial disease.
“Most of these patients go through what we call the diagnostic odyssey and it might take many years but eventually some way or the other, they end up seeing the right person and the right diagnosis ends up being made”, says Dr. Amel Karaa of Massachusetts General Hospital.
The cost of Justina’s treatment and hospital stay are still unknown according to Justina’s long-time psychologist, Dean Hokanson.
Fox CT asked Hokanson who he thinks is paying for everything.
“I have no idea… but I’m sure it’s more than a million dollars to date”, he said.
The Massachusetts DCF has custody of Justina despite the fact that she’s a Connecticut resident.
We looked up the Boston Children’s Hospital “Patient and Family Rights” list, which says:
“In this hospital, you or your family have the right to… consult with a specialist at your request and expense”.
But the Pelletiers say that back in February, when Justina was first admitted to BCH, their requests to see Justina’s specialists at Tufts Medical Center were denied.
It all leaves Lou and Linda to wonder whether they’ll ever have custody of Justina again.
“It’s like you fall down into this rabbit hole… that… you can’t get out of”, says Lou Pelletier.
The Pelletiers have tried to have Massachusetts DCF at least transfer Justina to a Connecticut hospital, but that’s been denied. They’ve also been blocked from having Justina see a third-party hospital in-person, for a second opinion.
Again, both DCF and Boston Children’s declined to comment on the case before and after the Judge issued the gag order in November.
The family’s next court date is Dec. 5 in Boston.
If you missed our first report on Justina’s case, you can watch it at foxct.com/investigations.