By Neil Swidey and Patricia Wen
First of two parts
Linda Pelletier with her daughter Justina at Boston Children’s Hospital, during one of her allowed weekly visits.
Just after midnight on a Sunday last February, Linda Pelletier climbed into the passenger seat of an ambulance as her ailing teenage daughter lay in the back. They headed for Boston Children’s Hospital, on the advice of one of the girl’s doctors. A crippling storm had dumped 3 feet of snow on parts of New England, and every time the ambulance began to fishtail, Pelletier gasped.
They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.
But now Justina’s speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death.
When the ambulance finally made it to Longwood Avenue and pulled into the driveway of one of the nation’s top pediatric hospitals, the mother thought, “I’m saved.” Her relief wouldn’t last long.
Justina had been sick on and off for several years. A team of respected doctors at Tufts Medical Center in Boston had been treating her for mitochondrial disease, a group of rare genetic disorders that affect how cells produce energy, often causing problems with the gut, brain, muscles and heart.
Justina had gone to Children’s Hospital this time because the girl’s main specialist at Tufts, Dr. Mark Korson, wanted Justina to be seen by her longtime gastroenterologist, who had recently moved from Tufts to Children’s.
But after Justina had been at Children’s for just three days, her new doctors changed course dramatically. During a tense meeting with Justina’s parents, the Children’s doctors said they believed their daughter’s problems were largely psychiatric, and they would be withdrawing several of the medications that her Tufts doctors had prescribed.
The parents — Linda in person and her husband, Lou, by phone from Connecticut — strongly objected. They complained that despite their repeated requests, Justina had still not been seen by her gastroenterologist. They became furious when the Children’s team informed the parents that they would be prohibited from seeking second opinions, including from Korson.
The next morning, Lou arrived at the hospital, still enraged. After conferring with his wife, he strode over to the ninth-floor neurology nurses’ station and introduced himself as Justina’s father.
“We have standing appointments for her at Tufts,” he said. “Enough is enough. We want her discharged.”
He assumed it was their right as Justina’s parents to remove their daughter and take her to the hospital of their choice. But behind the scenes, Children’s had contacted the state’s child protection agency to discuss filing “medical child abuse” charges, as doctors grew suspicious that the parents were harming Justina by interfering with her medical care and pushing for unnecessary treatments.
Now, as Lou scanned the neurology floor, he noticed that hospital security guards were blocking every exit, focusing their eyes on him.
* * *
Doctors disagree all the time over the diagnosis and treatment of patients, but Justina’s story reveals a new and remarkably contentious frontier in pediatric medicine. A difference of opinion among doctors at separate Boston hospitals escalated with stunning speed. Just a few days after Justina had arrived at Children’s on Sunday, Feb. 10, doctors were urging state child-protection officials to take emergency custody of the girl from her parents so that Justina would remain safe and get the care the hospital’s team recommended.
These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.