It has been over a year since 15-year-old Justina Pelletier was taken custody by the Boston’s Children’s Hospital. Her parents, Lou and Linda Pelletier, are still fighting to get their daughter back.
Years ago doctors diagnosed Justina with mitochondrial disease, which causes loss of muscle control. Despite this diagnosis, Justina was able to live a happy and relatively normal life with her family in Connecticut. She was very active and enjoyed various sports such as ice skating.
When Justina got the flu last February, she was taken to Boston Children’s Hospital. Doctors at Boston Children’s Hospital claimed that she has somatoform disorder, not mitochondrial disease. Somatoform disorder is a mental disorder — not a physical one, like mitochondrial disease.
After this diagnosis was made, the hospital ordered that Justina be taken off all of her mitochondrial and pain medication. Lou and Linda did not think this was the best plan of action and wanted to bring their daughter home. Officials would not allow that. The parents were subsequently escorted out of the hospital by security personnel. Only four days later, they found out they had lost custody of their daughter due to “both parents’ resistance towards recommended treatment plans” and “overmedicalizing” the girl. They are heartbroken and furious.
Justina’s case has the attention of many citizens around the nation, but it turns out there are other children in similar situations.
According to the Boston Globe, in the last 18 months Boston Children’s hospital took custody of children or seriously threatened to do so at least five times. The Globe reported, “It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a ‘parent-ectomy.’”
The Boston Globe reported that in most cases where hospitals take custody of a child, parents reject the suggested medical treatment. This typically occurs when doctors diagnose the child with a psychiatric disease, but the parents think the condition is a physical one.
Pediatrician Carole Jenny said, “If the parent won’t work with you, and you really think the child is suffering, you’ve got to act.”
Boston Childen’s Hospital took custody of one 5-year-old around the same time that Justina was admitted. Just like Lou and Linda, the girl’s parents were also escorted out of the facility by security. The 5-year-old’s first night in the hospital was the first time she had ever spent a night without a family member.
In another case, the hospital tried to take custody of Jessica Hilliard’s son Gabriel, who is being treated for mitochondrial disease. Hilliard said, “The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling.”
Boston Children’s Hospital and its representatives refuse to comment on any specific cases, but maintain that decisions are made in the child’s best interest in every case.
But who really knows what is in the child’s “best interest?” Critics of the hospitals’ actions argue that such decisions should be left up to parents.
Those who favor parents’ rights see taking custody as an absurd action where the hospital acts completely out-of-line. Such situations become even more controversial when the parents’ views are backed by other pediatricians.
In Justina’s case, for example, Dr. Mark Korson of Tufts Medical Center sided with Lou and Linda. Korson was previously a pediatrician for Justina and said in an email, “I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The (Boston Children’s Hospital) 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.”
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