Lou and Linda Pelletier brought a suit for medical malpractice and violations of civil rights in a Suffolk County Court after their daughter Justina went through a massive ordeal with Boston Children’s Hospital (BCH). After arriving at BCH, their staff changed her diagnosis from a mitochondrial disease to a somatoform disorder. BCH informed the parents that they were discontinuing her medication for mitochondrial disease. Her parents strongly disagreed with the diagnosis and did not want her to be taken off of the medication.
The Pelletiers were familiar with mitochondrial disease symptoms because their oldest daughter struggled with the condition. One day Justina showed severe flulike symptoms and was taken by ambulance to the emergency department at BCH. A neurologist who examined her changed the diagnosis and placed her under the care of the neurology department. In the meanwhile, her parents made an appointment with a physician at Tufts Medical Center for a mitochondrial evaluation.
In State Custody
After learning of the change in diagnosis the parents rushed to BCH and demanded that she be discharged. The BCH staff then intervened with security and informed the parents that she would remain. The hospital also then made a decision to file a report with the Department of Children & Families (DCF). Justina then was ordered to remain in state custody as a legal battle ensued. Several months later the status of her custody with the state was changed from temporary to permanent. Justina was admitted to the inpatient psychiatric unit of the hospital and all decisions regarding her care would be made by the Massachusetts Department of Mental Health
Daughter Returns Home
After nearly two years Justina was returned to her family. The family says that the incident has caused “irreversible” damage to her health. She is undergoing continued physical and occupational therapy. The Pelletier’s have struggled to pay their attorney fees necessary to keep their lawsuit going. They feel that the incident is an example of a hospital abusing their power. Mr. Pelletier has since visited Washington D.C. to encourage lawmakers to implement measures that may prevent such occurrences from harming other families with children.
Children’s Hospital Response
The family has been extremely critical of BCH for requiring their daughter to remain in psychiatric custody. The BCH did issue a statement saying that they had a “legal duty” and that state administrators then “determine how to proceed”. The facility says they plan to thoroughly defend themselves in the case and emphasized their commitment to high standards of medical care.
Some of the facts regarding this condition include the following:
- Mitochondria are largely responsible for the production of energy in the body
- This condition results in the body’s inability to generate enough energy to properly function
- The condition is classified as chronic (long-term) and genetic
- The disease may exist in the body at birth; however, it has been known to surface later in life also
- These diseases progress over time and may ultimately be deadly
- Parts of the body that are commonly affected include eyes, ears, brain, nerves and many others
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