Connecticut parents may be interested in a recent case in Boston where child custody has been taken due to a disagreement in diagnosis. A couple whose children have been treated for a rare genetic disorder called mitochondrial disease took their 15 year-old daughter to Boston Children’s Hospital for consultation with a gastroenterologist. Doctors at Children’s disagreed with the diagnosis after she was admitted there, claiming she has a mental illness called somatoform disorder.
Somatoform disorder is suspected when there is no known cause for gastrointestinal symptoms and pain. The hospital called the Massachusetts Department of Children and Families who took custody of the 15 year-old and who is now in a psychiatric ward at the hospital. The parents are being accused of giving the girl ‘cues” on how to respond, doctor ‘shopping”, having ‘black and white thinking” and subjecting the girl to unnecessary treatments. A recent hearing extended the girl’s hospitalization, ordered a new investigation and placed a gag order.
Mitochondrial disorder support groups are expressing alarm at the actions and state that parents are becoming reluctant to seek treatment at Children’s although it is known for providing good care. One attorney has advised the parents that some physicians at the hospital do not believe mitochondrial disorder exists. There is also concern about doctors who have treated a child for a few days to trump a physician who has treated the patient for a year.
The case has important implications for families seeking medical care for their children, especially in cases of rare and unusual illnesses. The child’s best interests are paramount, but stripping custody from parents and placing a child in a psychiatric unit may have a paradoxical chilling effect on parents seeking medical care for children.
Source: Middletown Patch, “New Details Emerge in West Hartford Family’s Custody Dispute with Massachusetts DCF“, Cassandra Day, December 23, 2013