The Pelletier family is going through every parent’s worst nightmare. Their 15-year-old daughter, Justina, has been struggling with a rare disease that could lead to death. There is no cure for this disease, but despite the bleak prognosis, the Pelletier family has been seeing the best doctors on a regular basis in an attempt to treat their daughter.
During one of their most recent attempts to seek the best medical care available for their daughter, they were met with a series of unfortunate events. The Pelletier family had been bringing their daughter to Tufts Medical Center where she was being treated for Mitochondrial disease, which is a disease that attacks the mitochondria inside cells in the body. According to UMDF.org these organelles give the body 90% of the energy needed to “sustain life and support growth.” As the disease progresses, more and more cells begin to die and eventually entire organs cease functioning.
Justina began experiencing gastrointestinal problems, while under the care of physicians at Tufts for her disorder. The treating physician at Tufts recommended she see a gastroenterologist for the issue. Justina had previously been seen at Boston Children’s Hospital (BCH) by Dr. Alejandro Flores, a gastroenterologist, and her treating physician thought sending her back would be in her best interest to address the gastrointestinal issues.
The family was unable to take Justina in their car because the East Coast was experiencing horrible weather conditions and her wheelchair would not allow easy transportation in the snow. Justina was sent to BCH via ambulance and was forced to enter through the emergency room, despite the fact that she was there to see a specific doctor.
Once she entered the emergency room, everything changed. The doctor who admitted her refused to allow her to see the doctor to whom she had been referred and, after a brief consultation, determined she was suffering from psychosis rather than mitochondrial disease. The doctor then brought in a psychologist who diagnosed her with somatoform disorder, which causes the body to produce symptoms of a disease without identifiable physical cause. No further medical testing was done to determine if the original diagnosis of mitochondrial disease was accurate.
Instead, the doctor at BCH insisted that the parents cease medical treatments with the other hospital because he thought it was unnecessary. When they refused to do so, BCH contacted the Massachusetts Department of Family and Children (DFC), alleging the family was medically abusing their daughter.
Since then, DFC has taken custody of Justina and received permanent custody of the teen pending further hearings. The judge in the case has been frustrated with the parents’ lack of cooperation and has chastised them for making the case more complex. The parents violated a gag order put in place by the judge on the case and spoke with the media to get attention for the case in hopes that people would gather in support. This seemed to have the opposite effect where the judge was concerned, though the parents felt they needed to shed light on this injustice. Since then, the public has rallied in support of the parents, but the judge is less than pleased.
One can hardly blame the parents for being irate: their child was taken from their custody and refused the medical treatment she desperately needs. At this point the parents are afforded a weekly meeting with their daughter and have had to watch as she slowly deteriorates from this horrible disease. She has not been given the opportunities to attend any religious ceremonies nor has she been provided the education that other children her age are privy to. She is now two years behind her peers in school and her medical condition has only gotten worse. This case has been ongoing for over 13 months and there is still no end in sight.
One would hope that this situation could never happen, but the reality of it is sometimes Child Protective Services (the name of the analogous agency in Arizona) gets involved in cases where they are not needed. Though they must respond to these allegations, it is the hope of every parent who has a child with a rare illness that, once the report has been documented and investigated, the allegations will be dropped.
In Tempe, as well as around the state, Child Protective Services (CPS) can get involved in allegations of child abuse in many ways. Usually, an allegation is made through the CPS hotline, but CPS can also become involved if police are investigating an issue that involves children. According to A.R.S. 13-3620, certain people are “mandatory reporters.” These reporters are mandated by state law to report any reasonable suspicion they have of a minor being abused. Every state has these laws and it is likely Massachusetts has a similar law in place. Physicians, in Arizona as well as most states, are among those who are required to report these reasonable beliefs of abuse. For example, if a parent brought a child into Phoenix Children’s Hospital and the treating physician noticed bruises on the child’s back, but was treating a broken arm, the doctor may have a reasonable belief the child is being abused and contact CPS.
When CPS receives an allegation of abuse, such as the allegation made by the doctors at BCH, they follow internal protocol to decide whether the allegation needs to be investigated further. At this point, it is important to have any information regarding a rare disease available. Making sure everything is well-documented can be a parent’s saving grace. Though it does not always stop CPS from initiating an action to remove the child from the parent, it can be very beneficial when it comes time to face a judge.
Once a child has been removed, it is often a significant legal battle to get the child returned, and this process can take a substantial amount of time. We cannot assume the facts of the case, especially in this matter; however, often once it has been shown that a child has a rare disease and was being given the best of care, the courts respond by returning the child to the family. It is ghastly to think something like this could happen in Arizona, but it is a reality that parents with children who do not have well-known diseases often face.
For more information on CPS Removals click here.