Complex Medical Conditions Do Not Equate Psychological Illness or Negligence: A Personal Experience that Parallels the Justina Pelletier Case

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For many people becoming a parent is an inherent and indescribable feeling that subconsciously transforms you into a fiercely protect caregiver. When your child becomes ill your natural inclination is to seek medical attention and abide by the doctor’s orders. However, if the illness is caused by a complex medical condition, sometimes the answers are not as easy to find. There comes a point where, after numerous attempts to find the answer, the burden of proof appears to be placed upon the families or even patient themselves.

With the embattled medical negligence case between the Pelletier family, Boston Children’s Hospital and Massachusetts Department of Child and Family Services (DCF), it brings to light the struggles of treating a complex and poorly understood medical condition, patient and family rights, and quality of life issues. I am not a medical expert, I am not a lawyer, and I do not know the Pelletier family. I am someone who struggles with a rare medical disorder, and thirty years ago I was Justina Pelletier.

In May of 1984 after numerous hospitalizations, tests, visits with specialists and multiple incidents of respiratory arrest, local doctors in collaboration with Boston Childrens Hospital were out of answers and filed a complaint against my parents with DCF. The complaint was based on unsubstantiated claims by someone who claimed to be an acquaintance. There was no home visit, there was no interview, or even a second opinion from an unaffiliated medical expert. My parents were accused of medical negligence even though they followed the advice of the pediatrician and the hospital’s attending physician.

Reading this report I found it not only to be inflammatory in nature but completely devoid of any factual evidence. There was no mediation or care plan developed between the hospital and my family, only threats echoed through the Department of Children and Family. When my father questioned the DCF case manager on the legitimacy of the accusations, her response was that she read the report and “she just knew”. While I understand the intended purpose of these “investigations” is to maintain the best interests of the child that is not what happened with my family and it doesn’t appear to be the case for the Pelletier’s.

When you look at the Justina Pelletier case it is completely mind boggling. It feels like there has to be something more to the story that’s not being told. How could a world renowned hospital and an agency whose sole purpose is to protect children – actually be the one responsible for the implied abuse and neglect? If you do not have firsthand experience it is hard to imagine. For my family and I however, it is hard to ignore the overwhelming compassion that builds with every press release.

Luckily in my case, my parents were able to reach an outside specialist who performed an emergency bronchoscopy – a procedure Children’s Hospital was capable of but failed to do – and located the source of my life threatening respiratory distress. A rare structural birth defect called an innominate artery caused my aorta to cross over my trachea, crushing it, and in conjunction with a smaller lung defect would have cost me my life had my parents not pushed for more answers. Approximately one month following the DCF investigation, surpassing typical life expectancy for the defect, I had lifesaving cardiac surgery at Massachusetts Eye and Ear Infirmary, one of the most world renowned teaching and surgical facilities for disorders of the head, neck and chest. Had the Department of Children and Family prevailed it would’ve killed me.

My health struggles did not end following the lifesaving surgery. After twenty years of multiple surgeries, injuries and various complications I was diagnosed with Ehlers Danlos Syndrome. The genetic specialists at Brigham and Women’s Hospital of Boston looked at my past medical history and comparing it with my clinical presentation decided that I fit the profile for the hypermobility subtype. The explanation of my defective collagen and its system wide affects helped not only verify my experiences, but helped me build a care plan with my team of specialists. In doing so, it helps ensure the best quality of life possible. Justina Pelletier along with all patients with complex medical problems, deserve this.

So called “doctor shopping” is a term thrown around when one seeks answers from multiple providers or seeking alternate treatment. Being proactive and seeking appropriate treatment is not doctor shopping. Complex medical conditions do not equate psychological imbalance or parental medical negligence. Now that the state of Massachusetts has been granted permanent custody of fifteen year old Justina, the irony is inescapable. If Justina’s condition is purely psychosomatic, as suggested by Boston Children’s Hospital, and her parents are supposedly to blame, how is it she continues to deteriorate whilst presenting with tangible physical symptoms? If her parents have not been permitted contact with her, surely there has to be a more logical answer? The fact of the matter is Justina Pelletier is being punished for being ill while the witch hunt against her family plays out on a national platform. My hope is that Justina is as fortunate as I was and receives the medical care she so desperately needs before it’s too late.

This is Justina’s condition under state ‘care’ . That must be one hell of a mind trick to be making up all these physical manifestations . Photo from guardian lv.com

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