By DM Sullivan

This week, the long-delayed Justina Pelletier lawsuit goes to court.  Rare disease and complex medical families are watching very closely because since 2013 when Justina was taken into state custody after a disagreement between her parents and doctors at Boston Children’s Hospital, things have seemed to get worse not better.

Rare disease advocates and patient support groups will tell you that this dark secret in the rare community is a very real concern of parents whose children are diagnosed with what some consider “controversial diagnosis” such as Mitochondrial disease, Ehlers Danlos Syndrome, Dysautonomia, and Chronic Lyme disease.  Physicians and institutions often differ on how to best treat and manage these young patients, but parents should not be criminalized for following doctors’ orders and hospitals should not be able to so easily strip a child of a diagnosis made at another medical institution.  It is time to stop putting parents in the middle and traumatizing young vulnerable patients by separating them from their families.

And then there is the psych issue.

Mind-body medicine is a critical field and psychology and emotions have a large role to play in physical health. Most parents will agree that psych support is especially important when a child has chronic health issues.  However, behavioral disorders such as Munchausen by proxy or “factitious disorder” and conversion disorder are not as common as diagnosed.  According to an NIH study, it is believed that “in general medicine, there is a .05-2 percent rate of factitious disorder.”  So why are patient support groups seeing a rise in families being reported to child protective services?

 It is a complicated answer.

The creation of newer medical sub-specialties such as child abuse physician and hospitalist have added a new layer of care that can sometimes impact communication with the specialists who are trained in the specifics of the conditions that they treat.  A lack of awareness of conditions such as Ehlers Danlos, which is a defect in collagen, and has many co-morbid conditions also plays a role.  Once these families are flagged, it is the department of child protective services who decides custody, placement and ultimately parental fitness. This institution is grossly overworked and severely ill-equipped to properly place medically complex kids and facilitate these cases. Sadly, family separations often last longer than they should. 

There is nothing more important than protecting children.

The long-term health effects of adverse childhood experiences are pretty well documented. Sadly, many of these young patients who are passed around from specialist to specialist become self-fulfilling prophecies and depression, anxiety and PTSD is a common and somewhat predictable result. These kids and families need more supportive services and better trained collaborative care to help safely navigate the medical system.  Laws like Justina’s Law need to be put in place to better protect parents and children who have complex medical issues. Hospitals and physicians need to take a long, hard look at medical bias, professional rivalries, internal processes and oversight and financial factors that might also be part of the equation that impacts a complex patient’s ability to get fair, objective and appropriate medical care.

This month in a Boston courtroom, a light will shine on this dark underbelly of medicine by a family brave enough to stand up to the medical system that they depend on,  because they know it is broken.  They will subject themselves to the court of public opinion and social media trolls who will make comments and judgements on a very personal and painful time in their lives. They will take this stressful step because they know that it is important for someone to speak up for kids like Justina who have been violated and traumatized by a well-meaning but broken medical system. 

It is time for Justina to speak… and the rare and complex disease community is extremely grateful to her for doing so.

Share your thoughts, messages and experiences or email donna@tcapp.org