Fatal Stress: Side-effects of a Broken System
by RNE submissions on 08/08/16
The family of a Pennsylvanian two-year old who received a heart transplant at 6 days old, was found dead in a murder suicide over the weekend.
The girl's family made national news recounting an ongoing struggle against specialty pharmacies and medical insurance to get their daughter's anti-rejection medications covered.
The family was also well-known for a blog, in which the girl's mother described on-going PTSD her family lived with in the wake of her daughter's heart transplant, and the endless battle to keep their child alive.
Although we don't currently know the exact reasons this family was murdered, what the patient and advocacy community does know, is that living life with a family member who has severe health needs creates incredible stress and tension in both family life, and also in family relationships. Whether it is caring for a family member with severe mental health problems, out-of-control developmental/behavioral issues, controversial medical diagnoses, chronic complications of a more common disorder, or one of the six-to-seven-thousand rare diseases afflicting Americans, caring for family members with severe illness creates serious, and in some cases life-threatening, levels of caregiver stress.
When families and caregivers must fight every hour, every day, all month, all year, to get medical supplies, medications, doctor appointments, proper medical care, health insurance, state programs, IEPs and specialized education, nursing care, and more.... it can destroy them.
In other words: People break.
Do we remember that?
When a child's life and a family's life are constantly on the verge of ending, people break.
When caregivers are torn between fighting with medical providers to achieve enough care, and worrying these same providers might decide the caregiver wants "too much" care (leading to possible accusations of Medical Abuse and DCF calls), people break.
When a special-needs child cannot get an education in the public schools, yet parents don't have the training or resources to educate them at home, people break.
When an ill or special-needs child is violent and out of control, and the only choices are live with it, or exile the child to an institution, people break.
When families are forced to provide 24/7 ICU-level care for ill children at home, with no sleep and no help, people break.
When a family's medical insurance company will not pay for life-sustaining care, and caregivers fight and fight and fight, only to lose again and again, people break.
Marriages break, finances break, families break, and sanity breaks.
Our medical system breaks people.
When are we as a country going to do something about this?
Click here to read the original story: http://www.nbcphiladelphia.com/news/local/Dead-Murder-Suicide-Berks-County-389398512.html?_osource=nbcnews_fb
