Media Should Adopt Ethical Guidelines for Parents Who Publicize Dying Kids

In the summer of 2013, the parents of young Sarah Murnaghan launched a successful  social media

Sarah Murnaghan

campaign and court case to get lungs for their dying daughter, who suffered from cystic fibrosis.  They did so because donated lungs are in such short supply, that the medical protocols had placed other patients in front of her, who would have derived more benefit from them. Sarah's body rejected the lungs in less than four hours, but she was then given another pair.  The discarded lungs might have saved additional lives. Nearly a year later, Sarah is still ventilator dependent, at a cost to Medicaid of $15,000  a month, while other children, who remained on the list and received lungs after Sarah are back at school.  However, the Murnaghans and their supporters are using Sarah's "miraculous" recovery to pressure change in organ donation procedures.

A Nebraska mother has now turned to the Internet with the story of her one year old son suffering from a chromosomal disorder, who will die if she does not raise sufficient money for him to receive a lung transplant.  Medicaid has refused to pay for the surgery and the story has been picked up by ABC News.

But what is really going on here?  These parents are making darned sure that we don't find out, by publicizing their children's cases while keeping their medical records sealed.  In this way they can control the narrative, and make whatever claims they wish in terms of progress or miraculous recoveries.  Of course the public would still feel sorry for parents with a terminally ill child having  no real chance of recovery. But they wouldn't expend time nor money on such hopeless situations, which proffer a future of painful procedures, and expensive hospitalizations until the child finally succumbs. 

And then there is the case of thirteen year old Jahi McMath, who was declared brain-dead after complications from tonsil surgery in December 2013. Her parents launched a social media campaign to keep her on a ventilator " giving her time to wake up."   Within a week they had raised $53,000 on gofundme.com.  But those expenses were subsequently taken over by the Terry Schiavo Foundation.   The child's decomposing body is still hooked to a ventilator, while the parents continue to receive prayers and donations from around the country.  The "respected" Los Angeles Times had a momentary dip in journalistic sanity and published the photo of a manicured hand, which it claimed to be that of the brain-dead Jahi. It offered no independent verification that the photo was what it purported to be.

Unconfirmed hand of brain-dead Jahi McMath

What gave both the Jahi McMath, Sarah Murnaghan, and now the Nebraska social media campaigns legitimacy was the fact that they spilled over into the mainstream media, that is, the television networks and newspapers.  While it might be all but impossible to ban pleadings for dying children from the Internet, these cases should, at the very least, not be given further legitimacy by the print and television media.   I have therefore laid out a simple protocol for how such cases should be handled.

Minimal Journalistic Guidelines for Stories Involving Sick Children

1.  If the story has public health implications,  the parents must waive privacy rights in regard to the child's medical records in order to allow independent verification of the child's condition.  If permission is not given, legitimate media outlets should refuse to run the story.   

   
 2. The media should report who is paying for the medical procedures.