Birth Defect Awareness Killed by Sensational Media

Guest Blogger - J. C. Kuehn Miller

Originally posted at http://jckuehnmiller.wordpress.com/2014/10/24/birth-defect-awareness-killed-by-sensational-media/

 

Birth Defect Awareness Killed by Sensational Media

Sensational reporting is the death of certainty and social awareness. The reporters seek to please their editors. The editors wish to please the paper’s owners. The owners want to make money. The public needs to be amused. Amusement is the undoing of truth.

 

enhanced-24058-1413910781-22On October 17th, 2014, Christian Faith Benge collapsed and died in an Ohio haunted house attraction. The mainstream media picked up the story several days later. The problem? They completely ignored the actual cause of her collapse. Christian was born with Congenital Diaphragmatic Hernia (CDH) along with other birth defects. These complications ultimately led to her enlarged heart stopping in the middle of the Halloween attraction.

 

 

 

 

 

 

 

 

 

 

CDH AWARENESS

CDH is a birth defect found in 1 out of every 2500 babies. It has a 50% mortality rate. The cause is not known.

Non-profit organization, CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support, is headquartered in Wake Forest, NC. For 19 years now, CHERUBS has advocated for and aided families with CDH babies. By completely ignoring the root cause of Christian’s death, the media struck a punishing blow to organizations like CHERUBS.

Instead of informing the public about this deadly defect, news sources spun the story to advertise Halloween activities. Instead of reporting the facts, papers opted for click-bait styled headlines. Instead of giving potential donors information, journalists capitalized on the real emotion felt by everyone hurt by this event.

Sensational headlines like the following did nothing but stir up strife for Christian’s family and friends.

  • “Scared to Death? Teen Has Fatal Heart Attack at Ohio Haunted House” by Hasani Gittens (NBC News)
  • “Did a Haunted House Scare This Teen to Death?” by Leah Rocketto (PopSugar)
  • “Ohio Teen With ‘Time Bomb’ Heart Condition Fatally Collapses While Walking Through Haunted House” by Rida Ahmed (HNGN)
  • “Family Denies Teen Was ‘Scared to Death’ at Haunted House” by Gillian Mohney (ABC News via Good Morning America)
  • “Christian Faith Benge Dies After Heart Stops In Haunted House” by Andres Jauregui (Huffington Post)
  • “Can You Be Scared to Death at a Halloween Haunted House?” by INSIDE EDITION

In that last article by INSIDE EDITION, the mother, Jean Benge, is quoted saying, “It’s not fair to us and the family to read the awful articles that she was scared to death,” yet they still chose to publish the article with that same incendiary phrase.

The blame does not solely rest on the media. They have money to make. The public starves for entertainment. They seek distractions from the reality of everyday life. Caught up in sensational phenomena like we saw with the ALS Ice Bucket Challenge, the public makes Idiocracy reminiscent videos rather than educating themselves about the actual disease.

TAKING BACK THE MEDIA

To regain ethical journalism, we must understand the symbiotic relationship between the media and the public. We, as a reading community, need to hold news outlets accountable for the quality of facts-based reporting. Likewise, the media needs to encourage our society to look at the facts, to think critically, and to embrace an awareness of their neighbors. If we can agree to fulfill this idea of accountability, then our social consciousness will be more in harmony than any other time in recent history.

In order to understand the weight of how detrimental fear-mongering and click-driven journalism really is, we must first look outward and then inward. Look outward to Christian Benge. Look at her life. Look at how hard she fought for 16 years. Imagine her mother, Jean Benge. For 16 years, she watched her beautiful daughter grow up- against all odds. Be empathetic to their suffering.

Now, look at the headlines. Look at how the news sources dealt so heartlessly with her story. How they turned a blind eye toward the cause of Christian’s death. How they could have brought CDH to the public eye. How would you like to be remembered as the girl who was “scared to death?” No, let us remember Christian Benge how we would want to be remembered: as an individual who succumbed to a lifelong struggle with a vastly unknown birth defect.

SAVE THE CHERUBS

Keep your thoughts and prayers with the Benge family. Keep your thoughts and prayers with all the CDH families across the globe.

If you want more information or want to donate toward CDH Awareness, Support, and Research, visit the CHERUBS website.

 

News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...

 
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2017 - News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

Read more...

Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

Read more...

3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

Read more...