The titles and descriptions of the videos offer peeks at "ghost babies" and "aliens" and "monsters." The stills used to entice viewers to click are often grim images of pitiful beings who might not even be identifiable as human to those who are unfamiliar with the real stories behind the clips.
Close your eyes when you ear the cries of these children. Though some might seem weak, almost all sound just like the cute, chubby babies that are delivered in hospitals across the U.S. and often appear in celebratory videos announcing their births. Look again and you will see that the cries that sound so familiar, so normal are coming from children who have the misfortune to be born in places where healthcare is rudimentary and treatment for anything out of the ordinary is beyond the reach of all but the wealthiest citizens.
Many of these children suffer from very real conditions with less sensational names. Those tiny "frogs" and "aliens" suffer from anencephaly. The baby "ghosts" and "monsters" encased in carapaces are newborns crying to be fed and loved, but they had the bad fortune to be born with harlequin ichthyosis.
Instead of the sweetness of babyhood, they are exploited by websites that use page hits to sell advertising and website owners who bank on getting more eyes to their pages if they can lure viewers to their own version of a virtual freak show. Even worse, on the ground they are treated as oddities to entertain and titillate by adults who take advantage of the naivete and superstitions of those who view these small children with a mixture of fascination and fear and loathing.
Anencephaly is a rare birth defect that occurs in approximately three of every ten thousand pregnancies in the U.S. according to the Center for Disease Control and Prevention.
The CDC reports that "Anencephaly happens if the upper part of the neural tube does not close all the way. This often results in a baby being born without the front part of the brain (forebrain) and the thinking and coordinating part of the brain (cerebrum). The remaining parts of the brain are often not covered by bone or skin."
Videos of newborns with the birth defect are common fodder for popular media sharing sites such as Youtube. While some videos offer respectful, responsible clinical presentations created to educate the public about anencephaly, there are more than a few channels that feature videos of children with this disorder as "alien babies" or "frog children."
The prognoses for these infants have always been less than hopeful, but there have been parents willing to provide their children with the treatment needed to keep them alive. They lead lives where they are loved and afforded the same dignity as any other child.
Joana Shmitz Croxado and her husband chronicled their days with Baby Vitoria, who was born with anencephaly. Vitoria was a part of their lives from 2010 to 2012. In this example linked from their Youtube channel, Vitoria is cuddled and sung to by her father. The Croxados are not trying to expose Vitoria to curiosity seekers. Their aim is to teach viewers about anencephaly from the viewpoint of a parent. They reveal the challenges involved, and they show us a baby who is loved and who gives them joy. She is beautiful and precious to them and it doesn't take very long to see beyond the pathology to someone who is their little girl.
There are other examples of anencephalic children who are welcomed. They model the potential for a quality of life that includes being part of a family, being loved, simply being someone's baby. This makes what happens to those not lucky enough to have access to proper medical care so tragic.
A stark contrast to this would be this video from an unspecified source that has been shared by clinicians as footage of a live anencephalic birth and by gore and conspiracy sites as an alien or frog baby.
Warning: This video contains exposed organs and abusive behavior. Please read the description below before clicking on the link.
Anencephalic baby mishandled by doctors.
The video starts with the inevitable smart phone in frame taking pictures. The infant cries and writhes as he is held by one arm pulled behind him. As the baby gets increasingly agitated, the doctor pins both arms behind him so another doctor can point out his the lack of skull and exposed brain. The child gasps for air as he is laid on his back, then raised to a sitting position, after which he has a seizure. The doctor holding the baby lays the baby back and does chest compressions and the camera moves to a tight shot of the child's penis and flailing legs. The child lies gasping for air and the shot pans up to his face as someone begins to mock the child and says what sounds like "The Muppet Show!" The video cuts to another shot of the baby from behind. He is being held in a sitting position. As the infant squirms and whimpers, the shot pans over his exposed brain. He slumps, falls over on his side, has another seizure, and is subjected to more chest compressions. The final shot is of the child staring into the camera as a doctor continues to discuss his condition.
It is arguable that some corners of the internet have tapped into the mindset that made carnival sideshows popular in the late 19th to mid-20th centuries. What is even more concerning is what happens to these children when word of their births reaches the local public.
When I first learned about Baby Patro, I was not aware that there was a subset of internet culture that trafficked in footage of babies with birth defects. Digging into what was going on meant discovering page after page of links to children who, like the original example in Bangladesh, were objectified and gaped at rather than allowed dignity and kindness for the short time they were alive.
In many reports of the birth of Baby Patro in late 2016, it was noted that the infant's family accepted throngs of curious visitors to their home.
The baby's father had this to say when asked about curiosity seekers who want to have a look at their child:
"We have been getting a lot of visitors. Relatives, neighbours and even people from neighbouring villages have come to see our son. We are happy to host them all."
There is little footage of Baby Patro and no followup reports about his or his mother's condition. One short video released by the medical center where he was born shows him being dangled by his shoulders and loose skin for curious onlookers and the media to take pictures. The child's unsupported head is allowed to flop over and his expression suggests he is in distress. The brief clip ends with a flash going off in the baby's face. Given the highly edited view we are given of this situation, I can't help but wonder if he is okay.
What does it look like when a curious mob rushes a hospital or family home to see the latest unusual child?
It's not pretty. If you can watch the whole thing, you will see the mob surrounding this suffering child in the last quarter of this Youtube video.
What should be an intimate moment of care between mother and child is turned into a public spectacle.
For babies like these, there is no comfort. Their first days of life are not filled with moments that create tender familial bonds. There is little in the way of loving attention that is afforded these tiny, vulnerable people. In video after video, their suffering is ignored. They cry for care while they are laid out on display.
Do I fear that Baby Patro met a similar fate? Absolutely. In this case, the lack of further coverage speaks volumes. Where is he? How are the baby and his mother faring?
The Sad Irony
The nature of the treatment available to children with congenital conditions in the regions where the videos originate is chilling. What makes this especially tragic is the fact that some of the conditions are easily treatable if resources were afforded the medical centers where these babies are born. In Southeast Asia, harlequin ichthyosis is a death sentence. In other parts of the world it is a challenge, really more of an inconvenience. Young people who are entering adulthood have been sharing their lives and the prognosis for them is good.
I cannot help but wonder if the outcome for these children would have been very different if those who held the purse strings were more concerned about children everywhere getting fed, getting proper care and seeing kindness modeled by their elders. It would be easy to chalk it up to economics until one takes into consideration that a clinical visit and a tube of skin cream cost far less than a MOAB.
Why are we this way? When we see suffering, so many of us dismiss it as entertaining or in the case of Baby Patro, our compassion fails us and we see him in his condition as simply, "cute." It is shocking to me that so many people talk about him "stealing hearts across the globe." Some have commented about "how cute he is when he cries."
If he is "stealing hearts," why aren't we caring about him now? Do we want to hang on to the lie that he's happy to be hurting and old before his time? And what about the other babies whose misfortune have become our entertainment? Why aren't we asking what we can do in real terms to make sure another child doesn't lie on a table and cry in pain while people snap pictures and send videos of the latest "alien birth" to their social media accounts?
For what it's worth, I'll write about other stuff. There are a lot of subjects I want to tackle, but...BUT...I refuse to give up on learning the truth about Baby Patro. You shouldn't, either. What happened to him could happen here. In fact, the way our health care system is evolving in the U.S., we may be less than a generation away from our own crop of Baby Patros. As long as outlets and observers continue to use him and others like him to sugarcoat exploitation of the most vulnerable among us, as long as we stay complacent, we're headed down this terrible path.
God help those children and the future generations of babies in peril in our own country.
-Illustration of infant with ichthiosis by Internet Archive Book Images [No restrictions], via Wikimedia Commons
-Picture of X-ray of cephalic baby by Lucien Monfils (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons
- Image of Baby Patro appeared in the DailyMail.co.UK
-all videos linked are the property of the parties who published them on social media.
Except where otherwise noted, all contents of this blog are copyright 2017 Jas Faulkner and Zen Dixie.