Out of more than 140,000 contestants vying to become the 2018 Gerber Spokesbaby, Lucas Warren from Georgia will be the first with Down Syndrome in the competition’s roughly 90 year history. And, I say, what took so long!
His mother, Cortney Warren, released this in a statement: “We hope this opportunity sheds light on the special needs community and educates people that with acceptance and support, individuals with special needs have the potential to change the world — just like our Lucas.”
Tweets of support saturated social media and the internet:
I am actually quite thrilled this apparently joyful child has been named the winner. It will help to dispel so many falsehoods perpetually placed in the public sphere on the topic. Sadly, when the subject of Down Syndrome - a genetic condition that is accompanied by characteristic facial features, low muscle tone and a somewhat elevated predisposition to certain health issues (see here) - hits center stage it routinely is in the context of prenatal testing and family planning.
But, an action like this helps to spotlight the wondrous contribution a child like Lucas makes to his family, community and now the nation. And how bright his future is.
Like most conditions, there are spectrums of impairment. A misperception abounds that children with Down Syndrome are all quite sick and profoundly limited. The reality is where some might be afflicted with the known cardiac symptoms they are at higher risk for, many are not and others are able to be effectively treated and followed.
I have had the distinct pleasure of being a doctor for children with Down Syndrome and an innumerable host of disorders. The role has been a privilege and taught me so much about resilience, life and the limitless potential in all of us. No child or person for that matter is without challenges and struggles, some are simply more readily observed on the surface. Some start earlier than others and some don’t reveal themselves until adulthood. Regardless of the nature of them, my life (and the lives of those the individual directly touches) has always been enhanced and the better for the experience.
Recently, I was asked something that stuck with me when I was interviewed by a news outlet about “testing for everything” prenatally and genetic testing, in general. The question was something like “What do you say to parents who say they want to know it all beforehand because they couldn’t handle having a sick child?”
The answer was less important since it is a highly personal discussion that would require individually and extensively addressing the specific fears that preoccupied a couple. What stayed with me more was the fact that our culture of perfection was disabling people’s belief in themselves about what they could or could not handle in life and the mere fact that fear has become such an epidemic. The question alone displayed a misunderstanding of how unpredictable the adventure of parenting is for everyone. Additionally, it underscored this false perception around what we think we can control. With good and bad big life changes, it is not uncommon for people to want to cling to what they think they can control as a coping mechanism to assuage some of the pervasive anxiety they have surrounding the transition.
But, we do them no favors when we fail to manage their expectations.
In my article The Misperceptions Of Getting ‘Tested For Everything’ In Medicine, I discuss the fallacy surrounding ruling out “everything.” It is impossible as the science for predicting many disorders is not there and spontaneous and acquired mutations or traumas are an actuality in the real world. Chasing “what ifs” usually perpetuates fear, anxiety and misplaced concern or worry. It is a false perception that such tests control our futures. While we worry so about what may happen, we tend to lose our ability to cope with what actually does and garner a false sense of security in the process.
Probabilities are funny things in healthcare. They are not resolute. They are not certainties. They shift with time, aging, medication use, co-morbidities and lifestyle changes to name a few. And, though some diseases can be eliminated from the worry list, others cannot. And a lot of luck in avoiding injury and the like should not be understated or undervalued.
Becoming a parent comes with no guarantees. Not before the birth or after. Not even as a parent to an adult child. Getting comfortable with ambiguity, a difficult task for most of us, will make for a more enjoyable, meaningful ride.