Face to Face with the FLKs and the GORKS
Dr. Robert E. Cooke working with young boy.
By Rick Rader, MD, FAAIDD, FAADM, Editor-in-chief, Helen Journal
When I was a medical student in London, I was fortunate to perform a pediatric elective at the Great Ormond Street Hospital (informally GOSH, formerly the Hospital for Sick Children). Founded in 1852, it is one of the world’s first hospitals dedicated to caring for children. It has served as the model for pediatric training, research and specialty clinics throughout the world.
On my last day, I received a note from our professor and teaching consultant, Dr. Edmonton: “Rick, it was a pleasure having you on our service. Before you leave, be sure to check out the FLKs upstairs.”
I should note that it is very rare that the consultants have any contact with medical students. I should mention that his personal attention was not based on his thinking that I was a special or gifted student. The truth is that I helped him get parts for his 1968 Mustang (somewhat of a rarity in England). I helped keep his car running for the next several years.
It was not unusual to be instructed to see patients with abbreviated, initialed conditions or syndromes. I had been “invited” to check out the patient with ALL (acute lymphoblastic leukemia), BKA (below knee amputation), HAV (hepatitis A virus), ABS (abandoned child syndrome), DWM (Dandy-Walker malformation) among others.
“Beauty is not in the face; beauty is a light in the heart.”
The ward was a large, open area with beds arranged side by side, no private rooms or cubicles. I went from bed to bed, looking for the FLKs. It was apparent to the nurse sitting behind her desk that I was clueless. She offered, “Student, perhaps I can be of assistance.” I shared that Dr. Edmonton had suggested I come up to meet some of the FLKs. She raised her glasses to the top of her head and said, “Son if you can’t tell the ‘Funny Looking Kids’ from the normal ones, you might reconsider your career path.”
And as they say, “it came to light,” that FLKs were Funny Looking Kids. FLKs was a commonly-used clinical term that described atypical facial dysmorphology. It was not intended to be derogatory but as a clinical hint as to the basis of the syndrome. Many pediatric syndromes have specific characteristic facial features that allow clinicians to reasonably diagnose the patient from across the room. Examples are Apert syndrome (abnormal head shape, small upper jaw, and fusion of the fingers and toes); Crouzon syndrome (skull appears to be short in the front and the back; flat cheek bones and a flat nose are also typical); Pierre Robin syndrome (abnormalities in the facial bones, resulting in a smaller than normal lower jaw or receding chin).
And while medicine has never officially defined what “funny looking” is, thankfully the profession has come to grips with the notion that “words mirror the mind.” Finally, we celebrate the fact that most new medical students are appropriately offended when we share the story of the FLKs.
It’s not often that we can meet our “heroes.” I was fortunate in meeting one of mine.
Dr. Robert E. Cooke (1920-2014) was one of the founders of the field of behavioral and developmental pediatrics. Driven by a commitment to his own children, two of whom had “cri di chat “(cry of the cat) syndrome, he was a no-nonsense clinician, researcher, teacher and advocate.
Dr. Cook’s profound legacy includes groundbreaking medical research and visionary academic leadership, as well as innovative public policy. He was President John F. Kennedy’s choice to lead the Presidents Committee for Mental Retardation (now the Presidents Committee for People with Intellectual Disabilities). He founded Head Start and the National Institute for Child Health at the NIH. He enriched the lives of millions of children and their families. He was a professor and the pediatrician-in-chief at Johns Hopkins Hospital in the late 1950s.
In the later years of his life, I had the opportunity to meet and interview him. I asked him, of all his accomplishments, which was the one he most proud of. Without hesitation he said, “Getting the residents at Hopkins to stop using the term GORKS.”
It was obvious from my bewildered look that I was clueless. He explained that whenever the residents were assigned to treat a new pediatric patient without a definitive diagnosis, they would refer to the child as “one of those GORKS.” It was an acronym for God Only Really Knows. One of the more common features of the GORKS were novel facial features. Dr. Cooke also suspected that the residents assigned to the GORKS did not have the empathy that he demanded of his students. It was as if without a diagnosis, there was a distance that the residents created between them and the patient.
Dr. Cooke was able (through example, insistence and demands) to curtail the practice of referring to these patients as GORKS. It amazed me that of all the accomplishments of this world renowned and respected leader, he thought that eliminating the term GORKS was his greatest achievement. And perhaps it was.
Thankfully we have relegated the terms FLKs and GORKS to the waste bin of terminology. Unfortunately, we still have portrayed negative feelings about people with facial untypicalities.
People with facial deformities are considered “disabled” under the Americans with Disabilities Act (ADA). In the U.S., approximately 600,000 individuals have been diagnosed with a craniofacial condition. Each year, the faces of another 100,000 individuals are disfigured through accident or disease.
Approximately 10% of the population has a facial disfigurement, such as a scar, blemish, or deformity that severely affects the ability to lead a normal life, and 2 to 3% have a clearly visible blemish. They may experience depressive symptoms due to disfigurements and related life events. (Visual disfigurement and depression, Plast Surg Nurs 2004 Oct., Valente).
HELEN Journal salutes the ongoing and growing movement towards facial acceptance. We recognize the leaders from FACES: The National Craniofacial Association, myFACE, Facing the World, Children’s Craniofacial Association, About Face, The American Cleft Palate Craniofacial Association, Operation Smile, Little Baby Face Foundation, Changing Faces, Positive Exposure—and the thousands of parents, families and clinicians who promote full facial inclusion.
As photographers are fond of saying, "That's worth another shot." In this issue of HELEN Journal, we pay tribute to Rick Guidotti, the Founder of Positive Exposure who rewrote the book on "medical photography”. The editors of HELEN Journal thought this previously published article on medical photography would serve as a fitting complement to appreciating his work and the evolution of the art.
See: https://helenjournal.org/july-2022 (Say Cheese: A Brief History of Medical Photography, Helen Journal, July 2022, pages 36-39)
Photo: Patients in Ohio’s Cleveland State Mental Hospital - 1946. Photo by Mary Delaney Cooke
On Exposing the Positive
By Steve Perlman, DDS, MScD, Senior Special Project Editor, Helen Journal
Over a decade ago I received a phone call from a colleague at the University of Buffalo College of Medicine. She shared that she had just attended the most memorable lecture ever. It was not the typical educational program that virtually all medical students, residents, and faculty attend, but one that impacted everyone in the audience in a way they agreed they will never forget.
The speaker was Rick Guidotti, founder of Positive Exposure, a non-profit organization with the mission to encourage and promote a more empathetic and compassionate world for individuals stigmatized for their appearances, behaviors and disabilities. Rick’s vehicle for change was unorthodox—employing photography, film, community storytelling, education, and advocacy.
“Photography helps people to see.”
Realizing that our collective efforts relating to inclusion needed additional ammunition, new strategies and inroads, I knew I needed to connect with him. After an extended conversation, I knew that this was not simply a connection with a Renaissance thinker, but someone I would continue to consider a close friend for years to come.
Positive Exposure’s “Change how you see, See how you change” has impacted the lives of healthcare professionals, patients, children, and adults from all over the world. They have been touched and energized by Rick’s passion, artistic creativity, empathy, and enthusiasm. Whether you are exposed to the Pearls Project, Frame Library, countless exhibitions, lectures, and presentations, you will never look at beauty the same way.
As this month is Craniofacial Acceptance Month, HELEN: The Journal of Human Exceptionality would like to honor and recognize Rick Guidotti, an extraordinary human being, philanthropist, artist and humanitarian for his positivity and never-ending contributions to educate us. Positive Exposure needs to be integrated in the curriculum of every healthcare professional training. For patients and families, he is a true champion.
Rick, we at HELEN Journal salute you and celebrate you as a world healthcare hero and role model. Thank you for the long-awaited change!
