A baby who was born with a rare genetic disorder that causes facial deformities was given a poor prognosis by doctors and abandoned by his birth parents. However, he got a second chance at life when he was adopted by a Christian family who supported him through surgeries, an autism diagnosis, brutal bullying, and countless battles for acceptance.
Today, that man is 47-year-old Dr. Francis Joel Smith of Denver, Colorado, who is a medical research scientist, public speaker, and advocate for others with the same diagnosis as his: Treacher Collins syndrome.
For some, the wildly misunderstood condition is almost invisible, but for Smith it was life-threatening.
He told The Epoch Times: “At my birth, doctors thought I would die soon, and if I lived, I would be mentally retarded and unable to lead a normal life without hearing or speech due to my facial deformities.”
Given Up By His Birth Parents
Smith, who was named Hugh Dermot O'Connor, was born in Fort Wayne, Indiana, with no ears, eye sockets, or cheekbones, a cleft palate, and jaw deformities. Shortly after his birth, he needed emergency surgery to open his airway so that he could breathe. Bloomington Hospital transferred the baby boy to Riley Hospital for Children in Indianapolis where doctors performed his surgery.Once he was stable, he was diagnosed with the most severe form of Treacher Collins syndrome his doctors had ever seen.
“They said I would need a lot of surgical reconstruction of my face and jaw, a lot of speech therapy, special bone-conduction hearing aids, and other specialized work,” Smith said. “With all my challenges, the doctors did not hold out much hope for my survival, much less a normal, productive, intelligent life.”
Smith’s biological parents were academics from Ireland visiting the United States to do a sabbatical at Indiana University in Bloomington. As they couldn’t handle his serious medical needs or take him back home in his condition, they gave him up to the state of Indiana.
For the first three years of his life, Smith was fostered by an elderly African-American woman in Indianapolis who had an arrangement with Riley Hospital to care for sick babies. Just before Smith’s third birthday, the state found a Fort Wayne family who agreed to long-term foster care with the goal of adoption.
Perseverance
Besides bountiful love and care, Smith received two life-changing gifts from his adoptive family: faith and music.Smith said: “My parents and my siblings have encouraged me over the years to persevere, have a strong Christian faith, and strive towards my goals in life. My parents also discovered, when I was very young, that I possessed musical talents despite having no ears, and that I was naturally talented in playing the piano, so they encouraged that.”
To this day, Smith plays piano and violin, and the organ at his church.
Following his passions was no mean feat. Smith, who was an “intelligent, observant little boy,” knew he was different but he learned a lot from his parents’ thoughtful explanations of Treacher Collins. Unfortunately, strangers were not so kind.
“I was always stared at when out in public with my parents or in school,” Smith said. “Children were scared by my facial appearance, and adults assumed I was retarded or otherwise limited, and even pitied me ... my parents and I often faced discrimination and exclusion from schools, churches, and other places that could not handle my condition.”
Smith was crushed by bullies and underestimated by his teachers.
“I was regularly teased and bullied by classmates during elementary and middle school,” Smith said. “That devastated me emotionally, psychologically, and even physically.”
It wasn’t until he transferred to an “academically rigorous” high school that he was seen as being a gifted student. “I gained confidence, and accepted my condition as part of my life and identity,” he said.
To date, Smith has undergone 30 craniofacial reconstructive surgeries including cleft palate repairs, reconstruction of his lower eye sockets and cheekbones, multiple major upper and lower jaw reconstructions, building outer ears, and multiple bone-conduction hearing aid implants.
A Call From God
Smith responded to his lot in life with an irrepressible curiosity. As a child, he developed a strong interest in human anatomy. As a teenager, he heard a “call from God” to go into the medical field, especially in craniofacial anomalies. The discovery of the gene for Treacher Collins syndrome in the 1990s augmented his interest in genetics, DNA, and advances in surgical treatments of the syndrome.After studying biology at Purdue University for a bachelor’s and master’s, Smith applied to medical school but did not get in. He believes that God showed him another direction: a biomedical sciences program at King’s College London in England.
Smith said: “I had my first opportunity to study craniofacial science and do laboratory research in craniofacial genetics and embryology. This proved to be the right fit for me, as my professors encouraged me to go on to pursue a Ph.D. This I did at the University of California, San Francisco.”
Smith earned his “crowning achievement,” a Ph.D. in 2012. His dissertation research has educated other scientists and medical professionals about Treacher Collins syndrome and other craniofacial disorders, alongside giving Smith a platform for telling his story.
As an adult, Smith still struggles with breathing through an abnormally narrow airway; has trouble biting, chewing, and swallowing food; has a speech impediment; compromised hearing; and a lack of physical strength. He is legally blind in one eye, has age-related deterioration in the other, and wears glasses with a custom elastic strap since his surgically-grafted ears cannot support them.
‘Wonderfully Made’
“Besides my faith, what helped me stay positive and strong to overcome my challenges were my determination, persistence, and stubbornness, as well as the support of my family, friends, and colleagues,” he said. “Right now I’m having to lean more on God to guide me in whatever direction He wants to lead me while I’m between jobs/opportunities.”While not currently employed in a research science position, Smith is actively involved in writing, medical illustration, public speaking, and advocacy for both Treacher Collins and his other passion, the pro-life movement. Active in the church, he is also considering a possible religious vocation in the future, “should God call me in that direction.”
Smith began writing about his life experience with Treacher Collins in high school when he was invited to write a chapter for a children’s book.
He has also published nine journal articles in craniofacial research to date, and co-authored a memoir, “Wonderfully Made: The Dr. Francis Joel Smith PhD Story,” which was published in 2018.
“For years I had been contemplating writing my life story in a book,” he said. “In the early 2000s, I began writing down my memories of my childhood hospitalizations by hand in a blank journal-type book. I eventually expanded the scope of my writing to a full life story over the years.”
He met his co-author, a fellow Ph.D. student, who took on the challenge of writing his story with him. According to Smith, it was a project that took ten years.
Over the years, Smith has been speaking and lecturing on his condition and similar conditions to students, colleagues, and medical professionals around the world, including the United States, Canada, the UK, Europe, Brazil, Australia, and New Zealand.
He said: “The most inspiring feedback I have received from my speaking and lecturing is that sharing my life story has encouraged families of those with craniofacial differences and students, faculty, colleagues, and professionals have all said that I bring life to the subject with my own life experiences and thus have made my teaching memorable and inspiring.”
Another major achievement Smith has had is receiving an honorary Doctor of Laws, which was conferred by colleagues at the University of Dundee Dental School in Scotland in 2019, in recognition of his lifetime work in craniofacial advocacy and research.
Smith hopes, one day, to learn even more about his birth parents and any biological connections he may have in Ireland.
