When Benjamin was born in 2015 – six weeks early – his parents Kate and Clay were not prepared for the host of scary diagnoses that immediately followed. Ben has a clinical diagnosis of CHARGE Syndrome, a complex genetic syndrome that affects 1 in 10,000 children and often causes life-threatening birth defects. In Ben’s case, he was born with esophageal atresia (where the upper esophagus does not connect to the stomach) and a tracheoesophageal fistula (an abnormal connection between the esophagus and trachea).
These two conditions together make it difficult for Ben to swallow, requiring a feeding tube, and affect his body’s ability to manage lung secretions. Although he is legally deaf and blind, he hears well with hearing aids and can see with glasses. He has vesicoureteral reflux, a vulnerability to febrile seizures, and other issues that affect his balance, sense of smell, and muscle tone.
After a NICU stay at another hospital, Kate and Clay started to build relationships with the various specialists Ben’s care would require. Their first encounter with SSM Health Cardinal Glennon was through the expertise and patient-centered care provided by Dr. Dary Costa, Director of Pediatric Otolaryngology, and they immediately felt at ease. And based on that experience, Kate and Clay would eventually call SSM Health Cardinal Glennon their home hospital.
In April of 2017, at just over two years old, Ben was admitted to SSM Health Cardinal Glennon’s PICU for the third time in five months due to respiratory illness. In his first 24 hours in the PICU, doctors and nurses accomplished nothing short of saving his life several times. “It’s terrifying to think what may have happened if we hadn’t been at Cardinal Glennon,” says Kate. “During his three week stay, we had a lot of time to discuss gaps that we needed to address so that our son could get healthy, grow, and live a fulfilling life outside of the hospital. One of our PICU nurses suggested we meet with the Complex Medical Care team.”
Fast forward two years and Ben has celebrated months without a hospital stay. He sees multiple specialists, including Otolaryngology, Immunology, Neurology, GI, Pulmonology/Sleep Medicine, Orthopedics, Ophthalmology, Nephrology, Urology and Endocrinology. “He is in preschool with peers, catching up developmentally, and one of the smartest, spunkiest, most hilarious four-year-olds we know,” says Kate. “All of our specialists are at Cardinal Glennon, and we coordinate all of Ben’s care with help of the Complex Medical Care team. With their leadership, we’ve uncovered an underlying immune deficiency and set up treatments to prevent recurrent infections that were hospitalizing Ben, connected with specialists at Boston Children’s and Cincinnati Children’s that specialize in Ben’s rare syndrome and birth defects, and optimized our ability to tackle curveballs that come with parenting a medically complex child.”