The first twin, Grace Vanderlip, was born at 1:05 a.m. on that April morning 11 years ago in Women & Children’s Hospital. She was fine.
Then came the really anxious moment, just one minute later, when Conor made his first appearance. His parents, Colleen and Vincent Vanderlip, knew from an earlier sonogram and other tests that Conor had some serious jaw and swallowing problems, suggesting a potentially severe chromosomal disorder.
So several Women & Children’s doctors, including ear, nose and throat specialist Dr. Linda Brodsky, were waiting the instant Conor was born.
“I watched him being lifted up, and I thought everything was fine,” Vincent Vanderlip recalled.
But it wasn’t.
“He wasn’t breathing,” his father said. “His tongue was falling back, obstructing the airway, so he wasn’t breathing at all.”
Three doctors immediately took the infant into another area of the delivery room, hovered over him, determined that he needed an emergency tracheotomy and started that procedure within seconds.
Those doctors saved his life.
Thus began the long, often emotional and draining odyssey that has seen Conor Vanderlip, now 11, going from Women & Children’s to hospitals in New York City and Rochester that could better deal with his rare condition, known as Nager syndrome, which affects the development of his face, hands and arms.
Now he’s back in the warm, loving embrace of Women & Children’s for periodic treatment. Unlike other successful medical stories at the Bryant Street facility, this is a story about a hospital, in an era of tight budgets and cutbacks, hiring a pair of surgeons, Drs. Joli C. Chou and Paul Deitrick Jr., who specialize in oral and maxillofacial (jaw and face) surgery.
Such human stories are the whole point behind Tuesday’s annual Kids Day edition of The Buffalo News, which will see thousands of volunteers on street corners hawking the special $1 papers, each containing a four-page wraparound section devoted to the hospital’s special care of its young patients.
Conor, who celebrated his 11th birthday April 17, was in the Women & Children’s Neonatal Intensive Care Unit for 2½ months. While he’s had close to a dozen surgeries, including three prolonged “mandibular distractions” to stretch his jaw, he’s thriving. As a fifth-grader at West Seneca West Elementary School, he gets mostly A’s in school, loves to read, enjoys Boy Scouts and has run four 5K races in fairly impressive times for a kid his age.
He still faces challenges, though, in speaking more clearly, using his thumbs, having to eat smaller portions and using a feeding tube two or three times a day.
The prognosis for Conor wasn’t quite so rosy in his first few months.
Doctors told the family that he’d probably have a tracheotomy tube until his teen years. That’s tough for a child, putting limitations on swimming, going to the beach, even taking a bath. But when Conor was 4, Dr. Mark Nagy, a pediatric otolaryngologist, removed that tube, allowing Conor to have more extensive speech therapy, to sleep through the night and to eliminate the need for overnight in-home nursing care.
“That was a game changer,” his father said.
Still, the family had to go down to New York University Medical Center several times a year for specialized treatment not available in Buffalo. That put a huge strain on the Vanderlips; Colleen is a pre-K teacher in West Seneca, Vincent is the Springville-Griffith Institute high school principal, and Conor has three siblings: Madison, 14; his twin, Grace; and Ryan, 9.
“It was financially and emotionally stressful,” Vincent Vanderlip said of those often last-minute visits to New York City. “It was borderline exhausting.”
When Conor’s NYU physician retired, the family started going to Strong Memorial Hospital in Rochester, until his doctor there moved to the Midwest.
Then last June, Women & Children’s appointed Chou and Deitrick to their positions.
“That took a lot of stress from our family,” Colleen Vanderlip said.
“While NYU had these fantastic doctors, the facilities at Children’s are far more modern,” Vincent Vanderlip added. “That’s created a peace of mind that when a minor complication occurred, we didn’t have to go to New York, set up transportation, pull Conor from school and be taken away from our work and our three other children.”
The Vanderlips call Women & Children’s the “Garden of Eden” of hospitals, from the facility’s attentive and caring nurses to the top-flight professionalism of its physicians. Among many, they singled out Jan Rockwood, from the hospital’s Craniofacial Center; Chou and Deitrick; the late Brodsky, who died last year; Nagy; Dr. Paul Creighton, from University Pediatric Dentistry; and geneticist Dr. Luther Robinson.
“We’re fully confident in their professionalism and their amazing ability to treat what everyone agrees is a very complex case,” Vincent Vanderlip said.
One example came when Colleen Vanderlip became pregnant with the couple’s youngest child, Ryan. Concerned about the possibility that he might be at risk for Nager syndrome, the couple met with Robinson.
“Are you a faithful man?” the geneticist asked Vincent Vanderlip.
“I said I was,” Vanderlip replied.
“Will you pray with me?”
“Yes, I will.”
Vanderlip, proudly hugging Ryan on the couch in the family’s West Seneca home, explained what that moment with Robinson meant to him.
“He put my mind at ease, and we were blessed with this little red-headed one.”