At 4:26 PM on the Friday after Thanksgiving 2020, Anne Hatfield-Hawton got the call from Dartmouth Health’s Southern Vermont Medical Center (SVMC), where she’d been receiving obstetrics care. The ultrasound looked “off,” the voice over the phone said.
“There’s no way,” Anne told herself. “They probably didn’t read the report properly.” But on December 7, a scan at Dartmouth Health’s Dartmouth Hitchcock Medical Center (DHMC) confirmed her baby had a cleft lip, among other abnormalities.
At eight and a half months pregnant, Anne hardly had any time to process the news. “It felt like a train hit me. We’d just moved from Los Angeles to Vermont, had a two-year-old at home, and were in the middle of a massive renovation of an old farmhouse while working demanding corporate jobs. There were just a lot of moving parts.”
Terrified, her thoughts spiraled. Had she caused this? Would her son get bullied? What kind of life would he have? Why, after having a healthy first child, Milly, should her second child face these challenges?
“I was scared to death about my baby. Scared to death about my body—was it meant to carry this baby? I was scared about what kind of life he was going to live,” she says now. “I was questioning everything about myself.”
The Surgeon in Harry Potter Glasses
Two weeks before their son Ernie entered the world, Anne and her husband Johnny began seeing Joseph Shin, MD, a pediatric surgeon at the Dartmouth Health Children’s Face of a Child Craniofacial Clinic and a professor of surgery at the Geisel School of Medicine at Dartmouth.
Just mentioning his name, Anne breaks down in tears.
In a bow tie, tweed jacket, and Harry Potter glasses, Dr. Shin reassured the Hatfield-Hawtons. Once we repair the lip, he said, the palate will start to come together. “This is a body that wants to function.”
On December 22, 2020, Anne went into labor. At one point during her 24-hour labor, Ernie got stuck and a vacuum was used to extract him. Nearly 10 medical professionals packed the room when he finally emerged.
“The first thing we heard was a scream, which was the best feeling in the world,” Anne says, tears streaming down her face even now, five years later. “The moment Ernie took his first breath of air, he told us not to worry.”
Cleft lip, cleft palate, 12 toes, and a small growth on his pinky she called his “jingle bell.” But Dr. Shin worked his magic. He removed the “jingle bell” before they left the hospital. Ernie went home with ten fingers and 12 toes. All the other details, Dr. Shin consoled, would get sorted in due time.
I Have a Team
In navigating Ernie’s complex health needs, Anne had called hospitals in both Boston and New York to see what type of care they could provide. All gave her lists of departments to call, appointments to manage separately. “But I’m ADD and carry a high-load life,” Anne says. “I don’t have the capacity.”
That’s when she discovered what made the Face of a Child program different: Rather than coordinating specialists across various departments, the program brings together a multidisciplinary team. Plastic surgery, genetics, neurosurgery, ENT, and speech pathology all work together in harmonized clinic visits. For families dealing with complex craniofacial conditions, this means one point of contact instead of dozens of separate responsibilities.
Shelly Calley, the program coordinator, became what Anne calls “the EA slash guardian angel of Ernie’s care journey.” She managed all the appointments, answered questions, and became Anne’s lifeline. “We talked every other day for two years,” Anne says. “I wouldn’t have gotten through this without Shelly.”
The Phenomenal Snowman
Initially, Anne bristled at the idea of genetic testing. But when she saw other babies hitting milestones Ernie wasn’t, she knew they needed answers.
DHMC’s genetics team—Mary Beth Dinulos, MD, and Stephanie Vallee, MS, LGC—guided them through the decision. “Nothing you did caused this,” the genetic counselors encouraged. “When we know the facts, we can problem-solve.”
The test revealed Ernie had Gorlin Syndrome, a rare genetic disorder that involves a missing tumor-suppressant gene which heightens risks for brain tumors and skin cancers.
Early detection meant early protection. For three years, Ernie received MRIs every six months. And today, he is “drenched” in sunscreen 24/7. “He looks like a snowman,” Anne laughs.
Protection came in other ways, too. Speech pathologist Heather McCoy, MS CCC-SLP, coached Anne through the challenge of feeding a baby with no suction. With two kids similar in age to Anne’s, Heather shared her own struggles, normalizing what felt impossible.
“She made me feel safe as a mother,” Anne says, heartened to know that these daily feeding routines would build fundamentals that would impact Ernie’s speech development years later.
Don’t Know What You’ve Got (Till It’s Gone)
Before Ernie’s first cleft surgery at three months, Dr. Shin told Anne and Johnny something unexpected: “This thing you’re so scared of? You’re going to become really attached to it.”
The couple doubted it at first, then found themselves scheduling a family photo shoot pre-surgery. “This thing we wanted not to be there, we actually mourned when it was gone,” Anne says. “It was how we first knew him. It was part of his story—part of our story.”
Looking at the “after” photos, you can barely see the scars.
The Hatfield-Hawtons stayed in Vermont for five years of care before moving to Austin, T.X., in 2024. They’ve connected with Texas Children’s Hospital, but Anne has told Dr. Shin that when Ernie’s next surgeries come up, even if he’s retired, she’ll be knocking on his door.
Your Everyday Chatterbox
Now, Anne says, Ernie is a “chatterbox,” and currently works with speech therapists, physical therapists, and occupational therapists. His seven-year-old sister, Milly, is his champion, translating when others can’t quite understand him. Happy, clever, surrounded by friends at his new school in Austin, Ernie recently ran a whole mile at a fun run—something that would have seemed impossible in those early years when he struggled with gross motor skills. Beyond all that, he carries what Anne calls an old soul. Wisdom beyond his years.
“The word ‘special’ used to make me uncomfortable,” Anne reflects. “But now I think, he really is special. One in 10 million.”
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