‘Small, But Mighty’
Danielle Allen's pregnancy and delivery was by the book, with no major surprises or challenges. But just six hours after the birth of her daughter, Vivienne, at Copley Hospital on June 25, 2021, everything changed. Danielle's husband, Nick, noticed Vivienne turning a frightening shade of gray.
Vivienne’s oxygen levels were alarmingly low, so her caregivers at the small, community hospital knew immediately she needed more acute care and arranged her transfer to The University of Vermont Medical Center. Just a few hours later, Vivienne was tucked inside the neonatal intensive care unit at the UVM Children’s Hospital in Burlington.
“When we got to the NICU that night, the doctors told us that this sometimes happens with babies ... and their lungs sometimes need time,” Danielle says. “Of course, we were scared, but reassured that they seemed confident that she'd be OK and we'd be going home in a week or so.”
But weening Vivienne off of breathing assistance was taking longer than anticipated, and the newborn was still having episodes of troubled breathing. “All these alarms go off. It's sort of traumatizing,” Danielle says.
A NICU nurse caring for Vivienne helped advocate for additional tests – and it soon became clear to Danielle and Nick that the road ahead for their baby would be extremely arduous.
Vivienne was a large baby, weighing in at just over 9 pounds. Allen said her daughter’s head was also large, but Nick, who stands at 6-feet, 6-inches tall, also has a large head. It seemed to make sense that Vivienne would be a large baby. "We were just like, ‘Oh, dad has a big head so Vivi has a big head,’" Danielle says.
Unfortunately, a cranial ultrasound and an EEG to detect seizure activity, performed at the urging of a NICU nurse, revealed it wasn’t just genetics at play. There were no signs of seizures, but the ultrasound revealed a mass in the right hemisphere of Vivienne’s brain. A MRI confirmed the devastating diagnosis – it was a tumor.
“It was hard meeting Danielle and Nick when Vivi was only a few days old, and to have to explain that the mass in Vivienne’s brain was most likely cancer and, given the appearance, it was high grade,” says Caroline Hesko, MD, a pediatric oncologist at the UVM Children’s Hospital. “As hard as it was to be the one to share that news, it doesn’t compare to how hard it was to be the ones receiving that news.”
Less than 24 hours later, Katrina Ducis, MD, a pediatric neurosurgeon at the UVM Children’s Hospital explained the course of treatment to the Allens as gently as possible: brain surgery followed by 72 weeks of chemotherapy, all of it risky and dangerous for a newborn.
"To hear the words ‘brain cancer’ is unbelievably traumatic for anybody,” says Danielle. “For it to happen to our infant, we were just in complete shock. There was not a lot of time to process, so we just put our complete trust in her care team.”
Two weeks later, Dr. Ducis performed surgery, hoping to be able to remove 50% of the tumor.
“Her surgery was so successful that imaging showed Dr. Ducis removed most, if not all, of it,” Danielle says.
Samples of the tumor were sent to New York University for testing, while Vivienne spent another week in the NICU recovering. Finally, she was allowed to go home—temporarily.
When the test results came back weeks later, Dr. Hesko explained that the tumor was an infant-type high-grade hemispheric glioma – a rare and typically fatal tumor. She and the care team urged the Allen family to seek a second opinion on the course of treatment from Boston Children’s Hospital, which confirmed the diagnosis and treatment plan. But the Boston doctors then did something that surprised the family: they recommended that the Allens continue treatment at UVM Children’s Hospital.
“We were so relieved because we did not want to uproot our lives and move down to Boston,” says Danielle. “We would have if we had to, but to hear that UVM could handle it was reassuring because we had a really positive experience with the NICU.”
Vivienne began her chemotherapy at 8 weeks old. Dr. Hesko, who treats extremely sick children regularly, still marvels at the little girl’s toughness and tenacity.
“Resilient doesn’t seem adequate to describe Vivi or her parents,” says Dr. Hesko. “I have seen Vivi though two brain surgeries, three central lines placements, 18 cycles of chemotherapy and an array of side effects due to her therapy. I have also seen her devour a quart of strawberries while getting chemotherapy, learn to sit and scoot around, to babble and then talk. It was exciting to see Vivi ring her end-of-treatment bell to mark the end of one journey and the start of the next.”
Vivienne finished her treatment earlier this year, on January 3rd – at 18 months old.
“We rang in the New Year at the hospital, but it was a welcome celebration,” Danielle says. “We're just so grateful for the care that she had, the incredible – and it really was a whole village at the hospital – care that she received.”
A recent scan offered more good news for Vivienne and her parents – no signs of disease.
“Just to see her thriving right now is any parent's biggest hope and dream. She's doing really well,” Danielle says. "We can't emphasize enough just how grateful we are. To me, the perfect way to describe the UVM Children's Hospital is ‘small, but mighty.’”
