For nearly a year, the hospital was the only home Bennett Berner knew.

A premature birth via an emergency caesarian 10 weeks early, two open heart surgeries and other medical procedures for a complex congenital heart disease kept him at University of Michigan Health C.S. Mott Children’s Hospital for 340 days.

It’s where he had his first Halloween, wearing a burrito costume inside his hospital crib decked out as a taco stand labeled “Bennett’s Burritos.” And where he became known for creative photo shoots like dressing as an old man after turning 100 days old.

An elf named Archie even visited him during the holiday season in 2022, once wearing scrubs, a hairnet and surgical booties to follow him into the operating room. 

The family wanted to make special memories here, his mom Kaylee Berner says, because “we didn’t know if there’d be any outside the hospital.”

But this year will be different. This year, 18-month Bennett will celebrate his first Christmas at home.

“We’re doing all the Christmas things. We put the tree up right away. There will be sugar cookies and Christmas music and time with all our family,” his mom said.

Bennett was born with a single ventricle heart disease called tricuspid atresia with D-transposition of the great arteries. He later developed pulmonary vein stenosis – a narrowing of the blood vessels that return blood to the heart from the lungs.

Because of his prematurity, born at just three pounds, 10 ounces, and chronic lung disease, his case was particularly complex to treat.

“He was trying to breathe and live with half a lung and an abnormal heart,” Kaylee Berner said.

Bennett spent long months in the Newborn Intensive Care unit, overseen by several influential doctors who helped navigate medical challenges tied to his prematurity, nutrition and breathing, including Mott neonatal-perinatal physician Rebecca Vartanian, M.D. 

And in January 2023, he became one of the first patients to be enrolled in a new pulmonary vein stenosis program at Mott, which started at U-M’s Congenital Heart Center thanks to donors Russell and Heather West. The Wests created the fund in memory of their daughter, Adalyn.  

The treatment means regular interventions at Mott every six to eight weeks for stenting and balloon angioplasty, which involves transcatheter widening of Bennett’s narrowed blood vessels using balloon catheters. Despite balloon dilation and stenting, pulmonary vein stenosis is a progressive disease that recurs even after aggressive catheter based treatments and chemotherapy. 

“This is a life limiting disease that requires high risk complex procedures and intense ongoing support,” said the head of the pulmonary vein stenosis program Jonathon Hagel, M.D., a Mott pediatric cardiologist who treated Bennett.

“This is a life-limiting disease that requires high risk complex procedures and intense ongoing support.” Jonathon Hagel, M.D. 

“Options for Bennett were limited. But seeing the family now get to experience things with him, like having a summer together, birthday parties, going to the beach and having Christmas at home – this is why we do what we do.”

A critical heart diagnosis

In 2022, Kaylee and Kyle Berner learned during a 20-week ultrasound that there were multiple medical problems with their unborn baby boy. They were told outcomes ranged from stillbirth to terminal diagnoses.

The Lapeer area couple was referred to U-M Health where Kaylee Berner eventually was hospitalized prenatally to await labor and delivery – not knowing it’d be nearly a year until they brought their baby home.

The Berners wanted to document every milestone during their hospital stay, creating elaborate photo shoots and celebrations whenever possible. 

“We didn’t know how long we’d have with him, and I didn’t want all our memories to be harsh ones. We have plenty of those but also some awesome and fun moments too,” Kaylee Berner said.

“We had such a strong community at U-M, and the nurses and primary team became part of our family. As much as I love being home, I almost miss it there. We owe so much to Dr. Hagel and the people who took care of Bennett.”

Because Bennett was heavily sedated on actual Christmas Day 2022 following recovery from his second heart surgery, his family kept a mini tree up in his hospital room into the New Year. They waited until February to mark the holiday with matching reindeer pajamas and treats, joined by their care team.

“Feb.4 will always hold a special place in my heart as our belated little Christmas because that’s when we got to celebrate with Bennett awake,” Kaylee Berner said.

Making memories at home

On May 31, 2023 Bennett was discharged, finally going home to the puppy themed nursery waiting for him and getting to meet two furry family members at home: weiner dogs Daphney and Darryl. 

A month later, the family hosted Bennett’s first birthday party, with a pizzeria theme “have a slice of fun, Bennett is one,” inspired by the couple’s special pizza dates before marriage. They were joined by not only blood relatives but care providers and other patient families they met at the hospital. 

The family enjoyed the rest of the summer with several outings, even getting to dip Bennett’s feet into Lake Michigan for the first time.

Today, Bennett requires a tracheotomy tube attached to a ventilator to breathe, along with a feeding tube, and his medical journey remains challenging with more procedures ahead. But his family is soaking up all the experiences together, Kaylee Berner says.

“He’s behind because of what he went through but he’s learning more every day, like sitting up and rolling over. Watching him grow, interact with cousins, seeing his personality come out, this was always what we wanted for him,” she said. 

“We don’t know how many birthdays and holidays we will get with him. We are grateful for every moment.” 

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