A Pediatric Intensive Care Unit team worked hard to fulfill the final wish of a young girl's family — saying goodbye to their daughter among the trees. Even through their grief, the family is grateful to the team for caring for all of them.

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On a Saturday evening last September, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special. 

"I distinctly remember meeting her parents — you just immediately felt warmth and love," says Brenda Schiltz, M.D., a consultant in the Pediatric Intensive Care Unit (PICU). "I could so clearly understand who Mae was through them."

At 11, Mae was both an old soul and a spirited child. "She was a petite thing with huge energy," says her mom, Julie Helgeson. "She was a deeply feeling person."

Mae thrived on being outside, photographing birds on her family's property, her favorite field guide in tow. Mae loved to draw. She was learning to play the ukulele. Her passions began to bloom once the family started homeschooling, allowing Mae to learn in her ideal environment — among the trees.

It was obvious to everyone who met the family that they were tight-knit.

"You could tell they knew that girl in and out," says Claire Shea, a nurse who cared for Mae early in her stay.

From the beginning, the team focused on incorporating all the things that mattered to Mae. While this is the goal for every patient, the family's well-defined sense of their daughter enabled the PICU staff to honor her in special ways.

"I often ask parents to tell me about their child. 'Is there anything you think is important or that I should know about your family?'" says Paige Dighton, one of the Child Life specialists who partnered with Mae's family. "This allows them to share the special things — those unique qualities that make them a family. You learn more than just what's in their chart."

What her parents shared influenced everything from the small details — like the hand-colored paper birds the nurses hung in her room — to the most impactful moments — like how Mae would spend her final hours. 

"They held Mae's hopes and dreams alongside the decisions they were making," says Dighton.

Those decisions were the hardest ones her parents had ever faced.

A musical pause

Several days after her arrival, caring for Mae meant providing a moment of reprieve through music.

When her dad, Matt, stopped Maureen Howell in the hallway of the PICU, it was to share how much his daughter loved music and to invite her to visit Mae. As a music therapist on the Child Life team — usually with a guitar or guitalele strung across her back — Howell was eager to offer whatever support they wanted.    

The hours she spent in that hospital room would prove to be deeply memorable.

"Before my visit, they had gotten some difficult news from Neurology," recalls Howell, who shared parts of Mae's story at a recent Nursing Forum. "There was a weight — a heaviness — in the room."

We're not just treating and healing physical needs. We're also treating and healing the emotional needs of families.

Jennifer Rodemeyer

Part of Howell's role is to adapt her offerings, which range from therapeutic songwriting to guided imagery for pain relief, to meet the needs of the patient. That meant getting to know Mae and her family first.

"We're not just treating and healing physical needs," says Jennifer Rodemeyer, manager of the Child Life program in Rochester. "We're also treating and healing the emotional needs of families," making care like Howell's so important.

Family photos and Mae's brothers' artwork decorated the hospital room, giving Howell an immediate sense of their connectedness. A few days earlier, Shea — one of the nurses who'd been there the first night — had decorated Mae's orthopedic boots with a Sharpie pen to highlight Mae's favorite things, from art to trees to tacos, while the nurses' vibrant paper birds had transformed the room into a nature scene.  

"We don't just think about the medical things going on in a patient's room," says Shea. "There's a lot of power in seeing them as a person, hearing the stories and bringing that in."

Beyond creating a comfortable space for the family, this can help new members of the care team, like Howell, know how to connect.

As she talked with Mae's parents, they shared videos of their daughter playing the ukulele, welcoming Howell into their world. When she asked if she could sing for them, others in the room quietly departed.

It almost felt like time stood still as she strummed song after song, giving Mae's parents the opportunity to simply hold their girl and grieve.

"They were just lying in bed with her — singing along with me at times, crying, just kind of blocking out everything else that was happening," Howell says. "They just took that time to be together."

From "Over the Rainbow" to "Yellow" by Coldplay, Howell adapted her playlist — and in some cases, the song's lyrics — to offer as soothing an experience as possible for Mae's parents.

At a couple of points, Julie noticed Matt glancing at her, silently asking if she needed a break.

"I was like, 'No, stay,'" says Julie. She didn't want Howell's music — or their moment with Mae — to end. "Maureen created a remarkable, sacred space."

A devastating decision

It was only a couple of days later that Mae's family was faced with the devastating decision they'd hoped to avoid. As the severity of Mae's brain injury became apparent, they realized their daughter wouldn't be coming home. The question shifted from "Can we save her?" to "How do we say goodbye?"

Following their lead, the team began focusing on end-of-life care.

"Dr. Schiltz gave us the space to think and process our emotions — it didn't feel rushed," says Matt. "I think she would have sat there all day with us. There were some pretty long, quiet times with her next to us, which was what we needed."

From the beginning, Julie and Matt had been clear that a meaningful life for Mae would include photographing her beloved birds and enjoying nature.

Watch a slideshow of Mae's creations:

"Life in that way for Mae was really not negotiable," Julie says. "They supported us following our instincts. To stay true to who we believe Mae is and what she would want."

"Sometimes, we just need to give the families 'permission' to know what's best," says Dighton.

The team also sat down with the extended family to explain Mae's condition, which wasn't always obvious, since she still looked like Mae — a beautiful sprite of a girl with sun-kissed hair.   

"We wanted to make sure that everybody walked away from this awful, tragic situation feeling as at peace as possible," says Dr. Schiltz.

With the guidance of the Child Life team, the parents took their boys — Henrik, 9, and Oscar, 7 — to a nearby park to prepare them, but also to seek their perspective, which they considered as valuable as their own. "I asked them, 'What would feel like a good life for Mae?'" says Julie.

Even as young kids, they knew what their parents did — that a life for Mae was a life spent outdoors. Freedom for Mae meant engaging intimately with the natural world.  

Before heading to the hospital, Henrik and Oscar chose a leaf to give to their sister, which they planned to add to the growing collection of bird feathers clutched tight in her hands.

Back in Mae's room, the boys ate Chick-Fil-A — a typical Tuesday offering in the PICU — and peered quietly at the medical equipment, soaking it all in. They showed Dighton the leaf they'd found. Too nervous to place it in Mae's hand, they asked their dad to do it — their own quiet goodbye.   

"This family handled everything with such compassion and tenderness," says Dighton. "They were the epitome of creating something beautiful and impactful," even while facing the outcome no family wants.

A beautiful goodbye

With the support of the care team, Julie and Matt carried that beauty into Mae's final day.

"When they were ready to take her off life support, they wanted to do it outside," says Dr. Schiltz.

Several days before, the team had brought Mae into a courtyard near the PICU, giving her the fresh air she loved so much. Now, the family wanted to venture farther out to a quiet, grassy knoll on Mayo's grounds.

"We found these big, majestic trees — not just one kind, but like four different species," says Matt.

He and Julie appreciated the nod to Mae's love of natural diversity.

Dr. Schiltz, Katie Schiltz, a nurse, and Nanette Matzke, a respiratory therapist, were determined to give them this gift. Together, the trio created a plan to transport Mae, along with her ventilator and other medical items they would need to keep her comfortable.

"This is what we do for our kids and families," says Dr. Schiltz. "We will do everything humanly possible to give every child the best possible care. And that care doesn't end because we can't save them."

As the little group wheeled Mae outside, others in the unit came together to show their love and support. "We turned the corner, and every single nurse was lining the hallway," remembers Julie. "I just dropped to the floor. That moment was as challenging as it was beautiful."

After taking Mae to the family's chosen spot, Matt laid his little girl on a blanket spread across their laps under the trees. The team extubated her, and as the ventilator quieted, chickadees and nuthatches flittered nearby. A brave squirrel ventured close to the blanket.

"Nature showed up right when we needed it," says Matt. "We couldn't have hoped for anything else in that moment."

In the stillness of the day, "her parents just held her," recalls Dr. Schiltz. "They spent a couple of hours outside, with the birds and the sunshine coming through the trees. It was as beautiful a situation as you could ever want."

Later the next day, on Sept. 9, 2024, Mae passed away in her room at the Saint Marys Campus with her parents by her side.

Remembering Mae

During her time in Mae's room, Howell had watched Julie and Matt listen to their daughter’s heartbeat with a nurse's stethoscope. She'd asked them if they wanted to record the sound.

Their "yes" enabled Howell to care for them in one final way.

When invited to sing at Mae's funeral, Howell suggested a more lasting way to honor her legacy — recording a song with Mae's heartbeat thrumming in the background. The family played the song at the service, an audible reminder illuminating their daughter's boundless, beautiful energy.

The care team has found their own ways of remembering Mae, who left a mark on all their hearts.

"It was so clear that Mae and her family touched so many people and that so many people were able to support them," says Howell. "This was one of the most beautiful examples of that in my time at Mayo."

Many of the staff still cry when they talk about her. When teaching trainees, Dr. Schiltz makes a point to bring up Mae, encouraging them to care for patients the way the PICU team cared for her.

"None of this was because any one individual did something. It was because we had an entire team focused on helping this family," she says. "It was about giving them everything we could in such a tragic situation."

For Julie and Matt, that care was apparent in the tender way the nurses cleaned Mae's hair. The shared sadness they saw in others' eyes. The willingness to do whatever it took to give them their goodbye.

"We were all praying for a miracle at the end of this," says Matt. "It was the miracle we didn't get, but the care we received was remarkable. It was just as much about what we wanted for her as what we needed for us. There was care for all of us."