Evenings in the Staal household often carried a delicate unpredictability. After a full school day — and as Ethan's medication began to wear off — the shift from playful to overwhelmed could happen in seconds. Ethan has attention-deficit/hyperactivity disorder (ADHD), a condition that can make emotional regulation especially challenging.  

Ethan's feelings sometimes escalated faster than he could manage. In those difficult moments, his parents say, he became "not accessible" — often needing close to an hour before they could help guide him back to calm. 

Their search for specialized care led them to Mayo Clinic, where child and adolescent psychiatrist Magdalena Romanowicz, M.D., introduced the family to Parent-Child Interaction Therapy. She also invited them to participate in a first-of-its-kind study powered by a smartwatch and artificial intelligence (AI). 

The smartwatch technology was designed to help anticipate when a child was nearing emotional overload, giving parents a chance to step in and defuse the situation before it escalated. For the Staals, the technology offered a clear sense of what was happening inside Ethan just early enough to help him through it. 

"It was a game-changer," Jared Staal says. "We still have challenges, but now we see them coming and we see them through a whole different lens — we didn't always know how to support him in those moments, and now we do." 

A window into the moments before escalation

During the four-month study, Ethan wore a smartwatch that tracked his heart rate, movement and sleep. When the system detected patterns that suggested his stress was building, it sent an alert to Sarah or Jared's phone. 

"It gave us a warning that something was coming," Sarah says. Instead of reacting at the peak of Ethan's distress, they could intervene earlier with calm reassurance, redirection and other techniques they learned in their 12 Parent-Child Interaction Therapy sessions. 

"We could help him recover in 5 to 10 minutes," she says. "And we could have our evenings again as a family." 

What the study revealed 

The Staals' experience reflects the study's overall findings. In the clinical trial, smartwatch alerts prompted parents to respond within four seconds on average to early signs of escalating stress. Their children's severe tantrums were shortened by about 11 minutes — roughly half the duration seen with standard therapy alone. 

The broader context underscores the need for new approaches. Nearly 1 in 5 U.S. children lives with a mental, behavioral or emotional health disorder, yet the number of pediatric mental health specialists has not kept pace with demand. Smartwatch technology represents one possible way to extend support into the home by helping families recognize early changes in a child's stress levels. 

Across a shared wall 

The technology behind the alerts emerged from an unexpected spark. 

Electrical and computer engineer Arjun Athreya, Ph.D., worked just steps from the Children's Hospital Psychiatry Unit at Mayo Clinic — a single shared wall separating his world of algorithms and data from the clinical rooms where children and their families experienced some of their hardest moments.  

Passing conversations with the psychiatrists next door became more formal collaborations as the team began to ask: What happens inside a child's body in the minutes before an outburst? And could those invisible shifts be measured? 

With support from Julia Shekunov, M.D., Medical Director of the inpatient unit, and help from the nursing staff, the team launched a small pilot to explore those questions. 
 
From that work, Dr. Athreya and his team developed an AI model designed to recognize the earliest physiological changes that precede escalating behavior. That work became the foundation for the smartwatch system now being explored with families. 

A family's early role in the research 

One of the first families to try out the smartwatch system was Sawra and Matthew Maurer and their son, Theo.  

For the Maurers, the challenges with Theo were mounting. Calls from kindergarten had become a near-weekly routine: "Theo is having a hard time. Could you come get him?" Around that same time, Theo was diagnosed with ADHD, which helped explain the emotional dysregulation and sudden behavioral shifts they were seeing.  

Theo could slide from being engaged in an activity to overwhelmed in an instant — sweeping crayons off tables or having severe tantrums that sometimes required teachers to guide classmates out of the room. "It was a very difficult year," Sawra recalls. 

Enrolling in the early smartwatch feasibility study gave her new insight.  

During the study, Theo wore a watch each day that collected his physiological data — heart rate, movement, sleep patterns — while the family logged episodes in an AI-powered app. 

That data helped researchers understand what Theo's body was doing in the moments before he became dysregulated. By matching those physiological signals with what was happening behaviorally, the team could begin identifying the subtle shifts that happen as a child moves from calm toward distress and then back to calm. 

Theo's data helped teach the system what those early changes look like in real-world settings. 

Sawra didn't receive alerts in that early phase, but she could see the information the watch recorded. "The idea is wonderful," she says. "Being able to detect when a child is heading toward a severe tantrum would be a phenomenal thing for a parent." 

Moving the research forward

Future studies will focus on improving the model, testing the system in larger groups and examining how real-time physiological data can inform care outside the clinic. As that work continues, the experiences of families like the Staals and the Maurers will help guide how the technology evolves and how it can support children in everyday life. 

Related article

Mayo Clinic smartwatch system helps parents shorten, defuse children’s severe tantrums early

Mayo Clinic researchers have developed a smartwatch-based alert system that signals parents at the earliest signs of a tantrum in children with emotional and behavioral disorders — prompting them to intervene before it intensifies. Read more.

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Over two years ago, a devastating hip condition and a misdiagnosis threatened to sideline a young high school basketball player for good. But thanks to advanced medical expertise and innovation at Mayo Clinic, the 16-year-old prep star in North Carolina is back in the game — stronger, more determined and inspiring others with his comeback story.

Jason Howland has his story.

Watch: Mayo Clinic restores hoop dreams for teen athlete

Journalists: Broadcast-quality video (2:44) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Watch him on the court, and it’s clear that 16-year-old Roman Solheim loves playing basketball.

"I love the competitive nature, just competing and having fun with my guys," he says.

A 6-6 high school sophomore in Greensboro, North Carolina, Roman has high hopes for the future. "I want to go to a D1 school, preferably a high major, and become an engineer," he says.

But three years ago, those hoop dreams were nearly deflated by a subtle hitch in his step.

"We couldn't figure out anything because he, being Roman, didn't say too much. He didn't really complain about it," says Kristie Solheim, Roman's mother.

"I was just limping, not moving the same way that I usually do," Roman says.

"He went through some therapy, and he started playing again, but his limping was more pronounced at that point. And then it started to be painful," says Brent Solheim, Roman's father.

Roman's doctors diagnosed him with avascular necrosis, a lack of blood supply to the bone. "There's not a good treatment for it. He has to stop playing all sports to preserve his hip as long as possible, and he's looking at a hip replacement in 10 years," Brent says.

"It's crazy. It just wrecked my world, basically," Roman says.

"We said, 'We're going to get a second opinion at Mayo.' And that's what we did," Brent says.

A multidisciplinary team of experts at Mayo Clinic in Rochester, Minnesota, quickly determined the true cause of Roman's limp and hip pain.

"They said I had chondroblastoma, which is a benign bone tumor on my femoral head," Roman says.

"The tumor was inside his femoral head, the ball in the socket joint. It is a rare tumor, but especially for younger patients with open growth plates, it's something that we see commonly here," says Dr. Emmanouil Grigoriou, a Mayo Clinic hip preservation surgeon.

Dr. Grigoriou performed the surgery to remove Roman's tumor. "We were able to surgically and safely dislocate the hip so we can actually take the ball out of the socket, so we can see exactly the tumor, remove it in its entirety, and then put in extra bone — just to let it and help it heal — and then put everything back in place," he says.

A key component of surgical planning and the procedure itself was a 3D-printed replica of Roman's ball-and-socket joint created by the Anatomic Modeling Unit at Mayo Clinic.

"The green is Roman's tumor, and this is a model of his very specific hip with his very specific tumor," says Dr. Grigoriou as he displays the replica of Roman's femoral head.

Two years after the tumor was removed, Roman is back on the court and better than ever. "I can jump a lot higher now," Roman says.

"It was amazing to see him back on the court after, you know, being told he couldn't play again," Brent says.

"We're very proud. He's been through a lot. He's very brave," Kristie says.

"Anything is possible. I came from being told I would never play again to playing at a very high level," Roman says. "You can do way more than what you think."

The post (VIDEO) Mayo Clinic restores hoop dreams for teen athlete appeared first on Mayo Clinic News Network.

On a Saturday evening in September of 2024, 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 Dr. Brenda Schiltz, a physician in Rochester's pediatric intensive care unit (PICU). "I could so clearly understand who Mae was through them."

At age 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 unique 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 have 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, he shared how much his daughter loved music and invited her to visit. 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, "There was a weight — a heaviness — in the room."

Part of her 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," explains 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 Sharpie to highlight her 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 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.

"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 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," 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 Saint Marys 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."

The post Honoring a young girl’s love of nature on her final day appeared first on Mayo Clinic News Network.

Watch: Braxton Wohlferd's story

Journalists: Broadcast-quality video (3:19) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Wetting a line and catching fish is just one of the many passions of young teen Braxton Wohlferd.

"Whatever they like to bite is what I like to throw," Braxton says. "I just like the aspect of being outdoors and just hanging out with people and having fun."

But earlier this year, this healthy, athletic high schooler from St. Charles, Minnesota, had his world turned upside down in a flash.

"He called frantically," says Melissa Wohlferd, Braxton's mother.

It was the morning after his 16^th birthday. Braxton thought he had the stomach flu. He was vomiting. Suddenly, it got much worse.

"I was like, 'You need to get home. Something's not right,'" Braxton says.

His mom, Melissa, a registered nurse, arrived moments later. "And he was lying on the floor, and his hands and feet were mottling," she says.

"My hands were turning, like, blue, almost. And then we tried to come upstairs, and I collapsed on the third stair," Braxton says.

"He said, 'Mom, I just can't do it. I can't catch my breath. My chest hurts,'" Melissa says.

Braxton was rushed to the Emergency Department at Mayo Clinic. Not long after he arrived, he went into cardiac arrest. Life-saving CPR was performed until Braxton was put on a life support machine.

"I believe it was 22 minutes, full chest compressions. His heart never beat again," Melissa says.

But why?

"Completely healthy and then, within a blink of an eye, he's hooked up to every machine possible, keeping him alive," Melissa says.

Doctors at Mayo soon solved the mystery — a common childhood illness called parvovirus B19, also known as fifth disease.

"The majority of people who get parvovirus may not even know that they've had it," says Dr. Rebecca Ameduri, medical director of the Pediatric Heart Failure and Heart Transplant Program at Mayo Clinic. "Most people, when they get parvovirus, will just have kind of common cold effects and will not have severe side effects like Braxton did."

Braxton's body had an extremely rare reaction to the virus causing his own immune system to attack and break down his heart muscle. "They said it was more likely to get struck by lightning," Melissa says.

"Sometimes, in cases like Braxton, it's what we call fulminant myocarditis, where it happens very rapidly, where those children can deteriorate in less than 24 hours," says Dr. Ameduri.

Braxton's only option was a heart transplant. "It was just so scary," Melissa says.

In less than a week, a miracle occurs. A donor heart arrives. "It was a perfect match for Braxton," Melissa says.

And a heart transplant performed by Mayo Clinic surgeons is a success. "It's kind of surreal to think that I'm still here," Braxton says.

"Without that organ donor, Braxton would not be here," Melissa says.

"Thank you doesn't even cover what I'd like to say. It's unbelievable. It's a selfless act that they give their organs away," Braxton says.

The virus also affected Braxton's legs, causing a condition known as compartment syndrome, which required emergency surgery to remove some of his leg muscles.

"I feel great. Feel like I'm getting my strength back, and I'm gonna keep working at it and plan on keep getting stronger," Braxton says.

Braxton hopes to be back playing baseball next year and planning plenty of future fishing trips.

"I don't know how many other people would have went through this and survived," Braxton says. "They said I was very lucky, I'm a miracle. And I feel like I'm a miracle."

Related stories:

• Mayo Clinic expert explains parvovirus B19, a common childhood infection
• Mayo Clinic Minute: What is myocarditis?

The post (Video) ‘In the blink of an eye,’ healthy teen needs new heart appeared first on Mayo Clinic News Network.

Evelyn Owens' brave battle with cancer is capturing the hearts of everyone around her.

At only 6 years old, Evelyn was diagnosed with rhabdomyosarcoma, a rare form of childhood cancer.

Evelyn's family traveled from their home in Oregon to Mayo Clinic Comprehensive Cancer Center in Arizona where doctors are using cutting-edge technology that's revolutionizing cancer treatment for many patients like her.

Fighting cancer is tough.

Evelyn proved she's tougher.

Watch: Cancer is tough. Evelyn Owens is tougher

Journalists: Broadcast-quality video pkg (2:11) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Fighting cancer with the spirit of a warrior and a smile

No matter what life throws at her, Evelyn's parents say she just keeps on smiling. "That's how she looks 99% of the time even if she doesn't feel good," says her mom, Claire Owens. Evelyn's dad agrees. "She's very, very tough," says Austin Owens.

Evelyn's toughness was put to the test when pathology results revealed she had cancer.

"Everybody thought it was a cyst," recalls Claire. "Even after surgery they said it was a cyst, and then the pathology came back as cancer."

What is rhabdomyosarcoma?

Additional tests showed the cancer was rhabdomyosarcoma. RMS begins as a growth of cells in soft tissue, like muscle. It can start anywhere in the body. RMS most often occurs in children younger than the age of ten. Symptoms depend on where the cancer starts and can include lumps under the skin, redness, swelling, and pain.

As part of her treatment, Evelyn's doctors recommended radiation with innovative cancer-fighting technology called proton beam therapy. Her family traveled from their home in Oregon to Mayo Clinic in Arizona so Evelyn could receive the cutting-edge therapy.

Fighting cancer with proton beam therapy

"Proton therapy allows us to treat the area we need to treat completely while protecting many of the normal tissues nearby," says radiation oncologist, Dr. Safia Ahmed. "And for pediatric patients that's very important because all of their tissues are growing."

Proton beam therapy attacks and destroys cancer cells with radiation by targeting the precise location in the body where the cancer is located. "And by minimizing radiation dose and radiation dose side effects to these tissues as they are growing is key. It improves their (patients) quality of life," says Dr. Ahmed.

Evelyn underwent 24 treatments of proton beam therapy over six weeks. Her parents say through it all, she stayed tough and positive.

"I can't imagine going through this with anybody else but you," says Austin about his daughter. "You should be the poster child for going through cancer and cancer treatments. I'm so proud of you and love you so much," he adds.

Evelyn is now 7 years old and back home in Oregon with her family. She will still require some chemotherapy treatment. Doctors say her prognosis looks good. Evelyn will undergo regular monitoring to make sure the cancer does not come back.

These days Evelyn is back to enjoying the things she loves most, like riding ponies with her brother, Henry, and taking her dog, Duke, on walks.

Evelyn's smile is bigger and brighter than ever.

The post Cancer is tough. Evelyn Owens is tougher appeared first on Mayo Clinic News Network.

Kelly and Jered Iverson of Grand Meadow, Minnesota, had planned a perfect Hawaiian vacation for themselves and their daughters, Isabelle (Izzy) and Emmy. In March, they enjoyed seven days on Maui, where they went whale watching, attended a luau, toured the Road to Hana and spent hours on the beach.

"Izzy is a great traveler," says Jered of his 11-year-old daughter, who was born with a developmental delay. "She likes to see all the sights and loves the beach."

Unexpected illness

After vacation, the family was looking forward to unpacking and sleeping in their own beds. This plan was interrupted, however, when Izzy started to feel sick during a layover at the Denver airport.  

"Izzy was really pale all of a sudden. I thought she didn't sleep on the airplane or eat much before, so maybe she was just tired or had low blood sugar," says Kelly.

Kelly and Jered gave Izzy a few snacks and had her rest. Soon, though, it became apparent that her discomfort was more than they initially suspected. Izzy told her parents that her back hurt and she became increasingly uncomfortable.

"It's hard for Izzy to articulate pain, like how it feels and exactly where," explains Kelly. "I could tell when the pain would hit her because she would shudder a bit. We knew it was real pain by the way she was wincing."

The family needed to make a decision. They could board their connecting flight to Minneapolis or remain in Denver and seek medical care. They decided to head home and gave Izzy an ibuprofen to try to make her more comfortable. The two-hour flight from Denver to Minneapolis was difficult.

"Soon she was crying and saying 'ow, ow, ow,'" says Jered. "We were thinking she might have appendicitis, be constipated or something like that."  

The couple and flight crew tried their best to keep Izzy comfortable and calm during the flight.

"It was awful. We were exhausted and feeling overloaded with anxiety," says Kelly. "Luckily, we had some very kind people sitting around us on the flight."

First stop: Emergency Department

Unfamiliar with the health care options in the Twin Cities, the couple decided to stop at the first Mayo Clinic location on their drive home from the airport: Mayo Clinic Health System in Cannon Falls.

An emergency nurse practitioner, David Steele, took the lead in unraveling the mystery of Izzy's pain and discomfort.

"When the family arrived, the child looked sick, yet I didn't feel it was related to constipation. She had some abdominal pain, so I was somewhat concerned about appendicitis. That was my initial approach," says David. "With all cases, it is important not to latch on to a diagnosis early and to keep your mind open to other things based on test results."

This was the perfect approach in Izzy's case. "Her blood tests showed her white blood count was elevated, and thus I was concerned for possible appendicitis and recommended a CT scan of Izzy's abdomen," says David.

The scan ruled out appendicitis but revealed a shocking surprise. Izzy had a significant mass near her left lung. Its presence was staggering, but so was its composition. While additional tests would be necessary, the care team believed Izzy's mass was a teratoma.

Teratomas are rare, germ-cell tumors, explains Michael Ishitani, M.D., a Mayo Clinic pediatric surgeon. 

"They are usually benign tumors and are formed during gestation," he says. "They consist of tissue from all different parts of the body. A classic teratoma will contain hair, skin, bone, and muscle and organ tissues."

David explained to the couple that Izzy would need to be transferred to Mayo Clinic in Rochester for a surgical evaluation.

"I felt bad for the family, as they just got off a long flight from Hawaii and they were ending their vacation at an emergency department," says David. "Izzy’s mother was such an advocate for her, which was helpful to all of us and easier for all involved."

Transfer to Mayo Clinic

While shaken, Jered and Kelly tried to remain optimistic for their daughter.

"We tried, but we were puddles — just a mess," says Kelly. "You want to remain strong for your children, but I remember sobbing in the hall."

Kelly's parents met them in Cannon Falls to provide comfort and support. They also took Emmy home so Jered and Kelly could focus on Izzy. She was transported to St. Marys Hospital by ambulance. Kelly rode along and Jered followed behind in the family's car.

The following day, Izzy had additional tests and another CT scan to confirm the location of the mass. Dr. Ishitani explained that he believed Izzy had a teratoma and would need surgery the next day to remove it. He also explained that most teratomas are benign but, rarely, they can be cancerous.

"The diagnosis of teratoma was highly likely, but we wouldn't know 100% for sure until it was removed and examined under the microscope," he says.

Kelly and Jered were relieved.

"It was just an enormous amount of comfort because we knew she could handle a surgical procedure," says Kelly.

Unique tumor

According to Dr. Ishitani, teratomas in the chest are exceedingly rare, and he had not seen one in his 30 years of practice before caring for Izzy. Most of the time, teratomas develop in the ovaries, testes or tailbone.

"The fact that this one is in the chest is unusual," he says. "This one was slightly attached to the pericardium sack in the middle of the chest, but most of it was sitting right in the center of the chest and pushing the lungs to the side. It was in the thoracic cavity adjacent to the lungs but not invading the lungs."

Surgery

Child life specialists kept Izzy busy with painting and other activities that afternoon and evening. The following day, Izzy was wheeled into an operating room and Dr. Ishitani performed the three-hour surgery to remove the fist-sized mass, which occupied about one-third of her chest. He confirmed it was a teratoma due to its composition.

Kelly and Jered got to see a photo of the teratoma after surgery, and the family nicknamed it "Izzy's Demogorgon" after a creature on the TV show "Stranger Things." Izzy remained in the hospital for two days after surgery. During this time, a pediatric ICU nurse, Marlee, made a lasting impression on Izzy.

"All of the staff was phenomenal. They came down to her level and made sure she was comfortable," says Kelly. "Now Izzy plays with this little doctor kit after school every day. She pretends to be Marlee and takes care of patients."

A few days after surgery, the pathology reports showed that Izzy's teratoma was benign and no additional care would be necessary. The family got more good news when Dr. Ishitani told them it shouldn't cause any lasting effects on Izzy's health.

"It's unlikely that it would affect her lung capacity going forward in the future," says Dr. Ishitani. "There's a mild compressive effect before surgery, but she should recover just fine."

And recover she did. Izzy returned to school about a week after her surgery, and her parents say that she's feeling fine.

"We are just overwhelmed with the staff and how they treated her, but also how they treated us. We were really scared at first, but they had so much compassion," says Kelly. "I was just so impressed with how the teams work together. It was a really easy transition from Cannon Falls to Rochester. Everybody knew what was going on when they came into the room. They were all so great with her and us."

This article originally appeared on the Mayo Clinic Health System blog.

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Caring for a newborn is full of twists and turns. Feelings of joy and contentment one moment can turn to fear and worry the next. That's how Nicole and Corbin Burkard of Eau Claire, Wisconsin, felt after their third daughter, Ellie, was born in February.

"She was just perfect and looked like her older sister," says Nicole. "She just fit right in."

The new family of five was settling into a routine at home when Nicole and Corbin noticed something wasn't quite right.

A mother's intuition

"She was a pro breastfeeder but now she wasn't eating. I also had a hard time keeping her awake," says Nicole, a Mayo Clinic Health System nurse. "She wasn't peeing at all either. I felt like something was wrong."

When Ellie began to vomit bright yellow liquid, the couple took their 5-day-old newborn to the Emergency Department at Mayo Clinic Health System in Eau Claire.

Ellie was examined by emergency medicine physician Robert Tillotson, D.O.  

"If there is a significant change in a baby's behaviors within the first weeks of life, it's important to be evaluated right away," says Dr. Tillotson. "Ellie's sudden symptoms of profound drowsiness, lack of urination and bilious vomiting indicated that she could have intestinal malrotation."

Intestinal malrotation is a condition in which the intestine doesn't develop or rotate correctly in utero. Some of the intestines can be in the wrong location at birth. For some infants, malrotation leads to a twist of the intestine that causes the blood supply to be cut off. This is called malrotation with volvulus and requires immediate surgery.

"Asymptomatic malrotation occurs in between 1 in 200 to 1 in 500 live births and symptomatic malrotation occurs in only 1 in 6,000 births," explains Mayo Clinic pediatric surgeon Denise Klinkner, M.D. "The bowel can recover if the blood supply is restored within six hours. If not diagnosed promptly, infants could lose a significant amount of intestine, leaving them with complications like short gut, total parenteral nutrition dependency or possibly intestinal transplant. Prompt recognition and treatment are life-changing."

Headed to surgery

The Eau Claire team explained to the Burkards that Ellie would require emergency surgery at Mayo Clinic. The weather that evening grounded the medical helicopter, so Ellie was loaded into an ambulance for the 90-mile trip to Rochester, Minnesota. Nicole and Corbin followed behind in the family's car.

Once they arrived, the family met with Mayo Clinic Children's Center neonatologist Christopher Colby, M.D., who explained what they could expect with Ellie's surgery and recovery. Even though Nicole had years of health care experience, she was worried for her daughter. But she was reassured by the compassion and expertise of her colleagues.

"All the staff was just phenomenal," she says. "It made me feel like we were in the best possible place for Ellie."

A contrast study quickly confirmed the diagnosis, and Ellie's surgery began within one hour of her arrival in Rochester. Dr. Klinkner used Ladd's procedure to untwist and reposition Ellie's intestine and restore the blood flow. She also removed Ellie's appendix because its abnormal position could make acute appendicitis more difficult to diagnose in the future.

Ellie's surgery was a success, and she stayed in the neonatal ICU for five days to ensure her bowels recovered before returning home.

A positive outcome

Early identification and quick treatment led to a positive outcome for Ellie, says Dr. Klinkner.

"Ellie's mom is a registered nurse and an experienced mother, so she recognized the problem and brought her in early," says Dr. Klinkner. "New parents should watch for symptoms of intestinal malrotation in the first weeks of life when about 75% of cases happen."

Symptoms that should be evaluated promptly by a health care team include fever, low energy, poor appetite, swollen abdomen, vomiting green or yellow liquid, and little or no urine or bowel movements.

Six weeks after surgery, Ellie has recovered and is doing great. And her parents are recovering from this twist in her first month of life.

"She is perfect, and you can't tell anything even happened," says Nicole. "Everything went as smoothly as possible. It brings tears to my eyes when I think about her and our whole experience. We are so very thankful for the care that Ellie received."

This article originally appeared on the Mayo Clinic Health System blog.

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When he was in 5^th grade, Dane Cripe’s buddies gave him a cool nickname: Tony. As in Tony Stark, Iron Man’s alter ego. Like the superhero, Dane had an indent in his chest. While Iron Man’s came courtesy of an injury, Dane’s was the result of a condition he was born with: pectus excavatum. In people who have the condition, the breastbone is sunken into the chest.

“We’d first noticed a little indent when Dane was 5 or 6,” Andy Cripe, Dane’s dad, says. Because it was small and didn’t cause Dane any discomfort, “we didn’t think much of it,” Andy says.

But as Dane grew, so did the depression in his chest. By the time he was in 7^th grade, he’d grown self-conscious. Dane no longer felt like a superhero. “He’d started standing with his arms across his chest,” Andy says. “I didn’t like that.”

Andy and his wife, Susan, took Dane to see a surgeon at a hospital in their home state of Indiana.

“He told us Dane met the parameters to have the procedure covered by insurance,” Andy says. But the surgeon offered little additional guidance to the family, leaving them unsure if surgery was the right choice. “We talked about it, and Dane said, ‘Dad, it’s not hurting me. I can take the teasing.’ So, we decided against surgery.”

But within a few months, Dane began experiencing physical effects of the condition, which can compress the heart and lungs. “During football practice, he’d get winded when he was pushing really hard,” Andy says. Then, Dane’s chest began to ache and swell. “All of a sudden, he was hurting a lot and not sleeping well. I knew we had to get after this thing.”

The Cripes decided to get after a second opinion as well. “My dad had taken me to Mayo Clinic when I was a kid and no one else could diagnose me,” Andy says. “As an adult, I’d been through the Executive Health Program. I did some research and found that Mayo was the best at treating pectus excavatum.”

Mayo Clinic surgeons typically care for more than 1,000 children and adults with pectus excavatum each year. Mayo surgeons have extensive experience with the Nuss procedure, a minimally invasive pectus excavatum repair that involves raising the breastbone with a curved metal bar inserted through small incisions on the sides of the chest. They’ve also sought additional education on performing the procedure from Dr. Donald Nuss himself, who completed his surgical fellowship at Mayo Clinic.

Andy scheduled a video consultation with D. Dean Potter Jr., M.D. , a pediatric surgeon at Mayo Clinic Children’s Center in Rochester, Minnesota. After meeting Dane and reviewing his imaging tests, Dr. Potter recommended moving forward with surgery. He told the family that Dane was a good candidate for the Nuss procedure and at 14 was at an ideal age. “The best age for pectus repair is between 12 and 14 so that most of the child’s growth has occurred and the bar will not need to be upsized,” Dr. Potter says.

The Cripes set a surgery date and began making arrangements to travel to Mayo Clinic. “I was impressed by how very, very efficient the process was,” Andy says. “We got all of the insurance approvals set up. Anytime we had a question, we’d submit it to the portal and hear back quickly.”

Dane had surgery on Thursday, Feb. 25 and was released from the hospital the next evening. In between, he had a frequent visitor. “I could not believe how many times Dr. Potter came to check on him,” Andy says. “He was incredibly attentive. We didn’t want for any information or guidance.”

The Cripes spent an additional night in Rochester to ensure they were close to Dr. Potter if Dane developed any post-surgical complications. Then, they headed back home to Indiana.

Like his initial consultation, Dane’s follow-up appointments with Dr. Potter have all taken place virtually. “I was initially a little hesitant about making such a major decision without meeting Dr. Potter in person,” Andy says. “But using X-rays and CT scans, the condition is not hard to see. We’ve been blessed to have access to this technology. Without it, we would have had to make a minimum of five trips to Rochester. Not everyone has the time or resources to do that.”

In the months since Dane has had the procedure, Andy and Susan have noticed a number of what they call before and after’s. “Dane is standing taller and looked like he grew overnight after surgery,” Andy says. On a recent trip to Florida Dane hit the beach with his shirt off, just like his buddies. “He never would have done before surgery,” Andy says.

Stories like that are what keep Dr. Potter in the operating room.

“That’s why I come to work every day,” he says. “If I did not help kids and their families, I’d be in a different profession.”

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Travis Heidt was holding his son, Franklin, for the first time. "It was a very joyous time and also an overwhelming time," says the first-time parent.

He was unsure of how to hold Franklin, unsure of how to care for him. But Travis knew that he and his wife, Morgan, would figure it out. They had a beautiful boy. He and Morgan had created a family.

"The second that he came out, something changed inside of me," Travis says. "Everything was perfect. There was nothing else to think about."

That would soon change.

Little Franklin was born with a severely damaged heart. After just 24 hours of the "perfect bliss of a family," the Heidts were told their son had failed his newborn heart screening. He needed care beyond what was available in their hometown of Dickinson, North Dakota.

Franklin was flown first to a hospital in Fargo, and then to Mayo Clinic in Rochester, where doctors determined that to fix Franklin's broken heart, they would need to replace it. The Heidts' newborn son needed a heart transplant.

"You never imagine hearing that for anybody that you care about, especially your firstborn child," Travis says.

We've had so many doctors and residents sit down and essentially cry with us and talk us through some of the hardest parts of our life. It was just kind of amazing to be so supported.

Morgan Heidt

The Heidts were stunned. But in the hours after learning about Franklin's heart issues, Travis and Morgan made a pact.

"We came to the general consensus of whatever was best for Franklin, whatever would give him the most normal life, that's the route we would take," Morgan says. "From that point on, we decided that no matter what, as long as it was the best option for Franklin, that's what we would go forward with."

Franklin was listed for a heart transplant. Then his team needed to come up with a plan to make sure he would survive long enough to have the procedure.

Watch a video on Frankie's story

"The next decision point was how to keep him stable while he waited for a heart," says Elizabeth Stephens, M.D., Ph.D., a Mayo Clinic pediatric cardiovascular surgeon. "That's when as a team we had to think outside of the box."

The solution Dr. Stephens and her colleagues came up with was to place two devices, a pulmonary flow restrictor and PDA stent, in Franklin's heart.

"Reviewing his case with several of my other colleagues, we were able to offer Franklin a therapy that really didn't exist," says Jason Anderson, M.D., a pediatric interventional cardiologist. "We are on the forefront of utilizing this technology."

While it was a new approach, the team felt it was the right approach for Franklin.

"We want to adhere to what's best, and some of what's newest may in fact be the best," says Joseph Dearani, M.D., a pediatric cardiovascular surgeon and director of Pediatric and Adult Congenital Heart Surgery at Mayo Clinic in Rochester. "We want to be sitting on both sides of that treatment option for patients that come here for care."

We want to adhere to what's best, and some of what's newest may in fact be the best.

Joseph Dearani, M.D.

The devices worked as planned, keeping Franklin stable until he received a new heart when he was just 27 days old.

While their son's first month was stressful and frightening, the Heidts' say it was made easier by the support they received at Mayo Clinic.

"We've had so many doctors and residents sit down and essentially cry with us and talk us through some of the hardest parts of our life," Morgan says. "It was just kind of amazing to be so supported."

That support extended beyond medicine. Music therapists soothed nerves. A nurse arranged for a chaplain to baptize and anoint Franklin. And the doctors, nurses and others who cared for Franklin began to feel like more than the titles on their badges.

"The Mayo team started to become a family," Travis says. "It was a good feeling to have that sense of family at the hospital. There's nowhere else we'd rather have gone through all this other than Mayo."

The post A new heart, new hope for a newborn appeared first on Mayo Clinic News Network.

Linsey Rippy was 16 weeks pregnant with her second child when she learned her daughter, Madi, had dilated cardiomyopathy. She was just two-and-a-half years old.

“Our hospital in the Twin Cities ran every genetic test on Madi, but nothing came up,” Linsey said. “She’d had a virus a few weeks before, so they figured that’s what caused her to develop the condition.”

Doctors also figured that meant there was little risk of the baby Linsey was carrying — a girl she and her husband, Noel, would name Sydney — having the same condition. Still, they did a thorough check of Sydney’s heart soon after she was born.

“We got the all-clear,” Linsey says.

Just a few months later, Madi’s condition deteriorated, and the Rippys were told their daughter would need a heart transplant. She was placed on extracorporeal membrane oxygenation (ECMO), which took over the work of her heart and lungs. Then, Madi was transported to Mayo Clinic, where she received a new heart on Aug. 7, 2009.

After Madi recovered, the Rippys returned home and threw themselves into managing the care of a post-transplant patient. Life seemed to be settling into a new normal. Then, when Sydney was two-and-a-half, she too was diagnosed with dilated cardiomyopathy.

“I ran out of the exam room and into the bathroom and laid on the floor and cried,” Linsey says.

She didn’t stay there for long. In the years since, Linsey has become a fierce advocate for her daughters. She’s devoted herself to giving back — through toy drives, blood drives and other generous acts — for the gifts of life that keep her daughters alive. And she’s committed to celebrating every milestone that Madi and Sydney notch. One of the most recent was the 10-year anniversary of Sydney’s transplant, a marker that gave Linsey time to reflect on how far her youngest daughter has come.

Sydney’s journey

Sydney was listed for transplant on April 22, 2012.

Though Madi had waited less than 24 hours to be matched with a heart, the Rippys were told that was highly unusual and they should be prepared for a longer wait for Sydney — perhaps as long as six to 12 months. That’s when Linsey decided to try calling in a favor.

“My great grandma’s birthday was April 24,” Linsey says. “I said that if Grandma Lou has any power, Syd will get her heart on Grandma’s birthday. We got a call on the 24th that a heart was available. Syd had her transplant the next day.”

In the 10 years since then, Syd has become a familiar face at Mayo Clinic. Both she and Madi have multiple medical issues related to transplantation and the challenges they faced leading up to their life-saving surgeries, including developmental delays. That means lots of doctor’s appointments. And for most of them, the Rippys make the journey to Mayo Clinic.

“It’s 95 miles each way for us, and people ask us why we don’t transfer the girls’ care to the Twin Cities,” Linsey says.

There are many, many reasons, she says.

“We’ve had great care other places, but Mayo is a whole different level,” Linsey says. “I have never seen a facility that works so well. Everything is well coordinated. When the girls have a test, we get the results the same day. I talk to other transplant parents and they wait days or weeks for test results.”

There’s also a matter of trust, something essential when your children’s lives are in the hands of others.

“When we were first at Mayo, I didn’t leave the room,” Linsey says. “But I soon realized that I was okay going to get lunch or take a break. The staff treated my kids like their kids.”

Sydney and Madi would agree.

“When I tell the girls we’re going to Mayo, they get excited,” Linsey says. “They love all the people there. The staff spoils them. My kids aren’t mentally where other 13- or 16-year-olds are, but their doctors ask them questions and explain to them what’s happening in their bodies. The people at Mayo are just phenomenal, phenomenal people.”

That includes the girls’ cardiologist, Jonathan Johnson, M.D., (“Madi’s a little bit in love with him.”) and transplant surgeon, Joseph Dearani, M.D. (“He’s their superman.”)

“We’ve never felt rushed or stupid or like a number at Mayo,” Linsey says. “Whenever I have a question, I send a note through the portal and someone gets back to me right away. The team is literally always there for us. That takes a lot of burden off me.”

That team has expanded over the years to include researchers looking for a genetic answer to why both Madi and Sydney developed aggressive dilated cardiomyopathy at such a young age.

“It took them five years, but they found a new mutation,” Linsey says. “It’s technically not confirmed because our girls are the only two they know who have it. My kids are a Mayo-documented rarity.”

Feeling grateful, giving back

At home, those rarities are just two girls who love coloring and reading (Madi) and one-liners and Finding Nemo (Sydney). They don’t seem to recognize that they’re miracles.

“We celebrated Syd’s transplant anniversary, but I’m not sure she gets what it’s all about,” Linsey says.

She and Noel do.

“Our girls have issues, but they are running around and enjoying life,” Linsey says. “A lot of kids who need a heart transplant die waiting. We feel very blessed.”

For a long time, Linsey also felt guilty. She wondered if wanting hearts for her children meant that she was wishing for someone else’s children to die. Then someone helped her reframe the situation.

“Someone told me that what we’re hoping for is not that a child dies, but that if they do, that their parent or guardian says ‘yes’ to donation,” she says. “That freed me from my guilt.”

It has not made her any less grateful for the incredible gift of donation. Which is why she organizes blood drives or toy drives during holidays, her girls’ birthdays, and their transplant anniversaries. She knows what it is like to need – whether it’s a toy to distract a hurting child or a heart to keep a child alive. She wants to help meet the needs of others any chance she can.

“We are super grateful for what we’ve received, and we want to honor our donors for what they’ve given us,” she says. “This is one way we do it.”

Editor’s note: If you’d like to support the Rippy’s toy drive, you can shop their Amazon wish list. All donations go to Mayo Clinic or Ronald Mc Donald House in Rochester. 

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