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.

The post Unexpected vacation ending leads to rare tumor discovery appeared first on Mayo Clinic News Network.

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.

The post A newborn’s twist leads to emergency surgery appeared first on Mayo Clinic News Network.

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.”

The post Indiana boy standing tall and hitting the beach after surgery to correct pectus excavatum appeared first on Mayo Clinic News Network.

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. 

The post Celebrating 10-years with a new heart – just like her big sister appeared first on Mayo Clinic News Network.

Woody Hust, an athlete and outdoorsman, is living his dream in the Rocky Mountains. It's a picture-perfect existence made even more special because he's achieved his goals despite having a congenital heart defect. Thanks to the lifelong, personalized care Woody's received from his Mayo Clinic cardiologist, the sky continues to be the limit for him.

For nearly as long as he's walked, Woody Hust has skied. Fitted into his first pair of skis at just 17 months by his ski instructor parents, he grew up on the slopes. By his teen years, his talents and love of the sport had propelled him to competitive racing, where he qualified for the Junior Olympics when he was 15.

"It's probably my biggest passion," says Woody, who's now 25. "I don't know what I would do without skiing. When I'm skiing, I'm just in my happy place."

Woody's devotion to the sport and savvy on the slopes are all the more remarkable because he was born with a congenital heart defect. The condition, called critical aortic valve stenosis, has required him to undergo five open heart surgeries — three of them at Mayo Clinic. 

While many factors contribute to Woody's athleticism, the encouragement of his parents and the supportive care offered by his Mayo Clinic pediatric cardiologist Allison Cabalka, M.D. — who became Woody's doctor when he was in utero — rank high on the list of reasons for his continued success.

"I'm lucky," says Woody, who lives in Whitefish, Montana, and works as a ski instructor and a forester for the state of Montana. "I've come a long way, and I've gotten to do everything I've wanted to do, and I credit that to Mayo Clinic. I feel fortunate to be able to get the care that I've gotten at Mayo."

As is the case with some people who have congenital heart defects, Woody lives with activity restrictions to protect his heart health. In Woody's case, those restrictions have been carefully developed through years of testing his limits.

"Woody has always been an avid outdoorsman and athlete with downhill skiing, and now living in Montana with outdoor activities and working in the forest industry," Dr. Cabalka says. "I think he's coped very well with his limitations. He might be a little superhuman."

Treating a life-threatening defect

Woody's history of defying the odds started just after birth, says his mom, Heidi, explaining that when Woody's heart defect was identified at 6 months' gestation, Dr. Cabalka — who at the time worked at a medical center in Minneapolis — became his cardiologist. "His aortic valve was a lump, and he had critical valve stenosis," Heidi says.

Just four hours after he was born, Woody underwent his first open-heart surgery. During the valve repair, his misshapen and narrowed aortic valve, which is the main pump to the body and normally has three cusps to regulate blood flow, was opened up and reformed into a bicuspid valve.

For six weeks after surgery, Woody remained connected to breathing support in a neonatal ICU in the Twin Cities, and he struggled to heal. More than once, doctors told his parents their son would not survive the night. During this time, members of Woody's surgical team urged the family to allow them to give Woody an artificial heart valve, emphasizing that without a new valve, he wouldn't thrive.

But Dr. Cabalka was firm in her belief that Woody would fare better if left to grow and develop without an artificial valve. "So we let him sit and grow. Dr. Cabalka was adamant that was the best solution," Heidi says. "And he was fine. He pulled out his own breathing tubes at 6 weeks old and started eating. It was amazing. He was so strong. He's a really tough kid."

Overcoming significant hurdles

Woody's resilience was tested time and time again. As a kindergartener, he required his second open-heart surgery, which was performed at a hospital in Michigan. Known as a Ross-Konno procedure, the surgery entailed replacing Woody's abnormal aortic valve with his own pulmonary valve. In place of the pulmonary valve, a human donor valve was placed.

"We were so grateful we followed Allison (Cabalka) down to Mayo because we definitely got the cutting-edge care that was right for Woody."

Heidi Hust

When Woody was 15, Dr. Cabalka, who by then was working at Mayo Clinic in Rochester, recommended a third surgery. This operation, which was performed by Mayo Clinic cardiovascular surgeon Joseph Dearani, M.D., replaced the valve and aortic root, which is the portion of the aorta closest to the heart. In addition, the pulmonary valve that had been implanted a decade earlier was replaced with a bovine valve.

Nine months after surgery, however, the bovine valve became infected with a rare, hard-to-identify microbacteria. The infection required a month-long hospitalization and a fourth surgery to replace the damaged valve, giving Woody a new pulmonary valve.

"We were so grateful we followed Allison (Cabalka) down to Mayo because we definitely got the cutting-edge care that was right for Woody," Heidi says "They looked at what Woody needed and when he needed it. We had so much confidence in Dr. Dearani when we met him. We were just really scared, and he helped."

For Woody, managing his hospitalizations and recovering from surgery has always been closely linked to skiing. "Whenever I was having a hard time in the hospital, I'd visualize myself skiing and imagine I was in my favorite spot," he says. "I kind of use it as my benchmark after surgery: How quickly can I ski again?"

For Woody's parents, encouraging their son to pursue his goals while guarding his health was a balancing act. "Raising him was difficult because he didn't outwardly show these signs," Heidi says. "We always raised him that he should just try anything, but sometimes it's a modification. While we understood the risk, we let him try things once."

Changing course

Following back-to-back open-heart surgeries as a teen, Woody realized that he would be unable to pursue a career as a competitive skier, but that didn't stop his dreams of earning a living on the slopes. Following high school, he moved to Montana and took a position requiring familiarity with the nature in forested, mountainous regions.

Woody's job is physically demanding, often entailing 5- to 6-mile hikes to job sites. During his off hours, he routinely practices backwoods skiing, which involves skiing in areas not outfitted with lifts, boundaries or safety patrols. Despite the physicality his job and hobbies require, Woody embraces his active lifestyle.

"Sometimes I have to be a little careful, but I am open with my friends about it and tell them what is going on," Woody says. "People are open and accepting of it, and I'm still able to do everything I want to do."

In fall 2019, however, the demands of the work began weighing on him. "I could feel myself slowing down," Woody says. "I'd get home after a hard day of hiking, and I just had to go sit on the couch and recover for the next two days."

"After the operation, I felt like a different person, in a really good way."

Woody Hust

At his next appointment with Dr. Cabalka, the decision was made to refer him to Dr. Dearani for his fifth open-heart surgery. "His aortic valve worked really well for many years, and then eventually started to leak," Dr. Cabalka says. "The leakage caused blood to back up into Woody's heart and necessitated another surgery where Woody received an artificial, mechanical aortic valve."

"After the operation, I felt like a different person, in a really good way," Woody says. "I have more energy. My heart rate is not as high. My heart doesn't pump when I'm doing those activities, and all around I feel a lot better."

The best part for Woody, who was back to skiing six weeks to the day after his surgery, was how the operation enhanced his performance on the slopes. "It's definitely improved my ability to ski. It's a big positive to have gotten that surgery."

Forging close relationships

With the mechanical valve keeping his blood flowing smoothly, Woody should not need another open-heart surgery for a long time, Dr. Cabalka says. "We hope these valves will be really durable for most of his life. Barring infection or other issues, they could last many, many years."

When the time comes for Woody to receive a new pulmonary valve, the hope is that the valve can be replaced with a transcatheter valve, which would use a catheter inserted through the femoral artery, rather than open-heart surgery, to place the valve, Dr. Cabalka says.

To ensure that his heart valves and his heart function remain normal, Woody will continue visiting Dr. Cabalka annually for checkups. The visits are something he looks forward to. "It's been cool to go on this journey, from when I had that first surgery at Mayo at 15 to now, to be able to go back, just to say hi," Woody says. "I feel so cared about and valued there. I know a lot of other people with congenital heart defects who go elsewhere, and they don't have the same stories."

Visits with Woody and his parents are happy occasions for Dr. Cabalka. "We do have the medical visit, but then we spend the rest of the time chatting about their family and my family," she says. "It's always nice to have the personal relationship. It's this rewarding part of the doctor-patient relationship in Pediatric Cardiology that we really appreciate. As someone who's been able to care for Woody through his entire life so far, it really is a privilege to be able to see this young man grow up to the amazing person that he is."

HELPFUL LINKS

• Read more about congenital heart defects.
• Check out Mayo's Center for Congenital Heart Disease.
• Learn more about Pediatric Cardiology at Mayo Clinic.
• Visit the Mayo Clinic Children's Center.
• Request an appointment.

The post Embracing His Heart’s Passion, Despite Congenital Heart Defect appeared first on Mayo Clinic News Network.

For Jordyn and Michael Threat, having a premature baby was frightening on its own. Then learning that their firstborn, Lorelei, had a potentially fatal digestive system disease was an additional shock. But despite her size, Lorelei was tough. And with the support of a compassionate Mayo Clinic team, she rebounded time and again.

Lorelei Threat is a spunky, curious 2-year-old with a passion for purees. She goes bananas for bananas, but she couldn't care less about foods that are hard, crunchy or chewy. Lorelei's dietary quirks are thanks in part to the fact that she is a choosy toddler. But her pickiness about what she eats also is rooted in how food leaves her body, which, for Lorelei, was a life-threatening process as a newborn.

Shortly after being born prematurely on Sept. 17, 2017, at 30 weeks gestation, and weighing just 2 pounds, 4 ounces, Lorelei developed necrotizing enterocolitis, or NEC. With this condition, the wall of a premature child's intestine becomes overrun by bacteria that cause infection and inflammation. It affects 5% to 10% of all low birthweight babies, and it's one of the leading causes of death in premature infants.

"This is a scary diagnosis, and it can develop really quickly," says Lorelei's mother, Jordyn, who is a Mayo Clinic pharmacy technician.

Although the condition threatened Lorelei during the first several weeks of her life, the tender and fastidious care provided by a team of Mayo Clinic neonatal nurses, neonatologists and pediatric surgeons allowed her fragile body to overcome the difficult disease.

"I don't know where we'd be without Mayo Clinic," Jordyn says. "We have a lot of specialists here that I don't think we'd get elsewhere. We've had our ups and downs — moments where I've felt overwhelmed, and then times where I'm like, 'Whoa, things are starting to improve.' But we are at a point now where we're doing well with Lorelei. I feel like we receive great care at Mayo."

Frightening diagnosis follows sudden arrival

Even before Jordyn gave birth to Lorelei, the mother-to-be knew her family was in good hands. Diagnosed with preeclampsia, Jordyn was hospitalized at Mayo Clinic Hospital – Rochester, Methodist Campus when she was 28 weeks pregnant. One morning, after several weeks in the hospital, Jordyn woke up feeling ill. Her obstetric team began monitoring the baby and saw that the child's heartbeat was dropping. The team performed an emergency cesarean section and delivered Lorelei.

When Jordyn regained consciousness following the delivery, Lorelei was awaiting transport to the Neonatal ICU at Mayo Clinic Hospital – Rochester, Saint Marys Campus. "I got to see her for a couple of minutes, and by the time my husband, Michael, got there, she was ready to go," Jordyn recalls.

In the Neonatal ICU, Lorelei's care team fed her. After about four days, however, Lorelei began having blood in her diapers — a symptom of necrotizing enterocolitis.

Although it's not clear what causes necrotizing enterocolitis, says Denise Klinkner, M.D.,  Lorelei's surgeon, the condition usually involves the portion of the small intestine near the ileocecal valve, which separates the small and large intestine. In infants with necrotizing enterocolitis, bacteria normally living inside the intestine pass into the intestinal wall and cause infection and inflammation. In severe cases, the intestinal wall develops holes through which air and stool can pass.

"If there are holes in the intestine, we can see free air on the X-ray," Dr. Klinkner says. "Lorelei did not have that." In Lorelei's case, the condition was moderate enough to be managed medically with IV antibiotics and IV nutrition.

"(Dr. Klinkner) did a great job of displaying her confidence and was really reassuring."

Jordyn Threat

Lorelei received her nutrition through the IV feedings for 14 days while her body responded to the antibiotics and healed. "Once she got better, they tried feeding her again," Jordyn says. "But she got NEC again."

This time, Lorelei's symptoms included vomiting, as well as bloody stools. Again, oral feedings ceased, and IV antibiotics and IV nutrition started. Fourteen days later, oral feedings resumed. Again, Lorelei struggled to eat. "She wasn't keeping anything down," Jordyn says.

X-ray imaging revealed that the repeated inflammation and healing had damaged Lorelei's sigmoid colon — the portion of large intestine closest to the rectum. "She had a narrowing in the sigmoid colon and ileocecal valve that made it hard for things to pass through," Jordyn says. "She needed surgery to remove those strictures, so she could eat."

Healing prompted by careful surgery

For Jordyn and Michael, sending Lorelei to surgery after such a rocky start to life was scary. But Lorelei's medical team eased their anxiety. "The night before Lorelei's surgery was really special." Jordyn says "Dr. Klinkner came in to talk to us about the risks and benefits of the surgery, told us what to expect and asked what my fears were. We talked about her experience as a surgeon. She did a great job of displaying her confidence and was really reassuring."

During Lorelei's operation, Dr. Klinkner checked the affected gastrointestinal structures with a camera to determine if the procedure could be performed less invasively using laparoscopy. But that wasn't an option. "Her intestine was so distended that I did an open incision," Dr. Klinkner says.

First Dr. Klinkner removed a stricture that had formed in the sigmoid colon. Next Dr. Klinkner addressed the ileocecal valve, through which stool was having a hard time moving. Although some stool could move slowly through, it wasn't clear whether the damaged tissue was causing Lorelei's persistent symptoms. As part of the operation, Dr. Klinkner tested the elasticity of the valve tissue to check if it opened normally. It didn't. "We removed those two segments of bowel and reconnected everything," Dr. Klinkner says.

A few days following surgery, after Lorelei's body had a chance to recover, her medical team fed her through a feeding tube. "If you feed directly into the stomach, it has a better chance of staying down than her swallowing it," Jordyn says. "So we did that first and slowly built up a tolerance and then gave her bottles."

When Lorelei was able to take bottles regularly and gained enough weight to pass the car seat test to ensure she would be safe riding in a vehicle, she was discharged from the hospital. "We went home on Thanksgiving Day in 2017, and that was huge for us," Jordyn says. "The fact that we could go home and have dinner with our family was major."

Long-term relationships support recovery

At home, Lorelei continued gaining weight. But five weeks after she came home from the hospital, she developed a Clostridium difficile infection, or C. diff, and had to be hospitalized again. "She was so dehydrated, and had terrible vomiting and diarrhea, so she was hospitalized for about a week," Jordyn says.

People who've had C. diff are more susceptible to developing the infection again, and Lorelei had two additional bouts of it within her first year of life. "Having this over and over again gave us a referral to a gastroenterologist, and we've been seeing them ever since," Jordyn says.

"With Mayo, we are well-equipped, well-supported and connected, so we are set up for the long term."

Jordyn Threat

The relationships the family has established through Lorelei's medical journey help them navigate ongoing therapies for setbacks, such as developmental delays and chronic constipation, related to Lorelei's medical issues. "She didn't fully walk on her own until she was 2, and she still doesn't eat hard food on her own," Jordyn says. "We're working really hard with occupational therapy and with the Help Me Grow program to work on these things."

Help Me Grow, an interagency initiative of the Minnesota departments of Education, Health, and Human Services, provides Lorelei routine support in the form of physical, occupational and speech therapy.

As Lorelei grows, her parents will stay in close communication with her Mayo care team, which includes Molissa Hager, a nurse practitioner, and Rayna Grothe, M.D., and Mounif El-Youssef, M.D. — both pediatric gastroenterologists. "Everyone who takes care of Lorelei has an interest in our lives and wants the best for her," Jordyn says. "With Mayo, we are well-equipped, well-supported and connected, so we are set up for the long term. It's going to take a while, but I think we'll eventually get to that point where she's fully recovered and caught up from being premature."

For parents of children with chronic gastrointestinal issues, it's important for providers to make positive connections with the families, Dr. Klinkner says. "This disease does lead to long-term relationships with families, and hopefully we can help parents go through what is often a very stressful time."

HELPFUL LINKS

• Read more about premature birth.
• Learn about Pediatric Surgery at Mayo Clinic.
• Check out Mayo Clinic Children's Center.
• Explore Mayo Clinic.
• Request an appointment.

The post Tiny But Mighty, Lorelei Overcomes Devastating Digestive Disease appeared first on Mayo Clinic News Network.