Heading into finals week, Flathead High School student Katelyn Baughman was ready to graduate early and excited to plan for college. 

But all of that was upended in one night.  

The former junior varsity cheerleader had been experiencing shortness of breath and chest pain for a few days, symptoms that overcame her in a physical education class.

The 17-year-old went to urgent care, unaware of how dire her situation was or how quickly her health would deteriorate over the next few days. 

“The main reason we took her in was to get a doctor’s note to excuse her from having to do the P.E. final,” her father Travis Holmquist said. 

What the Jan. 20 visit revealed was far more serious: an enlarged heart.  

“The doctor didn’t hear what they usually do on the left side [of her chest] and did an EKG. That’s when they found abnormalities and immediately called the pediatric cardiologist,” her mother Debbie Holmquist said. 

On Jan. 21, Katelyn underwent an echocardiogram. She was admitted to the pediatric intensive care unit at Logan Health Children’s in Kalispell a few hours later. Although scheduled for an airlift to Seattle Children’s the next day, her health worsened. Around 2 a.m., she began having cardiac arrhythmias. 

There was no more time to wait.  

With a storm preventing the flight to Seattle Children’s, the Holmquists decided to have their daughter airlifted to Intermountain Primary Children’s Hospital in Salt Lake City. 

“They had her on oxygen and placed her on the stretcher, got her prepared for the flight. During that time, we didn’t even know the severity of it in the shock from all of it,” Debbie said.    

With enough room on the ALERT II plane for one family member, Debbie got on while Travis stayed home to care for their other two children. 

It was nearly 4 a.m. when the plane landed. The following days were a blur, Debbie said, as her daughter lay in intensive care, hooked up to monitors and machines to stabilize her symptoms. Katelyn would remain in intensive care for about a week. 

The Holmquists were told by doctors that their daughter’s heart was functioning at 30%. Genetic tests were ordered to identify the cause of the obstruction. 

“She showed little improvement and they moved her to the critical care unit,” Travis said. “They ended up putting an implant in her and ICD (implantable cardioverter-defibrillator).” 

Katelyn was released from the hospital Feb. 6 and moved in with her mother who had been staying at the Ronald McDonald House in Salt Lake City. 

“Discharge felt like a victory,” Travis said.   

Five days after being released from the hospital, Katelyn’s genetic test results came back. She was diagnosed with a rare genetic condition called Danon disease, which primarily affects the heart, muscles and sometimes the brain.

For Katelyn, Danon disease had damaged her heart. Her heart muscles were thickening, a condition known as hypertrophic cardiomyopathy, which makes it harder for the heart to pump blood. She also experienced life-threatening arrhythmias. Doctors explained that hypertrophic cardiomyopathy is a progressive disease that worsens over time.   

A heart transplant was necessary. 

“The diagnosis shifted everything,” Travis said. “She went from coming home to putting her on the heart transplant list.” 

UNDERSTANDING THEIR daughter’s condition and care has been a learning curve. 

“It’s been a fire hose of information,” Travis said. 

“It’s a flood of information, for sure. Sometimes you think you’ve got it all figured out and there’s something else you learn,” Debbie said.  

“We went through a heart transplant bootcamp — an eight-hour meeting with the entire team — heart surgeon, nurses, social workers,” she noted. 

While waiting for a new heart, Katelyn and her mother will remain at the Ronald McDonald House to be close to the hospital and the medical team for weekly appointments and for when a heart is ready for transplantation. 

On the heart transplant list, Katelyn has “intermediate priority” status, a step below high-priority cases on a three-tiered system, according to the Journal of the American Heart Association. She also has “pediatric priority,” a designation that won’t change when she turns 18 next month, which Debbie called a blessing. 

Katelyn’s medical needs will continue even after a heart transplant. 

“She won’t have an immune system for the year following because of medicines so the heart won’t be rejected and there will be continuous appointments and isolation as she’ll be susceptible to what they call the three monsters — rejection, infection and a possibility of cancer that happens,” Debbie said.  

Katelyn has begun settling into a routine of weekly appointments and visits from her father, who travels to Utah whenever he can. Being far from home is an adjustment for mother and daughter. 

“She’s a strong girl,” Debbie said of Katelyn. “She’s doing pretty well and is pretty tired of the blood draws every week and multiple appointments. She’s continuing to rest because she does get tired pretty easily."   

Katelyn said she’s feeling a lot better since being released from the hospital with the implantable cardioverter-defibrillator.   

“In the ICU, I was terrified. I thought I was going to die,” Katelyn said, briefly joining a phone interview. 

“I was really struggling mentally as it progressed. I almost accepted it and tried to, you know, think of better, positive ways to look at it and the whole situation,” Katelyn said. “It’s been tough. Obviously, I didn’t expect to go through this.”   

Transitioning into a new way of living that entails a lot of resting has been a big adjustment. She said that the implant has regulated her heart rhythm to where she can walk around for longer periods of time.   

While the ordeal has taken a physical and mental toll, she tries to keep moving forward.  

“I have to kind of look at the good aspects of it. I’m going to have a full life and a happy life, thanks to the doctors here,” Katelyn said.   

Although the diagnosis has derailed her plans, she still wants to go to college, although it will probably be done online. She hopes to become an art therapist.  

“I enjoy talking to people and enjoy art. I want to work with younger children,” Katelyn said. “I’ve been into art ever since I was younger. I love drawing. It’s also another way for me to cope with everything. It helps my mind." 

While her college plans are on pause, she has been able to dream a little when Make-A-Wish contacted her. Since she missed prom, her wish includes an “Umbrella Academy” themed prom with live music and her family and friends and cast members of the popular Netflix superhero series in attendance. 

“It gives her something to look forward to,” Debbie said. 

AS FOR her parents, “We’re doing OK; we’re not fearful of the situation, but we’re mindful she could be readmitted. It’s just really hard to adjust,” Debbie said. 

 Amid the medical emergencies, both are in college, and Travis continues working. Debbie is on track to finish a master’s degree in clinical mental health counseling and Travis has about two years to go in completing a doctoral degree in clinical mental health counseling. 

With flights to Utah being expensive, Travis said he plans to start driving. Yet, that may also add up with gas prices soaring.  The family, whose lives have been upended, have also taken a financial hit and set up a GoFundMe  and Venmo account to cover expenses. The cost of their daughter’s initial hospital stay and medical flight alone sits at more than $100,000, Travis said. Since Medicaid coverage kicked in in mid-February, the medical bills have become more manageable. 

“[Medicaid] approved the heart transplant and so that’s covered going forward and they’ve been covering the majority of the visits and medications, so, it’s been manageable since it was in place. But it’s those first 11 days ...” Travis said. 

“Thankfully, the Ronald McDonald House will let us be there up to a year, figuring out where to stay for the remainder is a big challenge for us coming up,” Debbie said. 

The family expressed gratitude for the financial support and well-wishes they have received from the community. Their family also includes three adult children. 

Reflecting on how the life-altering experience has changed them as parents gave them pause.    

"I think it’s definitely taken resilience, and it has helped us focus on even the smallest wins and what we can control, because life is precious and you never think your children are going to go through something like this. It turns your life upside down," Debbie said, adding, "It helps me to see how amazing our community has been.”   

“It’s hard to find words to really express what this has been like,” Travis said. “You see movies or hear stories, but when it hits your doorstep, it’s definitely different when you walk through it.”   

“My wife is my best friend and to be away from her ... . We’re handling things OK at home but missing my daughter, who should be here working and preparing for college,” Travis said. “It's just a big shift in plans. We’ve learned to live one day at a time.” 

Their faith has helped them through, he said. 

“Our faith, the way Jesus has shown up for us, strengthens us and carries us through the hard times. Without our faith, I don’t know how we’d be able to walk through this,” Travis said. “Our faith has been central.” 

Donations can be made through GoFundMe at https://tinyurl.com/katelynsheart or via Venmo: @Travis-Holmquist-213. 

Reporter Hilary Matheson can be reached at 406-758-4431 or [email protected]. If you value local journalism, pledge your support at dailyinterlake.com/support. 

    Seventeen-year-old Katelyn Baughman, who is awaiting a heart transplant, was airlifted to Intermountain Primary Children’s Hospital in Salt Lake City in January. (Courtesy photo)
  

    Seventeen-year-old Katelyn Baughman and her mother Debbie Holmquist. (Courtesy photo)