Hailey Harsch
A few weeks ago, 18-year-old Hailey Harsch ate a big bowl of spaghetti Bolognese, a salad and breadsticks. While it might not seem newsworthy to report a teen enjoying a large Italian meal, for Hailey and her mom, Karen, this moment was a milestone to be celebrated. For her entire life, Hailey has struggled to eat. “I would usually eat two bites and then my body would start yelling at me — it’s like slow down, we can’t do this,” Hailey explains. For years, Hailey saw doctor after doctor but found no relief from constant stomach pain, nausea and an aversion to food. That is, until recently when Hailey received a life-changing diagnosis: median arcuate ligament syndrome (MALS). After a successful surgery at Denver’s HCA HealthONE Swedish to correct the rare condition, Hailey now is enjoying food for the first time and finally giving her body the nourishment it has been lacking.
‘It made me just want to not eat at all’
From as early as Hailey can remember, eating has been associated with pain. When she’d try to eat any type of food, she would experience what she describes a severe ‘pinching’ pain in her abdomen. The pain was almost always accompanied by nausea and severe bloating. “It actually became quite an ordeal at school — all through elementary school I would refuse to eat because I would be so nauseous; then I would throw up at school and have to come home. But my teachers and the counselors and everyone was force feeding me and it was pretty traumatic. It made me just want to not eat at all,” Hailey recalls.
But for any growing child, nutrition is important. And for Hailey, it was an especially vital component of her life. Born in Summit County and raised on the slopes, Hailey always has been a stand-out ski racer. From as young as age 5, Hailey was getting attention for her skill and talent on the mountain. She was ranked among the top ten in the United States and was on a path that could lead her to compete at an Olympic level.
But because Hailey was only able to take in a few hundred calories a day, her body was struggling to build the muscle mass needed to take her skiing to the next level. [By comparison, Olympic ski racer Mikaela Shiffrin (Hailey’s favorite celeb skier and former neighbor!) reportedly consumes about 3,000 calories a day.] “Hailey was training from sunup to sundown — in the weight room and on the hill — and she would faint because her body wasn’t able to get enough energy; I’d get calls from trainers saying she can’t be in the gym, she’s not eating,” Karen explains. Hailey adds, “It was heartbreaking for me. I was genuinely trying to eat but it was causing me all this pain.”
‘I wanted to get to the bottom of it’
Karen took on solving the mystery of Hailey’s pain as her personal mission and life’s calling. “I wanted to get to the bottom of it. I wanted her to eat whatever she wants to eat and to do what kids do and not have it hang over her head,” Karen explains. The duo visited doctor after doctor and had test after test performed. “She was given every diagnosis from reflux to constipated to eating disorders — you name it.” And yet, nothing was resolving the pain, nausea and aversion to food.
In 2017, Hailey’s ski team was competing in Aspen where she was undertaking her first downhill race. The course was a minute and half long — an incredible feat for any 14-year-old skier, but especially for Hailey’s barely 95-pound frame. “I just didn’t have the muscle mass. The last part of the course was a big jump. Right before I went off the jump, they clocked me going 78 miles an hour. I landed it but I snapped my ski when I landed. I did a little tumble and hit the gate with the back of my neck. I also hit my lower back on the other gate,” she explains. The accident led to significant injuries including a severe concussion and a compression fracture in her lower back. As a result of the fall, the family was referred to a new family doctor to manage her concussion and care going forward.
‘He just kind of put everything together’
This same physician remained the family’s doctor throughout the next several years and was the first to suggest an unusual diagnosis for her stomach issues. After seeing her for jaundice, knowing about her food aversions, nausea and other physical symptoms, he heard a slight, soft whooshing sound with his stethoscope called a bruit. “He just kind of put everything together and said, ‘I think you have MALS’” Karen recalls.
The term was unfamiliar to the Harsch family — as it is to many. Experts estimate MALS affects only two in every 100,000 people. MALS is median arcuate ligament syndrome, a rare condition that affects the median arcuate ligament, a band of tissue that arcs through the lower part of the chest. When it sits lower than usual, the ligament can press on the celiac artery — an important blood vessel that helps deliver blood to the stomach, liver and organs. When the artery is pressed upon, blood supply is cut off to the stomach and liver. The result is severe pain associated with eating. While some cases of MALS are the result of a trauma, others — like Hailey’s — are congenital (present since birth).
‘The whole way, the whole team did an amazing job’
Once additional testing was performed and the condition confirmed, Karen and Hailey started looking for an expert to correct Hailey’s MALS abnormality. A chance referral from a client of Karen’s led the Harsch family to Kian Modanlou, MD a of HCA HealthONE Swedish’s Center for Diseases of the Liver and Pancreas and Surgical Robotics Institute. While MALS is extremely rare, Dr. Modanlou’s unique area of specialization has afforded him several opportunities to correct the condition. Once a proper diagnosis had been solidified, Dr. Modanlou worked with his team to map out a customized surgical correction plan for Hailey. In early 2021, Hailey underwent surgery to relieve the ligament. In addition to relieving the compression caused by the median arcuate ligament, the surgical team also removed a life-time’s worth of scar tissue. “The whole way, Dr. Modanlou did an amazing job — and his entire team did amazing. They blew away my expectations,” Hailey explains.
‘I’m ready to take on the world’
Today, Hailey has a new lease on life. She is wrapping up her senior year of high school at Vail Valley’s Battle Mountain High School and recently skied her last race with the ski team. While she has been accepted to all seven colleges to which she applied, she is still weighing her options. In the meantime, she is continuing to recover—spending time with Aspen (her beloved Golden Retriever) and learning what it’s like to eat without pain.
For those facing undiagnosed pain or difficulty, she encourages “Stick with it and don’t lose hope. You have to find the positive in any situation and be grateful.” While she hasn’t committed to a major in college, Hailey has expressed interested in medicine and would like to advocate for more awareness of MALS. She also has found a passion in encouraging others through her social media outlets. She recently wrote “Our bodies are so amazing and allow us to do the things we love and should no longer be criticized… my scar is the newest addition to my body, and I am starting to believe that my scar is beautiful and has an amazing story behind it. I’m starting to look at scars the same way I look at pictures; as a memory and a story to reflect on… I have finally found relief and am forever grateful. I’m ready to take on the world, spread positivity and live my life to its fullest.”
Learn more about the Surgical Robotics Institute at HCA HealthONE Swedish.