For her first 28 years, Lauren Atherton seemed firmly in control of her life. She earned a degree in fine arts and graphic design in her native Michigan, where she worked successfully in advertising for five years. After moving to Colorado, Atherton built a freelance business with clients in the Boulder-Denver area. In 2017, she got married.

Unbeknownst to Atherton, however, her body held a silent threat – one that was to nearly wrest her life from her. A rare genetic disorder called Loeys-Dietz syndrome was steadily weakening the connective tissue in her body. The breaking point came on a December day in 2017. A mere six months after her marriage, with the next stage of her life stretched before her, Atherton lay on a hospital operating table, undergoing open heart surgery.

Atherton had suffered an aortic dissection: a tear in the inner wall of the aorta, the body’s largest artery and its crucial conveyor of blood. The rupture causes severe blood loss and is highly lethal if it is not treated quickly: up to 50% in the first 48 hours.

“Aortic dissection is incredibly dangerous,” said Dr. Amber Khanna, a cardiologist with the UCHealth Adult Congenital Heart Disease – Anschutz Medical Campus Clinic, who helps to care for Atherton. “Many people do not survive them, and any delay in surgery is associated with risk.”

A heart repair and life changes due to Loeys-Dietz syndrome

Fortunately, surgeons repaired Atherton’s dissection within four hours after she was rushed to the hospital. She slowly recovered, but the near catastrophe was only the beginning of profound changes in her life. Loeys-Dietz syndrome left her vulnerable to another dissection – more on that later – and its looming presence took a mental toll. But the trials also spurred Atherton to make positive changes in her life. She’s taken her design work in a new direction and made strong contributions to organizations helping others with Loeys-Dietz syndrome as well as Marfan Syndrome, a closely related genetic condition.

The turn began during a six-month recovery from the dissection surgery. “I focused on getting better, walking every day and watching what I was eating and drinking,” Atherton said. As time went on, she slowly rebuilt her freelance work but also broadened her life purpose. She joined the Loeys-Dietz Foundation (LDSF) Strategic Advisory Board and volunteered to help redesign the organization’s website and educate others with the condition. After the LDSF joined forces with The Marfan Foundation, the latter asked Atherton to do paid design work.

The two organizations are now clients of Atherton’s own company, HeartSpark, which she launched in February 2020. After years of design work with for-profit companies, her clients are now exclusively non-profits. The aortic dissection threatened her heart, but her near-death experience also convinced her to follow it.

“I want to be excited about what I’m creating and partner with people who have a good purpose behind what they’re doing,” she said. “My surgery propelled me to pursue what had been a thought at the back of my mind.”

Sudden aortic dissection and a trip to the brink of death

Neither aortic dissection nor Loeys-Dietz syndrome held any place in Atherton’s mind on that life-changing December day in 2017. She was at Empower Field at Mile High, helping a friend do some social media work for a Denver Broncos game. The two had gone below the stadium when Atherton felt a pop at the back of her throat. She then started getting a headache, which she assumed was a migraine and left the stadium early.

“I felt tired but didn’t think much of it,” Atherton said. She later felt pain between her shoulder blades and back – a symptom of an aortic dissection – but again chalked it up to fatigue.

Her symptoms worsened the next day. Atherton did some errands and fainted after she returned home. She let her husband, Brett, know about it but stayed at home for an afternoon meeting. A short while later, she fainted again. This time Brett called an ambulance, which took her to the hospital. She arrived, turning gray and then blue. Providers at first suspected a blood clot in her lungs.

In reality, Atherton’s Loeys-Dietz disorder had weakened and stretched her aorta. An aneurysm, or bulge, formed on the vessel and then ruptured, tearing the inner wall. Blood rushed in, depriving the rest of Atherton’s body of oxygen. Her providers diagnosed the emergency and rushed her to the operating room for surgery to repair the damage.

Atherton was oblivious to it all. “I didn’t know until the next day I’d had open heart surgery,” she said. She was also unaware of her close brush with death. “I thought we’d just fix it and move on.”

Loeys-Dietz diagnosis portends future problems

Far from it. Her surgeon suspected a connective tissue problem in someone as young as Atherton and ordered a genetic test that confirmed Loeys-Dietz syndrome. The diagnosis was both shocking and puzzling: none of Atherton’s family members have the genetic mutation responsible for the disorder.

There was more bad news. The emergency surgery took Atherton out of immediate danger, but she had another aneurysm, this one on the aortic root, which governs blood flow to the coronary arteries. That presented the prospect of another surgery.

Her reaction was understandable: “I’m not ready to think about that yet,” she recalls saying. “I went through surgery and am excited to move on. I don’t have to worry about it anymore.”

No, you do, her surgeon countered. The reality was that Atherton was going to have to face another surgery at some point. In the meantime, she would have regular imaging tests to gauge the threat presented by the aneurysm on the aortic root.

Addressing the mental health challenges of medical trauma

Atherton went on to recover from the surgery, change her career course and launch her new company. But about a year after the aortic dissection, she realized she also had to face the mental burden imposed by Loeys-Dietz syndrome and the surgery. She sought help from a therapist.

“I was grieving the loss of this life I thought I would have as a newly married woman,” Atherton said. “I survived a traumatic event, but I hadn’t thought about it in that way. It was life-changing, working through so much stuff and being guided through that process rather than trying to figure it out myself. I got the tools to keep moving forward. It was one of the biggest transformations that happened to me.”

Atherton also credits Khanna for her expertise in helping her address both the physical and mental challenges of her connective tissue disorder.

“She knows the medicine, symptoms and science,” Atherton said, “but she also inquired about the mental toll. She made me feel like, ‘You see me. You really understand what someone with Loeys-Dietz syndrome goes through.’”

For many patients, Khanna said, medical trauma “is equally stressful and life-impacting as other forms of trauma. We are working hard to learn how to better support our patients who experience it.”

With mental health assistance, patients like Atherton are capable of achieving “post-traumatic growth,” Khanna added.

“That means taking a traumatic experience and making positive life changes and finding something good,” she said. “Lauren has taken a traumatic event and turned it into something that has many positive aspects to it.”

Another aortic surgery

A little over three years after her first open-heart surgery, Atherton finally had to accept the necessity of the aortic root repair. Images showed the aneurysm had slowly grown, and her surgeon recommended a proactive procedure to head off the risk of another rupture. She absorbed the news and reluctantly agreed. She and Brett traveled to Michigan to see her parents, then began the task of selecting a surgeon.

The surgeon who had saved her in 2017 had moved out of state, but recommended thoracic and cardiac surgeon Dr. Brett Reece, head of the UCHealth Comprehensive Thoracic Aortic Program and a specialist in aortic root replacement. Atherton met Reece, was impressed with his experience, kindness and expertise and chose him to perform the surgery.

Reece successfully replaced both the aortic root and arch at UCHealth University of Colorado Hospital in March 2021. Thanks to the proactive approach, Atherton had a much shorter three-month recovery time, and she credits the hospital team for helping to ease her fears and anxieties about the procedure. She also benefited from cardiac rehabilitation, which helped her recover her strength, find her limits and build camaraderie in “a little bonded unit” with others recovering from heart problems.

Savoring life amid uncertainty

A little over two years after the aortic root surgery, Atherton said she “feels great that I can get on with my life.” She continues to grow HeartSpark. Under Khanna’s care, she takes medications to protect her heart. Still, successful surgeries don’t change the fact that Atherton has a genetic disease that is not going away. She has an abdominal aneurysm that must be monitored, along with regular imaging tests of the rest of her body’s vessels. Her disease also increases the risk of problems in other parts of her body, which underscores the importance of having a multidisciplinary team at UCHealth to address both her surgical and medical needs, Khanna said.

“The tissue will continue to weaken,” she said. “There is no significant treatment to stop that process.”

Atherton acknowledges that reality. “It’s always in the back of your mind,” she said. “I’m constantly aware of my body. I wonder why I am stuck in this body that is not going to get better but only degrade over time.” She added, however, that at 34, she has an awareness of her physical fragility that many people don’t grasp until they are much older.

“I understand that my relationship with my body now may allow me to live longer and have a balanced approach with it,” Atherton said.

In the meantime, she savors the work she is doing. She and Brett have a new house and are enjoying opportunities to travel. Lauren Atherton doesn’t downplay the loss and hardship she’s experienced since the traumatic day in 2017, but chooses to focus on what lies ahead.

“I’m living parts of that life I always thought I would have,” she concluded. “I’m maintaining contentment and concentrating on the little things to look forward to.”