Born with a “rare heart,” little Lilly celebrates her one-year transplant anniversary

Lilly Olson was diagnosed with not one but five separate congenital heart defects. On Dec. 31, 2019, she was added to the heart transplant list. Just 10 days later, her care team found her a matching heart.

Lilly Olson was diagnosed with a combination of five different congenital heart defects. On Jan. 11, 2020, she received a heart transplant at M Health Fairview University of Minnesota Masonic Children's Hospital. Hers was one of a record 13 pediatric heart transplants performed that year at the hospital.

Pediatric Heart Surgeon Sameh Said, MD, FACS, has fixed hundreds of hearts. But even by his standards, little Lilly Olson stands out.

“I’ll always remember Lilly,” Said recalled. “She had a very rare combination of heart defects. It took a great team effort to get her through all of this. We never gave up; we just kept going.”

Lilly’s journey started in August 2019, when her parents Lindsey and Chad Olson welcomed her into the world at M Health Fairview Lakes Medical Center. During one of her routine newborn health checks, a doctor heard a louder-than-usual heart murmur and ordered an echocardiogram for Lilly, who was just two days old.

A few minutes after the test was complete, the Olson’s care team told them an ambulance was on its way. Lilly needed urgent heart surgery at the Heart Center at M Health Fairview University of Minnesota Masonic Children’s Hospital.

A little girl with a rare heart

Lilly’s parents soon learned she had not one but a combination of five different congenital heart defects. The most serious of these was a very rare defect called congenitally corrected transposition of the great arteries (CcTGA). In people who have this defect, the heart’s two lower chambers – called ventricles – are reversed. The defect can cause abnormal heart rhythms, heart valve damage, and even heart failure. Lilly’s aorta, the main blood vessel leaving the heart, was also much narrower than normal. Finally, her tricuspid valve, which separates two chambers on the right side of the heart, was weakened, causing blood to leak between the chambers.

Lilly had her first surgery when she was just days old to correct the critical narrowing in her aorta, followed by two more a few weeks later to repair her tricuspid valve. These early surgeries were designed to give Lilly time to grow before her “big operation” – a fourth surgery that would switch the position of the two blood vessels connected to her heart and two of her heart’s four chambers as well. This procedure is called a Double Switch Operation.

But Lilly struggled to grow or gain weight over the next five months at the hospital due to her heart failure. Worried that the heart surgery would not be successful, Lilly’s care team changed plans after meeting with her parents. On Dec. 31, 2019, they put Lilly on the list for a heart transplant.

They found a matching heart just 10 days later. On January 11, 2020, Said and his team performed the successful transplant – the first of a record 13 pediatric heart transplants performed in 2020 at
M Health Fairview University of Minnesota Masonic Children’s Hospital.

Lilly and her family were in good hands every step of the way. The Heart Center at M Health Fairview University of Minnesota Masonic Children’s Hospital has grown dramatically in recent years. The hospital is one of the top 10 highest-volume centers in the country for pediatric heart transplants.

“We use a full team approach. We look at all surgical and medical options and make team decisions. We think of heart transplant as a measure of last resort, when we have exhausted all other options,” said Pediatric Cardiologist Rebecca Ameduri, MD, who leads Lilly’s long-term care.

“The doctors, nurses, and staff at Masonic become your family as you go on a journey like this – especially during COVID-19, when you can’t have visitors and can’t meet other patient families. We relied on the staff for that support and connection,” Lindsey Olson said.

Coordinated care every step of the way

A key part of that connection comes from the hospital’s team of pediatric heart transplant care coordinators.

“Our role is to help support, educate, and guide families and patients throughout their transplant journey,” said Care Coordinator Kristy McHugh, RN, BSN, CTC, who was part of the Olson’s care team. “We work with patients and their families, from their first steps all the way to transplant and, eventually, their transition to adult care.”

McHugh and fellow coordinator Alyssa Sakhitab-Kerestes, RN, MN, MPH, serve as the primary points of contact for each family. They help families schedule appointments, find answers to medication questions, locate support resources – and anything else that comes up along the way.

This personalized approach had a big impact on the Olson family during Lilly’s transplant journey.

“I don’t even have the words to describe how amazing they are,” Lindsey Olson said. “For seven months I watched them fall in love with my daughter, I watched them care for her as if she was their own, I watched them read her books, hold her hand, rock her, and get down on the floor mat and play with her. Most importantly, I watched all of them save her life every day.”

Today, Lilly is thriving. She’s walking, talking, meeting developmental milestones, and growing every day. Her supportive older sister, 7-year-old Eva, has also been a huge part of Lilly’s growth and success, Olson said.

As their family prepares to ring in the New Year together, the Olsons will also be celebrating another happy milestone: Lilly’s one-year “transplant anniversary.”

“You would never know that she had ever been sick. She’s happy all the time,” Olson said.

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