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Summer Ostlund is a busy baby who always has a smile on her face. Like most 1-year-old infants, she is on the move, crawling and pulling herself up, playing with her sister and making her family laugh. But a rare heart condition found last year tested Summer’s strength.

In January 2014, Summer became the 800th person to receive a heart transplant in the history of the University of Minnesota. She is also one of the youngest people to ever receive a heart transplant.

Last November, Summer’s parents, Tom and Tori Ostlund, thought 2-month-old Summer may have caught her older sister Vera’s cold. They brought Summer to her pediatrician, who was worried about her heavy breathing and lack of weight gain. A chest X-ray quickly revealed a severely enlarged heart.

Within the hour, the Ostlunds were sent to the emergency department at University of Minnesota Masonic Children’s Hospital, then the cardiovascular intensive care unit, where Summer was diagnosed with idiopathic dilated cardiomyopathy. Summer’s parents were told that she needed to be placed on the heart transplant list at the highest priority. For the Ostlunds, Summer’s ordeal felt surreal.

“We, like most parents, never dreamed we would be in a fight for a child’s life. The gravity of this is starting to become clearer,” the Ostlunds wrote on Summer’s CaringBridge page the day after her diagnosis.

A lifesaver
Over the next several months, Summer bravely endured four open-heart surgeries, including a 10-hour operation to implant a Berlin Heart EXCOR® pediatric ventricular assist device—an external machine designed to keep kids’ hearts strong until a donor heart becomes available. Only a small number of hospitals in the United States have received approval from the FDA to use the device for children.

“The Berlin Heart saved Summer’s life,” Tom Ostlund said. “Without it, Summer may not have survived to a transplant. It afforded … her surgeon time to wait for the perfect heart.”

In January, that perfect heart arrived. Some 14 hours after Summer’s parents watched as she was wheeled off to the operating room, she returned to them with the greatest gift of all—a new heart. In late February, Summer was cleared to go home.

Saying ‘thank you’
Since then, the Ostlunds have fallen into many new routines dedicated to Summer’s ongoing health and are enjoying life together again as a family. While the return trips to the hospital are many, they are happy to see the nurses, doctors, and staff who helped to save Summer’s life.

The whole family is so thankful that grandparents Rich and Mary Ostlund decided to establish the Summer’s Wish Pediatric Cardiology Innovators Fund to support University of Minnesota Masonic Children’s Hospital. Tom and Tori also have found great happiness and purpose in raising money for Summer’s fund.

“After her transplant, it seemed like so little to just say ‘thank you,’” Tori Ostlund said.

While the long-term outlook for pediatric heart transplant recipients is continually getting brighter, there is still plenty of room for improvement.

“Hearts are a very precious resource,” Tom Ostlund said. “Any research that can lead to innovation and improved outcomes is worth striving for as a community.”