A gift of hope for future babies' hearts

On Nov. 21, 2019 the Association of Fundraising Professionals of Edmonton (AFP) celebrated National Philanthropy Day, an annual event to honour outstanding philanthropic achievements in our community. For 2019, the Faculty of Medicine & Dentistry recognizes the generosity of Clara and Mary Langen, with support from their parents Andrea Klaiber-Langen, '98 Arts, '01 Law, and Dennis Langen, BSc MechE '94, '02 Law, and grandparents Isabelle and Bruce Klaiber.

Shortly after Andrea and Dennis discovered they were expecting twins, they received the news that their son Quinlan, brother to twin sister Clara, now age 10, and Mary, now eight, would be born with hypoplastic left heart syndrome (HLHS)-a rare congenital condition in which newborn babies' hearts are not fully developed on the left side. Understandably, their excitement about becoming new parents was overtaken by fear and worry for their son, who would require multiple phases of surgical intervention when he was born to give him a chance at a healthy life.

"Quinlan's diagnosis precipitated a difficult journey for him and for our family," Dennis said. "We temporarily relocated to Edmonton (from Calgary) for the twins to be born as Quinlan's first open-heart surgery could only be done at the Stollery. We spent a lot of time talking with doctors, meeting families caring for children with similar heart conditions, and encountering expertise and kindness that brought us great hope about what was possible. Children with HLHS are now living well into early adulthood, whereas in the recent past, palliative care was the only option."

Quinlan spent much of his short life at the Stollery Children's Hospital in Edmonton, where he underwent the Norwood procedure-a type of open-heart surgery that helps build stronger hearts for babies with HLHS-just 11 days after he was born. After successfully recovering from the procedure, Quinlan was able to transfer to the Children's Hospital in Calgary, before finally going home with his parents and sister. Quinlan's family and friends were devastated when, just three days later, Quinlan passed away unexpectedly at 11 weeks old.

Cherishing a memory with a gift for future scholars

Quinlan's family decided to honour his memory and to celebrate hope by creating an endowment at their alma mater. Along with Isabelle and Bruce Klaiber-grandparents to Quinlan, Clara and Mary-the Langen family honoured Quinlan and his team of caregivers with the creation of theQuinlan Patric Baxter Langen Pediatric Cardiology Trainee Award.

As Alberta residents and proud University of Alberta alumni, Andrea says it is important to contribute to excellence close to home.

"We want to encourage talent to continue to come to Edmonton, since the Mazankowski and Stollery are among the key western centres where pediatric open-heart surgery is done-so that the advances in care can continue to develop, right in Alberta. Our hope is that further strides may be made in the diagnosis and treatment of HLHS and other congenital heart defects, so that all children like Quinlan and families like ours may experience life's joy and journey together."

Prior to having Quinlan, Andrea says she and Dennis had no idea Edmonton is a centre of excellence in pediatric cardiology. "But we feel a strong sense of pride in the fact that the U of A is able to do this kind of work."

U of A pediatric cardiologists treat the second-highest number of pediatric surgical cardiac cases in Canada at the Stollery Children's Hospital. In an average year, the Stollery Children's Hospital sees approximately 7,000 children and adults with congenital heart problems, performs 15 to 20 heart transplants, and provides ongoing care for 100 pediatric heart transplant recipients.

With "Quinlan's award," the Klaiber and Langen families are advancing the expertise of health professionals trained, and the quality of care provided to the families affected, at the U of A's internationally recognized training facilities.

Quinlan's sisters lead the way forward

Clara and Mary have been involved in the award every step of the way. Alongside their parents and grandparents, the sisters even signed the original documents establishing Quinlan's award.

"It was important to us that Clara participate right from the very beginning, as did Mary after she was born," Andrea said. "We wanted to show our children the impact that they can have in the world, and to allow them to feel included and take ownership over Quinlan's award."

Every year in June, the Klaiber and Langen families attend the Department of Pediatrics annual ceremony for trainees to present Quinlan's award. In 2019, Clara decided she wanted to be the one to deliver a speech about Quinlan and the award to the auditorium filled with trainees, professors, families and donors.

"Quinlan's award is important because it will help people like us have their brother or sister continue to be part of their family," Clara said. "Trainees have a new perspective and may be able to think of new ideas that have not been thought of before, and Quinlan's award can help those ideas be explored."

Because of the role Quinlan has played in their life story, giving to others has become a very important part of Clara and Mary's young lives. For a number of years, they have asked for cash gifts for their birthday so they can donate a portion to Quinlan's award or to other charities. Clara and Mary have influenced their peers, some of whom have followed their lead and make donations of their own, making Dennis and Andrea especially proud of their daughters' leadership. Their hope is that their daughters, who are growing up being involved with philanthropy, will continue to focus on giving to others and connecting people to the benefits of doing so.

"Quinlan was my big brother, and some people say that big brothers are a problem. But I know that Quinlan would have been a good big brother. So I donate most of my birthday money to Quinlan's award to help kids to grow up and be the best they can be," said Mary.

"You may not have encountered or be driven by a personal event such as ours," Dennis concludes, "but your donation will have an impact on people's lives well into the future. You may not see it, you may not feel it, but it is so important and the effect is real. We hope people can be inspired by our story and our efforts. "

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