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Rare heart defect inspires gathering that offers inspiration

September 11, 2018
Michelle Waletzko mug
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Waletzko

Michelle Waletzko said it was “a punch in the gut” when she was told her unborn child had a rare heart defect.

“You hear the words ‘surgery’ and ‘death,’ but you don’t hear the rest of it,” the Kasson mother of two said of the news that her son had hypoplastic left heart syndrome.

While 1 in 100 children — or approximately 40,000 a year — are born with some form of a congenital heart defect, only 1,000 of those have HLHS, which leaves the left side of a child’s heart severely underdeveloped.

While Waletzko was reeling three years ago, she said she’s found hope in people like Gabrielle Wanek, who is 23 and thriving after being born with the defect.

“It’s pretty awesome,” Waletzko said after appearing in a panel Saturday with Wanek, during a one-day gatherings of families, patients and researchers to discuss hypoplastic left heart syndrome.

Wanek’s parents established the the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome to support research at the Mayo Clinic, as well as host gatherings like Saturday’s, which drew families from as far away as Winnipeg and Florida.

Dr. Timothy Nelson, director of the program at Mayo Clinic, said the connections are crucial for the ongoing efforts.

“This is an inspiration for all of us,” he said of the event that brings patients, their families and researchers together.

“Everybody thinks the other person is the hero today,” he said after a morning of presentations to a crowd of approximately 200 in Mayo Clinic’s Gonda Building.

Nelson said research is showing promise in efforts to strengthen young hearts using patients’ own stem cells, which are obtained at birth.

Treatment for hypoplastic left heart syndrome typically involves a three-stage surgery to reroute blood flow in the heart, and stems cells are showing promise for strengthening and possibly building new heart muscle during the process, Nelson said.

“Our mission is to make the right heart bigger, better and stronger,” he said.

Promise was also found Saturday in sharing with those who continue to struggle with the traditional treatment.

Waletzko’s son, Isaac, is on track for his final of the three surgeries, which started before he was even born. His first surgery occurred 26 weeks into Waletzko’s pregnancy, and seven weeks after an ultrasound revealed the heart defect.

However, the need for a third operation doesn’t show in the active toddler.

“He’s a very curious little boy,” Waletzko said of her son, who she hopes can inspire others.

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