Jillian Janik, now a vibrant, almost 4-year-old, was diagnosed with hypoplastic left heart syndrome (HLHS) while still in her mother’s womb. Jillian’s mom, Nikki, went in for a routine ultrasound when she was 23 weeks pregnant. As the parent of a son born with a congenital heart defect, Nikki underwent a more precise ultrasound to examine the heart of her baby. The ultrasound picked up a heart defect, and three days later, the Janik family learned Jillian had HLHS. “It was devastating for sure,” recalls Nikki. “It wasn’t something we expected, and it took some time to wrap our minds around it.” Over the next few months, while waiting for Jillian to arrive, the Janiks spent their time together talking to each other and enjoying their moments as a family. “I didn’t do a whole lot of in-depth research,” recalls Nikki. “I tried to focus on keeping myself and my other kids healthy during that pregnancy and going forth from there.” Jillian was born on Dec. 15, 2010, in a local hospital and then transferred to a specialized children’s hospital two days later. She has now undergone three surgeries to help her underdeveloped heart. The first surgery took place when she was just six days old, the second at five months, and the third at age 2 and a half. The Janik family first came to Mayo Clinic in June 2014 after hearing about the Mayo's work in congenital heart defects from another parent of a child with HLHS. They decided to make the trip to Rochester, Minnesota to participate in the ongoing HLHS research to further the understanding of the heart defect. “I think if people are able to make that trip to Mayo Clinic, it is absolutely worth their time,” says Nikki. After Jillian was born, her brothers were still very young, and the family soon became preoccupied with other things. The trip to Mayo Clinic was the first family trip they had all taken together, and it still brings back smiles. In addition to the family time, the trip to Mayo Clinic was an overall terrific experience, Nikki says, because of the quality and care the family received. “The phlebotomist who worked with my boys was absolutely amazing, and she had a magic finger that she was going to use to feel all of their muscles in order to find the veins and she had the magic cream that was going to make them tingly. It was absolutely amazing how they did that,” she says. Asked about advice for other parents of children with HLHS, the Janiks recommend holding on to hope. “Sometimes I felt like I had nothing left but to just hope for her," Nikki says. "There is so much uncertainty and there are so many questions you don’t know. You hand your baby off, and you don’t know if she’s going to come back. But I think the one thing that we really could do was hold on to hope." That hope is paying off, and Jillian is facing each day with the excitement and curiosity of an active, happy preschooler. She’s already insisting on being enrolled in kindergarten so she can go to school like her big brothers.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science, to diagnostic imaging to regenerative therapies.
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