Mended Little Hearts provides support for families of children with heart conditions

Mended Little Hearts provides support for families of children with heart conditions

There’s no roadmap after finding out a child has a serious health condition, but a statewide group is helping families with children who have congenital heart disease find their way.

Like other youngsters, Adair Freund loves to explore outdoors – especially as the weather warms up.

“She’s a happy and vibrant little three-and-a-half-year old,” her dad, Ryan Freund, said.

“That’s probably one of her favorite things to do, explore,” said her mother Melissa.

Many keep track of life’s memories by the changing seasons, or milestones such as birthdays, but for parents like Ryan and Melissa, a different kind of anniversary sticks out.

“At 11 days old she had her first open heart surgery,” Ryan said. “She had her second open heart surgery one day before her first birthday, and then she had her third open heart surgery two weeks after her second birthday.”

It’s easy to get stuck in the weeds navigating congenital heart disease.

“It’s not at all what you expect,” Melissa said. “It was not figuring out the nursery, it was figuring out what we need for the hospital.”

Ryan and Melissa have seen Adair go into cardiac arrest.

“There were times you’d think about it and couldn’t help but start crying,” Ryan said.

It’s something that’s unrelatable for most parents and unimaginable for all – even those who know their children have a heart defect.

“She also experienced cardiac arrest about 48 hours after surgery,” Becky Ketarkus said about her 7-year-old daughter, Tess. “Your life has changed in that moment.”

Like Ryan and Melissa, Becky marks Tess’s life in surgeries and doctors’ visits.

“There’s the one-year anniversary, two-year anniversary,” she said. “You always remember the date and time.”

When some doctors said it may be the end of the road for Tess, the statewide network Mended Little Hearts gave Becky answers to keep them moving forward.

“We had to search the country for a hospital one step at a time, one foot in front of the other,” she said.

“You’re not alone,” Ryan said.

Ryan is a coordinator for Mended Little Heart’s Wisconsin chapter. They offer meetings and “bravery bags,” which have comfort items for patients and toys for children.

Much of the support, however, is found online in a Facebook group, so parents like Ryan and Melissa in the Milwaukee area and Becky in Madison can swap stories and advice without ever meeting in person.

“If I hadn’t had those parents to say, try here, try here, try here, I don’t know she would be here right now,” Becky said.

“It’s comforting to have other people around you that want to support you,” Melissa said.

Casts and surgeries have kept Adair from experiencing spring and playing in the flowers before, but this year, with some help from Mended Little Hearts along the way, she and her family are able to stop and smell the roses.

“This is the first time she’s done anything like this,” Ryan said. “It’s just so wonderful to see her experiencing life.”

Those interested in the online group can search Mended Little Hearts of Wisconsin on Facebook.

The group’s national website can be found here.