Matters of the Heart: St. Michael Mom Follows Mission to Spread CHD Awareness

St. Michael mom Jennifer Helstrom would have been a celebrity-by-accident anyway, when she delivered her daughter on the side of the road one frosty night in Isanti.

But the Helstrom family, including her son Zach and her then-husband Scott became newsmakers of a different kind when Haley was diagnosed with a congenital heart defect, and eventually underwent a complete heart transplant at the tender age of 6 months.

That drew Helstrom to a new cause. As she soon found out, about one in every 100 babies born is diagnosed with a congenital heart defect. Many are the same category as her daughter’s, which is a defect in the left side of the heart.

CHD takes more young lives than cancer, SIDS or spinal defects, which probably get more attention nationally thanks to organizations like the March of Dimes and the Children’s Miracle Network.

“I think, what we’re seeing everywhere, is a real lack of awareness,” Helstrom said from her kitchen in the Cornerstone Apartment complex in St. Michael. “So much can be solved with some early detection, but we’re seeing that moms out there don’t know to what tests they need, even if there’s a genetic disorder that might be caught early by a simple ultrasound.”

Through social media like Facebook, e-mail and even CaringBridge, Helstrom has joined a network of local mothers. They don’t have a name, but their cause is the same.

Some, like her, have children who have survived their battle against CHD. Others, like Jillian Greeno, have “little angels,” who died from their ailments, but drew their mothers and families to the cause as well.

“I had the same thing where my son had an underdeveloped heart on the left side. It couldn’t squeeze the blood through,” she said. Wyatt died at just 6 months of age.

Jolene Tesch of Shakopee lost her son at 2 ½ months.

Both are working for awareness through separate groups.

Greeno, who lives in Albertville, has created Wyatt’s Warmth. The group sews and donates leg warmers to local hospitals for infants.

Why leg warmers?

“When they’re hooked up to the machines, the only thing you can really cover is their legs,” she said. “It’s just a way to make them feel wrapped up and warm somewhere.”

Greeno also lost her brother to a heart defect.

Tesch, meanwhile, quit her job as a paralegal and joined Lasting Imprint, a state-recognized, nonprofit awareness group that focuses strictly on heart ailments. There are chapters in the Shakopee area, Plymouth and Mankato, where Tesch was when she lost her son to CHD.

“The feelings you have are so hard to grasp. There are so many questions,” she said. “It’s stressful on families. A lot of parents don’t make it after the loss of a child, and they end up separating. And even if your child makes it, there are medications and treatments after surgery that don’t allow you to just put them in daycare and go back to work, so that can be stressful as well.”

To raise awareness, all three women, and friend Chris Kunze of Buffalo, who has a 4-year-old son who survived heart surgery, have approached local communities and the state of Minnesota for proclamations to raise awareness.

The campaign has been a success. Helstrom has accepted certificates from St. Michael, Isanti and others. Kunze hit up Buffalo. Tesch has worked with city councils on the south side.

And Gov. Mark Dayton recently signed a proclamation for the group last month.

“One of the main things people can look for is blood oxygen content. It’s something they check right away, and if that seems off, it can be a big indicator,” Tesch said. “Making that a standard thing, just strapping that sensor to the baby’s finger for a few minutes, could save lives.”

Tesch and Greeno are both expecting new babies soon. Both have had preliminary testing done (thanks to what they know now), and both babies have healthy hearts.

And all four women have a support network they’ve never had before.

“We’re heart moms,” Helstrom said. “I think all of us know more about CHD than we ever imagined. But after you have this atomic bomb blow up in your world, you have to be a mom at the end of the day to that baby. You have to do what’s best for her, or him. Raising awareness about this can only help moms have all the information they need.”