One out of every 100 children born in the U.S. suffers from congenital heart disease, a condition which takes the lives of more children each year than all forms of childhood cancer combined.

Theo James Schlicht was one of those children.

"Theo saved me," says Callie Chiroff, who lost her son to congenital heart disease in March 2018. "He gave me a clean slate. He made me a better person, gave me perspective. And ultimately, he gave me a new calling."

Following her loss, Chiroff channeled her energies into efforts to assist in boosting awareness of congenital heart disease and founding Project Bubaloo, a non-profit organization which will host its inaugural Hops for Hearts fundraising event at The Domes on Friday, February 21 beginning at 7 p.m.

Theo’s story

Like most young mothers, Chiroff was elated when she found out she was pregnant. But her dreams for an uneventful pregnancy were shattered at her 20 week ultrasound when she found out that her unborn son had a heart defect called TAPVR (Total Anomalous Pulmonary Venus Return). The rare congenital condition prevents the oxygen-rich blood that’s pumped to the lungs from taking its normal route back to the left atrium, creating a situation which prevents the baby’s body from receiving life-giving oxygen.

Meanwhile, an amniocentesis showed that Theo also suffered from a genetic disorder; although the details of the disorder weren’t clear from the test results.

"I’d been a nurse for 10 years, and I’d never heard of this," says Chiroff. "It was super scary. And, at the time, I didn’t know that we have one of the top cardiac care programs right here at Children's Wisconsin."

In the months that followed, Chiroff educated herself and prepared for the surgery which would inevitably follow Theo’s birth. But when her water broke at 32 weeks, she was faced with brand new fears.

"They held off labor as long as they could," she says. "But ultimately they determined that even though he was very small, that they needed to do the surgery or he wouldn’t survive."

Chiroff says delivery went quickly. But the moment of Theo’s birth held far more than the joy to which new mothers look forward.

"I delivered in front of probably 40 people," she says, noting that the room was filled with nurses and specialists prepared for every possible scenario. "But, when he was born, they held him up. He was blue… a deep, deep blue. I didn’t get time to bond with him. Instead, they took him away to get him stabilized for surgery."

"I remember I was in my room, probably 10 minutes after I gave birth. And it was so surreal. I realized I’d just had a baby, that he was sick, and that he could die. And I was alone. I realized I had to put my big girl pants on and do everything I could to hold it together."

An early visit to see the baby in ICU revealed more challenges.

"We walked into his room before surgery and I noticed that his right ear wasn’t fully formed; in its place, there was a small mass of tissue. And, at that moment, I realized that there was a lot more wrong than just his heart... there were multiple hurdles ahead, and I was terrified.

"My fear escalated when the surgeon met with us before surgery. He was very clear that the surgery was going to be risky, and he gave us a 50-50 chance that Theo would survive. So we sat and waited."

Hours later, Chiroff was exhausted, but she received the best news possible: her son had made it through the surgery. Hurdle one was cleared.

Following surgery, Theo remained in the hospital for six months. Chiroff says she was grateful that she lived close to Children’s so that she could visit, get sleep at home, and then easily get back to the hospital.

In the weeks that followed, she spent countless hours with her son.

"I didn’t get to hold him for nine weeks," she says. "But after that, I held him every day. And I got to know him. He was tiny, but he had these really big brown eyes. And we developed our own special way of communicating."

But the challenges kept coming.

"He was such a complex case," Chiroff recalls. "We were never able to take out his breathing tube, and he ended up needing three different surgeries. After the third, he had so much swelling that they couldn’t keep his blood pressure up, so they had to put him on life support. He got better, but then he swelled up again. Every turn we encountered something new. And at a certain point we knew he wouldn’t ever come home. It was like the nurse in me kicked in.

"The day before we withdrew care, Emily – one of the nurses who became a really dear friend – allowed us to take him outside. It was a cold day, but it was sunny. And I got to see the sun shine on his face as I held him outside. It was my moment to say goodbye."

"Letting him go was the worst thing I’d ever had to do. But it was the right thing. He came here, and he changed everything. I’m a completely different person, and I’ll be forever in his debt for that."

Project Bubaloo

Chiroff grieved for her son in the months that followed. But as she looked forward, she knew she needed to take action.

"In June of 2019, my sister Katherine and I hosted the Heart and Sole 5K," she says. "We raised almost $100,000 for the Pediatric Congenital Heart Association. And, after that, we knew we wanted to establish something for us that would really allow us to honor Theo in our own way."

HEART & SOLE 5K from Lauren Burke on Vimeo.

The result was Project Bubaloo, a non-profit organization named for the nickname Chiroff bestowed on her son in the days after his birth.

"After Theo was born, my family had done a fundraiser for us," she says. "And they raised more money than we really needed. So we put that into the fund for Project Bubaloo. We already had a fund at Children’s, so we use our funds to contribute to that. We also work to raise awareness of congenital heart disease."

Chiroff says that one of the issues with CHD is that the effects aren’t readily visible.

"Cardiac defects are the number one cause of infant mortality," she says. "Treatments are expensive, and the stress on families is so great. But these kids… you can’t see their scars. So it’s really easy to overlook or minimize the situation. So our goal is to spread community awareness while advancing the quality of care to those affected by congenital heart disease."

Project Bubaloo currently funds a quality improvement feeding project at Children's Wisconsin in their cardiac intensive care unit which makes use of cue-based feeding strategies to enhance care. The organization also funds an annual nursing research  lectureship at Children's Wisconsin.

Support Project Bubaloo

On Friday, Feb. 21 from 7 to 10 p.m., Project Bubaloo will host its first annual Hops for Hearts event at the Mitchell Park Domes, 524 S. Layton Blvd.

The event, which will be emceed by Riggs & Alley of Kiss FM, will feature small plates from Zilli Hospitality Group paired with beer from local breweries. Participating breweries include 1840 Brewing, Black Husky, Founders, Indeed, MKE Brewing, New Glarus, War Pigs and Shorts Brewing, among others. Brewery representatives will be on site to talk about their beer and visit with attendees.

The event will also feature a DJ spinning tunes, a silent auction and a variety of raffles, including Ryder Cup tickets and a Bunzel’s meat raffle.

Tickets for Hops for Hearts are $65 (including fees) and include food, five beer station tickets and a Project Bubaloo tasting glass. Raffle and additional beer tickets will be available for purchase onsite. 

Donations can also be made directly to Project Bubaloo.

Chiroff says their goal is to raise $50,000. A portion of the proceeds from the event will be donated to the Saunders family; the remainder will support the work of Project Bubaloo.