“They called and they said ‘his heart is in, and it’s beating.’”
Christy Sturm reaches up to touch her necklace, which features the state of Texas with the shape of a heart inside. Her son, Iver, was not even 5 months old when he underwent heart transplant surgery in Dallas.
Iver, now two and a half, is up from his afternoon nap and starts to climb onto the kitchen table. Christy gestures across the tablecloth—more hearts—to point to the fence outside the house. “He can climb all the way up it,” she says. “Can’t get pants on him quick enough.”
Christy and her husband didn’t initially fill the house with baby gear the way many first-time parents do. “Just because we didn’t know if we were bringing him home,” Christy said.
When Christy was pregnant, they were told Iver would likely not survive due to diagnoses of heterotaxy syndrome and hypoplastic left heart syndrome.
“We just decided let’s keep going,” Christy said. “I’m the kind of person who would have always questioned.”
Iver had his first surgery a week after he was born. But his condition worsened to the point that his doctors determined a second planned surgery would not be successful. At one point, Iver had severe heart failure. “I was there when he coded,” Christy said.
At that point, Iver was placed on the list of kids looking for donor hearts.
“You have to have a good match,” Christy says. “They look for the same features of the kiddo. They want the likelihood the heart will match and it works.”
Iver was on the list for about 50 days. His donor was a month and a half older than him, and had the same blood type. About a year after the transplant, Christy wrote to the donor’s parents via Southwest Transplant Alliance, but she hasn’t heard back.
“I never thought, before I had Iver, about donating your kid’s organs,” she said, recounting meeting someone at a charity gala whose son, an organ donor, died in a car accident. “That’s the other side.”
Less than a month after the transplant, Iver was discharged, but it still wasn’t time to come home. For three months following the transplant, the family stayed in Dallas at Ronald McDonald House. “That was one of Iver’s first homes,” Christy says. Iver would be 8 months old before he met his grandparents for the first time.
In the meantime, the Sturm family had to establish community in other ways. A group of families whose kids were awaiting transplants in Dallas around the same time became close, and Christy also sought out “heart mom” groups on Instagram.
“It’s nice to connect with other parents whose kids have had transplants, to hear, ‘I know what you’re going through, and these are the issues we have been having,’” Christy said. “We don’t have people around us who have kids with heart transplants.”
But that doesn’t mean the Missoula community hasn’t been part of Iver’s story in other ways.
Iver recently did a series of swimming lessons with Kaci Briggeman, one of three local instructors in the Infant Swimming Resource (ISR) method, which teaches toddlers a swim-float-swim technique to get to an edge.
“I thought when I met him at first he’d be small and show signs of all he’d been through, but he’s big and strong,” Kaci said. “He caught onto everything we’ve been doing really quickly.”
Initial ISR lessons last six weeks and are 10 minutes each weekday. Kaci said the one-on-one aspect of the lessons is a great fit for kids who are fighting health challenges or other obstacles. “We can really tailor each lesson to what that kid needs,” she noted. Plus, a private lesson can be safer for kids who are immunocompromised.
ISR is not the only local Missoula resource the Sturms have benefitted from. Although Iver’s surgery was in Dallas, prenatal care and much of Iver’s follow-up care is based in Missoula.
Christy said Dr. Joshua J. Sticka, a pediatric cardiologist, was phenomenal. “Iver had eight defects and he nailed every one of them in utero,” she said.
She also mentioned Dr. Lauren K. Willis, a pediatric gastroenterologist.
“We are lucky to have such good pediatric care in Missoula,” Christy said.
Montana nonprofit the Jaydn Fred Foundation also helped out the Sturms financially. “They’re an awesome organization here in Missoula,” Christy said. “They help individuals who are going through tough times.”
Christy has these words for families going through such tough times: “As hard as it is, try to realize that you have absolutely no control, and the best thing you can do is control how you respond to the situation,” she said. “And reach out to other families and know that there are other means out there for support.”