Daughter’s Diagnosis Gives Mom a Life-Changing Mission

When their daughter was born with congenital heart defects, Megan and Brent Ustby were thrust into a scary new world of medical terms and procedures. They were comforted, Megan says, by meeting families who were going through the same things. Now, Megan is using her own experiences as parent to help families like hers.

When their daughter was born with congenital heart defects, Megan and Brent Ustby were comforted by families going through the same thing. Now, Megan is using her experiences to help others.

Marbree Ustby entered the world on Easter Sunday, "healthy, happy and doing everything she was supposed to," her mom, Megan Ustby, tells us. "She screamed and cried when she was born, and slept well and nursed right away." That all changed just a few days later.

"She stopped nursing on Wednesday night," Megan says. The next morning, there was blood in Marbree's diaper. Megan took her to the emergency department at Mayo Clinic Health System in La Crosse, where she received the news that Marbree's body was shutting down.

"They didn't know what was going on right away, only that her organs were failing," Megan says. Soon, a team of neonatal intensive care specialists arrived to stabilize little Marbree and transfer her by air ambulance to Mayo Clinic's Rochester campus. By 9 p.m., Megan and her husband, Brent, would learn what was behind their daughter's difficulties. Marbree had several heart defects, including coarctation of the aorta, bicuspid aortic valve and atrial septal defect. They were preventing blood from flowing through her body the way it should.

"She needed surgery, but because her organs were failing, it was too risky to do surgery right away," Megan says. When Marbree's health stabilized nearly a week later, Mayo cardiothoracic surgeon Sameh Said, M.D., M.B., B.Ch., repaired the coarctation, opening Marbree's narrowed aorta.

Two weeks later, the Ustbys were able to take their daughter home. But they weren't out of the woods yet. A month after that, pediatrician Jennifer Brumm, M.D., noticed that Marbree's blood pressure was low. Tests revealed her aorta had narrowed again and that she would need a second surgery.

"It was traumatic," Megan says of Marbree's first few months of life. "We were so scared." But in the months since, that fear has diminished, as Marbree has grown and thrived. "She's crawling and talking and tries to be louder than her brother," Megan tells us. "It's incredible to see where she is now compared to where she was."

Megan now is using that hard-earned perspective to help other families whose children are born with congenital heart defects. She's selling T-shirts to raise money to support Dr. Said and his research team, who are working to improve surgical outcomes for patients like Marbree. And she's started a Wisconsin chapter of Lasting Imprint, a nonprofit that provides education, support and research funding for congenital heart disease. The group will host its first event at the Children's Museum of La Crosse during Congenital Heart Disease Awareness week in February.

"When we were in the hospital with Marbree, I got to know other families going through the same thing," Megan says. "It's so helpful to have a support system of people who know what you're going through." For Megan, that support system also includes Dr. Said, Dr. Brumm and the many, many others who have cared for Marbree. "We got incredibly lucky to get the team we did," she says. "We couldn't have asked for anything better."

To learn more about Lasting Imprint, visit the group's Facebook page or email Megan at heartmama0429@gmail.com. Then leave your imprint below before using the handy social media tools atop this page to share this story with others.