Fixing a tiny heart

Fiona Linn, left, with her daughters Nina and Zoe, and husband, Austin Chrzanowski.

When Fiona Linn came to Michigan Medicine for a prenatal ultrasound last year, she expected everything to be routine. The news she received that day, however, was anything but.

“The technician noted an abnormality and immediately sent us for a heart scan,” Fiona said.

The test identified a common congenital heart defect in Fiona’s daughter, Nina, called tetralogy of Fallot. The condition features four problems, with the most severe being a hole in the heart and an obstruction of the opening between the heart and lungs. There is also an overly thickened muscle over the lower right chamber and the aorta lies over the hole in the lower chambers.

“If left untreated, tetralogy could eventually be fatal to a young child,” said Richard Ohye, M.D., Nina’s surgeon in the Congenital Heart Center. That’s why the most critical issues are repaired surgically early in a patient’s life.

“Just 22 weeks into my pregnancy, we knew my daughter would need open-heart surgery by the time she was four months old,” Fiona said. “That’s pretty jarring.”

Medical advancements have led to lofty survival rates among children with congenital heart defects — upwards of 97 percent. However, according to Ohye, “Any open-heart surgery for a child is a traumatic event and can lead to complications. Nothing can be taken for granted in those situations.”

‘Nina was in good hands’

Fiona is intimately familiar with Michigan Medicine, working for the past five years as a project manager in UH/CVC hospital operations.

“Because I work at the hospital, I know first-hand how wonderful our teams are, including those in the Congenital Heart Center,” Fiona said. “And while it took a little longer for my husband to get comfortable, we could certainly see that Nina was in good hands from the moment she was diagnosed.”

The couple met with physicians, nurses and technicians throughout the duration of Fiona’s pregnancy, ensuring no further issues were found.

Fiona gave birth on Aug. 18 and the cardiac team was on hand immediately after delivery to better understand the severity of her defect and determine the best treatment plan.

“Once she was born, cardiologists had the opportunity to see things a bit more clearly,” Fiona said.

Small things make a big difference

Nina’s surgery occurred successfully on Dec. 20, but that meant the family would be spending the holidays in the hospital.

“For the first two nights after her procedure, she was in the cardiothoracic ICU,” Fiona said. “The nurses and practitioners made sure she was comfortable at all times and, even though I wasn’t able to hold her, they allowed me to get as close to Nina as possible to comfort her — and have her comfort me. They never took away our chance to bond.”

By the third day after surgery, Nina’s health was improving and she was moved to a room on 11 West in Mott, the inpatient portion of the Congenital Heart Center.

The family spent the rest of their stay in the unit, but team members ensured that everyone was taken care of, even Nina’s big sister Zoe, who is 3½.  Child life specialists made sure that she had games to play and books to read while visiting her little sister.

“It was the holidays, and staff members brought around donated toys for us to give to our children as gifts,” Fiona said. “It was a really nice touch that gave our family — and the families around us — a chance to take our minds off our baby’s health for a few minutes.”

Nina was released exactly one week after her surgery and has received positive health reports since. While her procedure is considered “one-and-done,” Fiona said her daughter — like most children born with a congenital heart defect — will undergo an annual check-up.

“We will keep an eye on her throughout her lifetime,” Ohye said. “We’ll make sure no complications pop up so she can have the same quality of life as anyone else.”

Fiona and her family have finally had a chance to reflect on the past year.

“After going through what we’ve gone through, it’s easy to see that the employees in the organization focus on doing everything they can for families,” Fiona said. “Even the smallest details can make a huge difference.”