Evie’s Story: Celebrating Milestones after d-TGA Surgery

For many parents, a 20-week ultrasound is filled with excitement. But when staff stepped out of the room to discuss Samantha’s scans, that excitement started to give way to concern. 

“I just kept looking at my husband Mike, like, ‘There's something wrong,” Samantha said. 

The maternal-fetal medicine physician at Northwestern Medicine Prentice Women’s Hospital broke the news that their first baby, Evie, would be born with a rare congenital heart defect: transposition of the great arteries (d-TGA). 

“I broke down,” Samantha said. “I knew what that meant — I said, ‘Mike, she’s going to need open heart surgery.’”

In d-TGA patients, the two main arteries of the heart (the aorta and the pulmonary artery) are switched. As a result, oxygen-rich blood goes back to the lungs, and oxygen-poor blood goes to the rest of the body. An arterial switch procedure is necessary within days of birth to correct the artery positions. 

A Comprehensive Care Experience

The couple was referred next door to The Chicago Institute for Fetal Health at Ann & Robert H. Lurie Children’s Hospital of Chicago. The Chicago Institute is one of the few comprehensive, multidisciplinary fetal centers in the country. As part of Lurie Children’s Fetal Cardiology Program, the team provides collaborative care from the prenatal period into childhood.

“It's very warm and inviting — you just feel comfort,” Samantha said.

They were greeted by Robin Weddick, Fetal Cardiology Nurse Coordinator at the institute, who began to walk them through their care plan. Immediately, Samantha said they clicked.

“She was what we needed,” Samantha said. “Robin said, ‘You’ve got this. We're going to figure this out.’”

Robin paired the couple with Dr. Amy S. Lay, Associate Medical Director of the Regenstein Cardiac Care Unit. Through appointments with Dr. Lay, surgeons and the cardiac team, their fears began to dissipate.

“We want to support and provide education to our patients through every step of care; prenatally, in hospitalization, in surgery and into childhood,” Dr. Lay said.

In addition to monthly fetal appointments, Robin also took them on a tour of the Regenstein Cardiac Care Unit (CCU) to see where Evie would be recovering. Along the way, Samantha and Robin discussed the upcoming baby shower, pregnancy milestones and hopes for Evie’s future.

“It helped for me not to feel this loss of excitement,” Samantha said. “I feel like for a lot of people, you get these diagnoses and you don't want to be excited for your pregnancy anymore. But the way that everyone at Lurie Children's was able to calm us down and have a plan in place … it just helped me still enjoy my pregnancy.”

Supporting parents through every emotion of pregnancy is a core value of The Chicago Institute for Fetal Health. While Robin says it is healthy to grieve the pregnancy and birth they hoped for, she also wants patients to feel empowered to celebrate.

“If this is something that you have desired and have been waiting for, I do think that it is important to celebrate,” Robin said. “A congenital heart defect doesn’t have to change that. We try to focus on celebrating every milestone.” 

The milestones kept coming. In October 2022, Evie was born via cesarean section at Northwestern Medicine.

Evie’s Heart Journey

Evie was immediately transported to Lurie Children’s to undergo a balloon atrial septostomy (BAS). Cardiologists insert a small balloon through a cardiac catheter to enlarge the hole between the two chambers of the heart and temporarily improve oxygen levels before surgery.

On average, Lurie Children’s surgeons perform more than 450 heart surgeries annually, with one of the best survival rates for pediatric congenital heart surgery in the nation.

“Our team is proud to combine expertise to offer the highest standard of individualized care for each child,” said Dr. Sheetal Patel, Medical Director of the Fetal Cardiology Program, who worked closely with the surgical team. 

At six days old, Evie was brought to the operating room to undergo the arterial switch procedure. Over the course of almost nine hours, surgeons carefully repositioned and reconnected the aorta and pulmonary artery.

After a successful surgery, Evie underwent a three-week stay at the CCU. Samantha and Mike filled out “milestone cards” for every new achievement. 

“I can't say enough about the staff and how they really do make you feel like you're a part of their little family there,” Samantha said. 

Driving Change 

Now three years old, Evie is a bright and bubbly toddler.

“She is such a funny, sassy, smart girl,” Samantha said. “No one would know that this kid went through what she went through.” 

Each year, the family hosts the annual Golf Fore Hearts fundraiser for the Heart Center. Golf, one of Mike’s passions, was a clear way to give back. Over the last three years, they have raised roughly $40,000. 

Samantha and Mike still stay in touch with Robin. Alongside their families, they reunite each year at the fundraiser to celebrate Evie. 

“I don't know how you turn something like that into such a positive experience, but Lurie Children’s knows how to do it,” Samantha said. “Especially the Heart Center — the people that work there are meant to do what they do.” 

Learn more about Lurie Children's Heart Center here.

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