Virginia Baby with Life-Threatening Heart Defect Beats the Odds at Lurie Children’s

January 22, 2019

When Mackenzie Janin of Norfolk, Virginia, was expecting her first child, she was told her child may or may not survive delivery. In-utero, the baby was diagnosed with a congenital heart defect known as tetralogy of Fallot with pulmonary atresia and multiple aortopulmonary collateral arteries (MAPCAs). In fact, the baby didn’t have any pulmonary arteries feeding her lungs.

Still, Mackenzie and her husband John were determined to find a solution. They turned to the internet to research top pediatric heart programs across the country, willing to go anywhere in the U.S. if it meant giving their unborn child a chance at life.  

All signs pointed to the multidisciplinary cardiovascular-thoracic surgery team at Lurie Children’s.

“Once we met with the collective team who talked to us about every detail, that’s when we decided to go to Lurie Children’s,” Mackenzie said.

In between visits to Chicago from Virginia, Mackenzie kept in touch via text with the cardiology program’s Dr. Kiona Allen, attending physician, and Michelle Steltzer, pediatric nurse practitioner, to ask questions. “Knowing that you’re 600 miles away but there’s someone there for you is such a comforting situation, especially when you have no idea what you’re doing.”

Scarlett’s Surgery

Once settled in Chicago, Mackenzie met with her new care team once a week. Tests confirmed that the baby had good blood flow, but it was too soon to tell whether they would be able to repair her heart in one surgery or several.

At 39 weeks, the baby, Scarlett, was induced. Her skin had a pink tint known as cyanosis as a result of a lack of oxygen in the blood. “But she was happy and she was breathing,” Mackenzie said.

Scarlett’s parents had one primary concern throughout her first few weeks of life: “We were focused on getting her to tolerate feeding so we could get her up to nine pounds, and then she could have her heart surgery.”

At three months old, Scarlett went into surgery with Dr. Joseph Forbess, Division Head, Cardiovascular Thoracic Surgery. In six hours, Dr. Forbess completed a full repair of the hole in Scarlett’s heart and brought together the disconnected pulmonary arteries, a procedure known as unifocalization.

“They got everything done. To me, that confirmed the fact that we were in the right place,” Mackenzie said.

It was the expert surgery that saved Scarlett’s life—and it was the little touches from caregivers outside of the operating room that made her parents feel safe in the process. “When we were talking with [other medical teams] and trying to find the right hospital for us, we found not everyone had the same level of compassion as the people at Lurie Children’s. At Lurie, I would have doctors say not only ‘Here are the facts,’ but also, ‘How are you feeling?’ That was such a different approach to anything we had felt before.”

One Year Later

Scarlett celebrated her first birthday in December 2018. So far, she’s exceeded every single developmental goal she was given at birth, according to Mackenzie. She returns to Lurie Children’s every few months for check-ups.  

Lurie Children’s Heart Center is the top-ranked pediatric heart center in Illinois and ranked #3 in the nation by U.S. News & World Report.