Meadow EmmaLou Boes loves princesses. The 2-year-old is obsessed with Elsa from “Frozen.” Among her growing vocabulary, three of her top words are, “Let it go!”

“Meadow lives life at 100%,” said Sarah, Meadow’s mom. “You’d never know she was born with a life-threatening heart condition.”

In summer 2022, Sarah and her husband, Ben, were getting ready to welcome their first child. Sarah, a nurse practitioner, was 34 weeks pregnant. A joyous occasion turned stressful when a scan unexpectedly showed something was off.

The ultrasound showed a serious issue with Meadow’s heart. She was diagnosed with tetralogy of Fallot with pulmonary atresia, a congenital condition that changes the way blood flows to the lungs and through the heart. Left untreated, the condition is fatal.

“My head was exploding,” Sarah said. “Even as a nurse practitioner, it’s a lot to take in really fast, when you’re about to have a baby you thought was normal a week ago. Now we’re looking at a severe congenital heart defect, a lifetime full of surgeries.”

She and Ben met the team at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, who worked with the Boes family to come up with a plan.

“At that visit, one of the first physicians we met told us, ‘Our goal is to become one of the premier pediatric heart programs in the country, and everyone on our team is committed to making that happen,’” Ben said. “We would later learn just how true that statement was.”

Meadow was born at 39 weeks and was quickly taken to Norton Children’s Hospital’s neonatal intensive care unit. Doctors immediately started giving Meadow medication to help her heart. This bought time for Bahaaldin Alsoufi, M.D., chief of pediatric cardiothoracic surgery at Norton Children’s Heart Institute, and his team to put in a BTT shunt. The procedure was designed to improve blood flow until Meadow could grow big enough for a full repair.

“It went better than anyone could have imagined,” Sarah said. “We were in and out in less than two weeks — that is quick with this type of surgery.”

A difficult holiday

The hope was the shunt would provide the necessary source of blood flow to the lungs until Meadow was 6 to 8 months old. She’d then be big enough for open heart surgery to fix her heart and install a pulmonary valve. But Meadow’s heart couldn’t wait that long.

Around Thanksgiving, Meadow’s home oxygen monitor started intermittently giving low readings. Mildly concerned, Sarah consulted with Edward S. Kim, M.D., pediatric interventional cardiologist with Norton Children’s Heart Institute.

“Dr. Kim told us, ‘You know what? I just don’t feel good about it. Why don’t you come in just in case,’” Sarah said.

Tests showed the shunt had become less effective. Meadow needed open heart surgery, quickly. Surgery was scheduled for Dec. 5.

Not your typical tetralogy of Fallot case

“We thought, ‘We’ll be out of here by Christmas. We prepared for this,’” Sarah said.

But Meadow’s heart had a few more curveballs in store.

The surgery was successful, but Meadow developed junctional ectopic tachycardia, a type of irregular heartbeat not uncommon for patients with her heart diagnosis. That also seemed to affect her blood pressure and cardiovascular function.

The heart team called Dr. Alsoufi at 2 a.m. As it turns out, he had been up all night monitoring Meadow’s condition remotely from home and was already on his way back to the hospital.

“He was already ready to roll,” Ben said. “Even after being in surgery all day, he had kept an eye on her through the night, which we really appreciated.”

Dr. Alsoufi reopened Meadow’s chest, and her condition soon stabilized. A decision was made to leave the incision open. This meant that Meadow had to be sedated and on a ventilator.

“It was so hard because we couldn’t hold her,” Sarah said.

As Meadow’s condition improved, the chest was closed again, and she started making the necessary progress as her irregular heartbeat became under control. Sarah and Ben got to hold their daughter again. It was Christmas Eve.

“She smiled for the first time since surgery,” Sarah said. “We could see the light at the end of a tunnel.”

Since then, Meadow continues to grow and hasn’t yet needed additional surgeries.

“She was a little bit behind right after surgery, but now she literally chases us across the room,” Sarah said.

Giving back

The Boes family wants to ensure other families who need heart care have the same experience for decades to come. The family has decided to leave a $15-million legacy gift to the Norton Children’s Hospital Foundation. The funds will be used to enhance heart care, expand innovative research, and recruit and train best-in-class doctors and other specialists.

To celebrate the future gift, Norton Children’s Hospital has named part of the hospital’s second floor the “Norton Children’s Heart Institute Boes Family Congenital Heart Center, in honor of Meadow EmmaLou.”

“Because of Norton Children’s, our daughter is alive today,” Sarah said. “They’re really innovative and creative, and they’re doing things not everybody else is doing. That’s something that I want to support.”

Due to that, when Sarah brought up the possibility of making a donation, Ben said, “I can’t imagine a more worthy cause.”