M eadow EmmaLou Boes loves princesses. The 3-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 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 Norton Children’s Heart Institute team, 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 would 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.” Gratitude fuels family’s legacy gift to Norton Children’s Heart Institute
Giving back The Boes family wants to ensure other children who need heart care have the same experience for decades to come. The family is leaving 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.” When Sarah brought up the possibility of making a donation, Ben said, “I can’t imagine a more worthy cause.” –Joe Hall
PLANNED GIVING CORNER Appreciated securities
Appreciated securities are financial assets, such as stocks, bonds or mutual funds, that have increased in value since their purchase. Donating these securities can be a highly effective way to support Norton Children’s, as it allows you to avoid capital gains taxes on the appreciated value. This means that the full market value of the securities can go directly to helping children, maximizing the donation. For example, if a donor bought stock for $1,000 and its current value is $5,000, donating the stock directly to Norton Children’s would avoid the capital gains tax on the $4,000 appreciation, allowing the full $5,000 to benefit Norton Children’s. Such contributions can be more impactful than cash donations because they offer a dual benefit: You can deduct the full market value of the securities on your taxes, and Norton Children’s receives a larger donation. For the Norton Children’s Hospital Foundation, these gifts can significantly enhance our ability to fund critical programs, purchase new equipment and expand services. Donating appreciated securities allows you to support the causes near and dear to you, while making the most of your investments. To learn more, visit NortonPlannedGiving.com or call (502) 420-4299 .
Ben, Meadow and Sarah Boes
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, ‘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 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. “Even after being in surgery all day, he had kept an eye on her through the night, which we really appreciated,” Ben said. 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. As Meadow’s condition improved, the chest was closed again. 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. ❛ ❛ BECAUSE OF NORTON CHILDREN’S, OUR DAUGHTER IS ALIVE TODAY. THEY’RE DOING THINGS NOT EVERYBODY ELSE IS DOING. THAT’S SOMETHING THAT I WANT TO SUPPORT.” –Sarah Boes
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