Carter’s Story: Energetic Childhood Powered by Cardiology ‘Dream Team’
At six years old, Carter has boundless energy, curiosity and imagination. He loves going to school – and his parents find that the more he learns, the more gusto he has.
“He’s a straight shooter,” Carter’s mom, Shuntae, said with a laugh. “Whatever he says, that’s what it is.”
But there was a time when certainty was a rare commodity for Carter and his family. 20 weeks into her pregnancy, Shuntae learned that the baby had an abnormal heartbeat. Further testing revealed a combination of congenital heart defects known as tetralogy of Fallot (TOF).
Babies with TOF are born with a large hole in the heart, as well as a narrowing near the pulmonary valve that limits blood flow from the heart to the lungs. Together, these abnormalities severely limit the body’s ability to produce oxygenated blood, creating the potential for life-threatening implications.
Six days after Carter was born, he underwent his first heart surgery to receive a shunt, which helped increase blood flow to the lungs. He spent his first several months carefully monitored at home with his family before needing complete heart surgery to enable the growth of his heart, lungs and blood vessels.
Post-surgery, his health remained fragile, and his family stayed vigilant. In January 2020, Shuntae began to worry when she noticed Carter walking with a limp. At the Heart Center, the team found that Carter was suffering from endocarditis, or inflammation of the tissue cells that line the heart’s inner surface. The inflammation was caused by an infection from a cut on his finger.
“He was extremely sick,” Shuntae said. “We had so many questions. Was he even stable enough to be treated?”
Carter spent over a month in the Regenstein Cardiac Care Unit on cardiac infusions and strong antibiotics to try and clear his infection. He developed renal failure and for nearly two weeks, he had to be supported on a ventilator. Ultimately, he needed three major cardiac operations to remove infected tissue and artificial material, and to repair his damaged heart.
Throughout this critical time, his family remained close by at his bedside. The cardiac team not only cared for Carter’s heart, but provided holistic support through developmental therapies, school services, mental health support, and Child Life services for Carter and his older sister. While he worked through intensive rehabilitation to learn how to walk again, music therapy played a key role in keeping his spirits afloat.
Over the last several years, Carter’s health has stabilized and he has remained out of the operating room. For his health, his family credits the expertise and compassion of the Heart Center team.
“Dr. Kiona Allen has always had that special hand,” Shuntae said. “She has been there for us at every point in Carter’s journey. It made a huge difference in his trajectory.”
“Michelle Steltzer is like a sister to me, and we are so grateful for Dr. Osama’s expertise. Add in Dr. Johnson, Dr. McBride, Dr. Chaouki, and Dr. Monge, and that is our dream team.”
About Our Heart Center
The Heart Center at Lurie Children’s, ranked 9th in the nation for child cardiology and heart surgery by U.S.News & World Report, brings the spectrum of cardiac specialists together to care for patients with the most complex and serious heart conditions throughout their lifespans — from before birth, through childhood and into adulthood. Learn more.
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