When Jessica was 20 weeks pregnant, she and her family learned that their son, Cohen, had a complex heart condition. Doctors suspected dextrocardia and hypoplastic right heart syndrome, along with pulmonary atresia and tricuspid atresia. Early on, there was little hope that he would thrive. But as the pregnancy progressed, something shifted—by seven months, his care team grew more confident that this little boy was ready to fight for his place in the world.

Cohen arrived just shy of 39 weeks, weighing an impressive 8 pounds 5 ounces—one of the biggest babies in the NICU. After birth, doctors confirmed heterotaxy with asplenia, along with several related conditions, including dextrocardia, malrotation of the intestines, a midline liver, and an annular pancreas. His patent ductus arteriosus (PDA) was kept open to sustain him until he could undergo his first open-heart surgery at just seven days old.

At one week old, Cohen had his first of three major surgeries—a BT shunt. At three weeks, he underwent another surgery to place a G-tube and perform a Ladd procedure. His family brought him home at 30 days old with CHAMP monitoring and a long road ahead.

At six months, Cohen underwent his second open-heart surgery, the Glenn, and was discharged just five days post-op. His early development showed delays in gross motor skills, and he didn’t walk until nearly age two. Instead, he scooted everywhere, determined to move in his own way. With support from Children’s Mercy occupational therapy and Missouri First Steps for physical and occupational therapy, he slowly gained strength and confidence.

After turning three, Cohen started preschool—qualified solely because of his medical needs and ongoing therapy support. Around age three and a half, he had his G-tube removed. At four and a half, he bravely faced his third open-heart surgery, the Fontan, and once again surprised everyone by going home only five days later.

By age five, Cohen no longer needed an IEP or physical therapy services. He started kindergarten that fall, ready to take on the world.

Today, Cohen is in first grade and thriving. He has been diagnosed with ADHD, predominantly inattentive type, along with dysgraphia and some fine motor challenges. Despite falling around the first percentile for height and weight, endocrinology continues to monitor his growth—early tests raised concerns, but deeper testing showed normal results. His care team continues to watch for whether he may need growth hormone support.

Through every challenge, every surgery, every milestone, Cohen has shown fierce resilience. He has defied the odds from the very beginning—and continues to grow, learn, and shine in his own remarkable way.