On March 16, 2017, Lauren gave birth to a baby boy named Winston, and for a few hours, everything was fine. Within 24 hours, however, Winston was brought to the NICU, where an echocardiogram of his heart confirmed it was not functioning properly. He was immediately transported to Ann & Robert H. Lurie Children’s Hospital of Chicago.
“When we got to Lurie Children’s, everybody told us, ‘We’re going to do our best, but he’s really, really sick,’” Lauren said. “But we said from the get-go, there are two options: We can sit down, or we can teach him how to fight.”
At Lurie Children’s, a cardiologist diagnosed Winston with hypoplastic left heart syndrome, a congenital heart defect that affects the heart’s blood flow. As a result, he would require three open-heart surgeries throughout childhood. He was admitted to the Regenstein Cardiac Care Unit (CCU) at Lurie Children’s, where a multidisciplinary team of doctors, nurses, surgeons, and therapists talked the family through a comprehensive road map for their young son’s procedures and overall care.
Quickly, Winston proved himself to be a fighter. At just eight days old, he underwent his first open-heart surgery, the Norwood procedure, at Lurie Children’s. The operation converts the right ventricle into the main ventricle that pumps blood to the lungs and the rest of the body. Five months later, he received the bi-directional Glenn operation, which diverts half of the blood to the lungs when circulation through the lungs needs less pressure from the ventricle. He also had a cardiac catheterization, where they ballooned his pulmonary artery and his aortic arch.
“We absolutely love the CCU,” Lauren said. “The floor nurses are amazing. The surgeons have saved my kid’s life. The doctors always check in to make sure things are going well. Advanced Practice Nurse Michelle Steltzer and Dr. Kiona Allen have treated Winston like he’s part of their family. We are so thankful we ended up at Lurie Children’s.”
Today, Winston is at home with his family, regularly following up with a cardiologist and thriving developmentally. Adhering to a “one day a time” philosophy, the Shubs continue to be amazed at their son’s progress. “He’s cruising around furniture and babbling like crazy,” she said. “He’s meeting every normal milestone. If you didn’t see his chest, you would have no clue he’s a heart baby.”
While he awaits his third open-heart surgery, his family remains optimistic. In recent decades, surgical advancements for people hypoplastic left heart syndrome have drastically improved outcomes for kids like Winston.
“We’re really hopeful that with medical research and advancements, we plan on him living a full life and having his own family,” Lauren said. “That’s our hope.”