Chuck and Tiffany Palmer, of Kansas City, Missouri, were familiar with hypoplastic left heart syndrome due to their careers in healthcare. Still, knowledge of the heart defect didn’t prepare the parents to learn their own son has the condition.
“It was devastating. It was at our 20-week ultrasound. We weren’t expecting the diagnosis. No parent ever is,” Tiffany, 35, tells PEOPLE. “The scary reality of what was to come was there. We knew most babies with this diagnosis don’t survive pregnancy, and if they do they typically don’t survive much past birth.”
But Jack defied those odds, entering the world on Jan. 16.
Hypoplastic left heart syndrome is a rare congenital defect in which a part of the infant’s heart is underdeveloped. About one out of every 4,344 babies born in the U.S. each year is diagnosed with hypoplastic left heart syndrome, according to the Centers for Disease Control and Prevention.
Doctors told the parents early on that the baby would need a heart-lung transplant, and Jack underwent his first open-heart surgery at just two weeks old.
“For me being postpartum, I was probably the most emotional I’ve ever been. I cried all the time. I was an emotional mess. But we were told he wouldn’t even survive the delivery. So here we were, approximately 10 days in and Jack was, yes in NICU, but with us. We had gotten to hold him… all of those emotions played a factor in our decision to move forward with transplant.”
Jack remained at St. Louis Children’s Hospital where doctors worked to save his life — and Chuck and Tiffany were forced to make difficult decisions for the sake of their son.
“We’ve never given up hope. Our mantra the whole pregnancy and Jack’s whole life has been, ‘For Jack, not to Jack,’ ” Tiffany says. “As long as we were doing things to give him some sort of a good quality of life then we would continue to be hopeful. Continue to move forward. During my pregnancy he continued to grow and develop otherwise normally which gave us hope.”
At three weeks old, Jack underwent a second open-heart surgery. Children with the defect usually endure three of the invasive surgeries to correct the ailment. But Jack’s condition was so severe that the heart defect impacted his lungs, and he was in need of a heart-lung transplant. He also had an intact atrial septum, which makes it difficult for blood to flow through the boy’s body properly — only making the condition more difficult to treat.
On May 23, cardiologists at St. Louis Children’s Hospital’s Heart Center performed the transplant on Jack, making him the youngest person in 10 years to successfully undergo the surgery. Chuck and Tiffany say their baby boy’s health began to improve immediately.
“It was amazing! The first thing we noticed was how pink he was,” Chuck tells PEOPLE of his son’s lively complexion. “He stayed intubated for a few weeks after, but he was awake, he could interact with us. He would smile. It’s been amazing to see how quick he’s starting to pick up on things that a normal 6-month-old should be doing.”
Jack was recently discharged from the hospital, and has been living with his parents and siblings, Allison, 11, and 2-year-old Max, at a St. Louis apartment the family rented during the baby’s health journey. But the Palmers plan to head back to their Kansas City home soon with their bouncing baby boy.
“He could be angry and upset and mad all the time after what he’s been through,” Tiffany says of Jack. “But, at the end of the day, he still smiles and wants to play with you and wants to be loved. His smile makes everything worth it.”