CINCINNATI -- "It's hard to see past the fear" when you first learn that your baby has a congenital heart condition, Laura Kohus said Tuesday. Her son, Henry, was born in 2015 with tetralogy of Fallot, a rare disease characterized by a set of four physical defects that prevent a newborn's heart from pumping the oxygen-rich blood it needs.
Within four days of Henry's birth at Cincinnati Children's Hospital, it was clear that he would need open heart surgery to survive.
"The raw emotion you have when you first get a diagnosis is earth-shattering," Kohus said. She was terrified, she wrote in a blog post for the hospital: First that Henry would have a health crisis after she took him home and then that his surgery wouldn't go according to plan.
But he didn't, and it did. Today, Henry is a red-cheeked 2-year-old with a thatch of blond hair and a healthy future ahead -- and children like him received an unexpected shout-out Monday night from comedian and talk show host Jimmy Kimmel, whose own son was born with tetralogy of Fallot on April 21.
In an emotional opening monologue, Kimmel described the same emotional U-turn Kohus had experienced after Henry's birth: The happiness of welcoming a new child followed by the fear of losing him just a short while later. Like Henry, newborn Billy Kimmel needed open-heart surgery; like Henry, his recovery appears to be going smoothly.
Kimmel's openness about his experience earned him overnight praise from a wide variety of sources, including Kohus. She applauded the host's courage and said hopes that having a celebrity speak so publicly about tetralogy of Fallot will bring more general awareness to congenital heart conditions.
"Awareness is important because we need research dollars and we need funding, and we need information for greater medical care," she said. "Children with congenital heart defects are living longer and longer and can expect to have full lives, and we need care for them."
That care can include more heart surgeries -- Henry will have another as a teenager -- as well as regular meetings with heart specialists to help manage a child's health and detect problems before they become life-threatening. With that care on their side, Henry, Billy and children like them will have normal life expectancies and be able to enjoy the same opportunities as other children.
Kohus said that, if she could speak to Kimmel herself, she'd advise him not to shy away from the fear involved in the earliest months of his baby's life -- the fear, she said, is part of that child's story, and it can make the time after it passes feel even more precious.
"As you move through those scary days around surgery and you come out on the other side, you realize the only thing you have to look forward to is your child's future," she said. "That's an incredible feeling."
Want to help children like Henry Kohus and Billy Kimmel? The American Heart Association accepts online donations.
