Sully's heart: Duluth family journeys from crisis to advocacy after son is born with heart defect
By her own admission, Courtney Kile “looked like hell” when she charged into the lobby of Children's Hospitals and Clinics of Minnesota in Minneapolis on Nov. 16, 2011.
She hadn’t slept or showered in four days, Kile recalls. She was bleeding from a cut on her abdomen.
The young man at the welcome desk looked up.
“I’m from Duluth,” Kile shouted. “You guys have my baby. Where is my baby?”
It may have been an awkward start to a relationship. But Kile, a paralegal at Legal Aid Service of Northeastern Minnesota, and Children’s Hospital have developed a mutual affection. She spoke at an event for the hospital’s top officials earlier this year, and an abridged version of the talk became a blog on its website.
The reason is the baby who sparked Kile’s desperation. Sullivan “Sully” James Kile is now almost 3 years old, ahead of normal developmentally and, according to his mom, a “lady killer.”
“How is ‘thank you’ ever going to be enough for saving your child?” Kile said, in explaining her devotion to Children’s. “That kid is the reason why I breathe; the reason why I work. He’s the absolute joy of my life. And without Children’s, he wouldn’t be here.”
“You have these ideas” Four days before that desperate encounter at Children’s, Robert, now 33, and Courtney Kile, now 29, had no idea what was in store for them. They had met in 2007 and married in 2009. Both are in the legal profession; Robert is an office administrator for a local firm.
The couple wanted children, but struggled to conceive, Courtney Kile said. When she did become pregnant, it was a difficult pregnancy. She was diagnosed with preeclampsia — pregnancy-induced high blood pressure — at 37 weeks. Sully was delivered by cesarean section at St. Luke’s hospital on Nov. 14, 2011. He weighed 6 pounds and 8 ounces.
Courtney had a picture in her mind of what life would be like after that.
“You have these ideas in your head,” she said. “You’re going to give birth, and it’s going to be beautiful and you’re going to take this baby home and have this blissful maternity leave and go to work.
“But that didn’t happen at all.”
The bad news When she next saw her baby, Sully had an IV in his arm and an oxygen mask on his face. The Kiles were assured Sully had started out with low oxygen levels and just needed to “turn the corner.”
By the next morning, Courtney still hadn’t slept. She was given a sleeping pill but woke up after just an hour, certain something was wrong. She walked to the nursery to discover Sully being given an electrocardiogram. Soon, a doctor shared the bad news: It appeared something was wrong with the baby’s heart, and he needed to be transferred to Children’s Hospital.
She called to Robert, who rushed to St. Luke’s. A nurse suggested they get some pictures taken with their baby “just in case.”
The wording still stings.
“I get her sentiment, but I just wish she had said it differently,” Courtney related.
The picture shows the trauma the young parents were experiencing. Their eyes are red-rimmed; they seem to be trying to smile through their tears.
“A horrible drive” Sully first had to be taken to the neonatal intensive care unit at Essentia Health-St. Mary’s Medical Center for initial treatment. Then an ambulance took him to the Duluth International Airport. There he was loaded into a specially equipped biplane with an eight-person medical team.
Courtney wasn’t allowed to go along; she had been told she should be back in a hospital bed.
But that was out of the question, she said. The Kiles quickly packed some belongings and headed to the Twin Cities. By the time they arrived, it was early morning on the 16th.
“It was a horrible drive to Minneapolis,” Courtney said. “Horrible drive.”
About six blocks from Children’s, another vehicle cut off their car, and Courtney’s seat belt cut into one of her stitches. When Robert dropped her off by the entrance and looked for a place to park, she was bleeding.
That was the sight that confronted the young man at the welcome desk.
“He must have thought: ‘Oh, my gosh,’” said Courtney, able to smile about the experience now. “He radioed and said, ‘There’s a woman from Duluth.’ … And then, it was nice because they came back and said, ‘Yeah, we know exactly who you’re talking about.’”
“Close to 100 percent” At Children’s, Sully was diagnosed with pulmonary atresia with tetralogy of Fallot. It meant his heart’s pulmonary valve was covered with tissue and couldn’t send enough oxygenated blood to his lungs.
The condition Sully was born with is considered a congenital heart defect. Dr. Marko Vezmar, Sully’s cardiologist at Children’s, said 3 percent of the population has some sort of congenital heart defect.
Most won’t require treatment early in life. But close to half of all babies that need cardiac treatment need it within a few months, or even a few days, Vezmar said. For the youngest patients, those who haven’t finished their first week of life, the prognosis has improved dramatically.
“Those are the ones that 20 years ago, the outcomes were not so great,” he said. “And nowadays, we have survivals hitting close to 100 percent.”
“My heart was broken” In Sully’s case, he needed a replacement valve, but he was too young for it.
Instead, Dr. Frank Moga performed open-heart surgery on Sully on the 17th, placing a shunt made of Gore-Tex in the baby’s heart to channel the blood properly until valve replacement was possible.
Exactly six months after that successful surgery, Moga operated again. A child-sized donor valve was implanted in Sully’s heart. When he is 12, Sully will face another operation to get an adult-sized valve.
“It’ll be tough, but he understands,” Courtney said of the surgery nine years or so from now. “He tells people: ‘My heart was broken, and the doctors fixed it.’ “
In the meantime, Sully is a healthy, normal little boy — or perhaps better than normal, in his mom’s view. She calls Sully her hero and her best friend.
“Other parents think that their kids are perfect, but Sully really is a perfect kid,” Courtney said. “He is perfectly well-behaved. My dad always teases us and says, ‘You don’t know what it’s like to have a normal kid, one that screams and throws tantrums.’ “
Medically, Sully has done well from the start, Vezmar said.
“It’s remarkable how well he’s developing,” the cardiologist said. “You can’t really tell he had a heart defect.”
Heart to Heart With their crisis past, the Kiles have thrown their energies into helping other Minnesota parents facing similar situations. They formed a nonprofit, Project Heart to Heart, for that purpose.
Until Sully was diagnosed, the Kiles knew nothing about congenital heart defects, and they had to learn from scratch, Courtney said. They want to help fill the knowledge gap for other parents.
“We want to show other families that this is what your kids have, it’s not who they are,” she explained. “We wanted to give other parents hope.”
The Kiles credit Children’s Hospital for getting them through the traumatic start to Sully’s life. During the ordeal, they never felt rushed and never felt like their concerns weren’t important to the big-city hospital’s staff, Courtney said.
“That’s their job, but that’s my life,” she said. “That’s my best friend. I’m as happy as I am today because I have my best friend back.”
To get involved Project Heart to Heart is raising money to establish a website. More information is available by emailing Projecthearttoheart@gmail.com.
Donations may be mailed to: Project Heart to Heart, P.O. Box 7251, Duluth, MN 55807