Bret and Amy Baier greeted the birth of their first child with the excitement and anticipation of any new parents, posing for photos, spreading the good news, and staring in awe at 10 perfect fingers and 10 perfect toes.
Less than two days later, they stood silently as doctors detailed the numerous potentially fatal things that were wrong with little Paul’s heart.
Amy fainted, doctors rushing to help her.
“She was overwhelmed and she collapsed,” Bret said. “But it was at that moment that we kind of kept to our mantra, which was to not let this overwhelm us, to be positive, to think about and envision the day that Paul would come home.”
Thus began a new reality for the Baiers – he a Fox News anchor based in Washington, D.C., she a pharmaceutical representative – that would involve Paul enduring three open-heart surgeries, seven angioplasties and an unrelated stomach surgery.
But this new reality would also bring forth a new kind of love, devotion and strength. And nearly 6 years later, Paul would complete a 5k walk just 17 days after his third open-heart surgery for Children’s National Medical Center, the hospital that saved him.
That would have been unfathomable in the early days after Paul’s birth on June 29, 2007.
It was on his second day of life that a nurse noticed that Paul had turned a little pale. Up until then, all seemed normal after an uneventful pregnancy.
“The first 20 hours of birth were entirely blissful and making plans for him walking down the fairway with me,” Bret said.
Doctors at first thought Paul might have a bacterial infection. But they also called in a cardiologist to check for possible congenital heart defects. In a matter of hours, the Baiers were told that their baby would need heart surgery or could die.
Doctors described Paul’s condition like this: He had two holes in his heart; his pulmonary artery was too narrow, his aorta was pinched and his heart was essentially pumping the wrong way. His main arteries were reversed and so his blood was not getting enough oxygen.
On Paul’s 12th day of life, he was readied for open-heart surgery. Bret held his breath as he watched nurses roll his infant son away.
During the eight-hour surgery, Dr. Richard Jonas, a pediatric cardiac surgeon at Children’s National Medical Center, inserted a “homograph” – a baby aorta from an organ donor – to connect Paul’s pulmonary artery to the right ventricle.
The surgery was a success, and at 5 weeks old, Bret and Amy finally got to take their baby home.
Amy and Bret regularly stood beside the crib, eyes glued on Paul to make sure they could see his chest rise and fall.
“It took us a couple of days to stop staring at him in the crib and realize that we had been given this incredible blessing that his life was going to go forward,” said, Bret, who chronicles their experiences in a new book released this week, Special Heart: A Journey of Faith, Hope, Courage and Love.
Proceeds from the book will be donated to nonprofit pediatric heart causes. Bret hopes to raise awareness of congenital heart defects and is advocating for all newborns to be screened using a pulse oximeter test, a simple and inexpensive exam in which a device placed on the hand and foot measures oxygen saturation in the blood. The “pulse ox” test can save lives by spotting congenital heart defects very early.
The American Heart Association, parent advocates and partner organizations are advocating for more states to make pulse-ox tests mandatory for every infant before leaving a hospital. So far, more than 30 states have passed or are considering pulse-ox legislation. The AHA is hopeful that eventually this will be law in all states.
“Some of these congenital heart defects can go undiagnosed,” Bret said. “If Paul went home, he could’ve been a blue baby in a crib. We wouldn’t have known why he was having trouble breathing. We would’ve eventually taken him to the hospital, but it could’ve been too late. Some of these go undetected, and you have 40-year-old or 50-year-old seemingly healthy adults who haven’t drank and haven’t smoked dropping dead on the tennis court, and that’s from an undiagnosed heart defect.”
When Paul was finally home, the Baiers knew another operation was looming. Doctors had explained that the donated connector would not grow with Paul, meaning it would have to be replaced with a larger one. And that larger one, too, would eventually have to be replaced with an even bigger one. Paul would probably need four different-sized connectors through childhood.
The Baiers didn’t realize then that Paul would develop another condition – this one involving his stomach and unrelated to his heart – that would require surgery. At 2 months old, Paul had surgery for pyloric stenosis and spent two days in the cardiac intensive care unit.
Throughout those difficult first months, Bret and Amy drew strength from family, friends and faith.
“We prayed a lot,” Bret says, “and found that those prayers and prayers of others helped us.”
Though their relatives are scattered – Amy’s parents live in Chicago, Bret’s in Naples, Fla., and Hilton Head, S.C., — they rotated in to help out, to be with Paul and Amy when Bret returned to work.
“My mom and Amy’s mom became the grandma brigade,” Bret says. “We had a shift when one grandma would come super early in the morning and bring breakfast, and then there would be a shift change. Someone was always with us and Paul, and it enabled us to keep ourselves healthy by getting sleep and resting, knowing someone was going to be there. That was important for Amy.”
Amid the sudden shift in life, the Baiers realized it was not the time to be shy about asking for help.
“We were a couple that had a lot of things going for us, and I was on TV, and everything was cooking,” Bret said. “But when this hit us, we were crumbling inside and realized how much we needed to rely on other people and help, and not only help from other people, in our case help from upstairs.”
In his book, Bret describes the evolving challenge of explaining the surgeries and procedures to Paul, now a curious kindergartner.
“He asks a lot of questions,” he said. “We try to be as honest as we can in a 6-year-old explaining kind of way.”
While in the hospital for his most recent angioplasty, Paul asked, “Daddy, why do I have to do these heart things and other kids in my class don’t have to?”
Bret replied: “Why? Because God has a plan for you and right now, he’s just testing you and you’re passing the test with flying colors. You’re going to do amazing things in your life.”
“Essentially,” Bret said with a little chuckle, “he was holding a press conference with his classmates, taking questions from them.”
“Does it hurt?” one classmate asked.
“Yeah, it hurts a little bit,” Paul answered.
“What’s the toughest part?”
“I just don’t like the medicine.”
Then Paul lifted up his shirt and showed a scar that runs from just below his chin to below the sternum.
But the 6-inch scar was not the focus of his dad’s attention.
What his dad saw was a boy who’s the tallest in his class, loves school, plays basketball and baseball, and does karate.
“He is extremely strong, growing leaps and bounds. If we’re lucky, it’ll be eight years before his next open-heart surgery,” Bret said.