Special Heart: A Journey of Faith, Hope, Courage and Love

by Bret Baier

  “Yeah. I have wires and a little machine in there in case my heart doesn’t work the right way,” he replied.

  “Wow! You are a robot,” Paul excitedly shouted.

  After a little more discussion about the similarities in their chest scars, the man told Paul, “Your scar looks great!”

  “Your scar looks great, too!” Paul replied.

  Then Amy added: “Chicks dig scars.”

  I don’t think the “chicks dig scars” comment had much of an effect on six-year-old Paul one way or the other, but his new scar-bearing friend seemed to enjoy it very much.

  Although it was a fairly tense time for the family, Amy and I tried our best to keep things light as we got closer to September 19. The original date for the surgery was the 18th, but we were informed that citizen Dr. Richard Jonas had received a court notice saying he needed to report for jury duty that day. I had no idea what we would do if Dr. Jonas got selected for a trial, but as I was already so up to my eyeballs worrying about things I had little or no control over, I decided there was no more room on my worry list for even one more item. In fact, looking on the bright side, we realized the nineteenth happened to be Paul Hills’s birthday. We decided to take the date change as a good sign and move on.

  Whether the surgery was on the eighteenth or the nineteenth, Amy and I weren’t particularly thrilled that Paul would need to be pulled out of school for a couple of weeks after having just gotten there and met all his classmates for the first time. But with flu season approaching, the doctors wanted to perform the operation sooner rather than later. Fighting off germs and infection is critical when dealing with open-heart patients. And for children and adults, picking up a bacterial infection can be fatal to those undergoing highly invasive surgeries. It was a balancing act, because if we waited till the spring, there was a possibility the homograph might not last, not to mention the fact that Paul would continue having chest pains and breathing issues throughout the fall and winter months.

  Even though Amy and I were complete basket cases and constantly second-guessing all the decisions we made about the timing of the surgery, Paul seemed to be pretty much taking everything in stride. Knowing he was having difficulty keeping up with the other kids, one day out of the blue Paul told me he was looking forward to being able to go to sleep then wake up and have his heart all fixed.

  Another day he told me another reason he wanted his operation was because he would receive a lot of attention from people, get several gifts, then when he got home from the hospital he would be able to run faster, go swimming, and be able to jump on the trampoline as long as Daniel. His chest might hurt a little bit, he said, but that was okay with him if it meant he would get better.

  Wow! Where did this kid come from—really?

  No doubt about it. Paul Francis Baier, aka Paulie, had definitely earned the right to have his “ie” retired and hoisted up into the rafters at the top of any arena in America during his induction ceremony into the Little Boy Hall of Fame.

  * * *

  It was a tough couple of weeks in Washington. Everyone was on edge for one reason or another.

  The House of Representatives was working on a short-term spending plan to keep the government from running out of money. But the bill had a controversial provision in it that would defund President Obama’s signature health care plan, also known as Obamacare. So from one end of Pennsylvania Avenue to the other, the town was completely tied up in knots. It really seemed as if both sides were ready to take this gigantic game of fiscal chicken all the way to the brink this time and let the government shut down. The financial markets were nervous about the standoff, and there was renewed talk about America’s tenuous credit rating and what would happen if the government closed for business and defaulted on its obligations.

  Along with the political intrigue of the possible shutdown, Monday, September 16, brought horrific news to the entire D.C. area when a deranged shooter murdered twelve people in a senseless act of violence at Washington’s Navy Yard. The images of grieving family members trying to deal with their loss just broke your heart as you imagined what they must be going through as they tried to make sense of it all. There was, of course, no sense to be made of it. Being paid to report the news, my job is to get the facts out there and keep my personal emotions out of it, but sometimes, I have to admit, that is extremely difficult to do, especially if there are children involved.

  Despite the sadness and craziness of the week, Amy and I did our best to maintain as much normalcy as we could as the hours clicked down to Paul’s surgery. My usual postwork routine was to try to get home as soon as I could after Special Report each night so I could help get the boys to bed. Racing out of the studio after signing off the air each night, I could usually be home in time for toothbrushing, reading one book, bedtime prayers, and lying down with Paul as he fell asleep.

  Just like I used to do with my Catholic high school uniform at the end of the school day back in the suburbs of Atlanta, each night when I got home I would typically race in the door, take off my suit jacket, rip off my tie, kick off my shoes, and race upstairs to be with the boys. Paul seemed to enjoy my postwork ritual as much as I did, and one night, after complaining that his feet were hurting, he spontaneously added a new component to the mix—rubbing his feet.

  Now the end-of-the-day activities included some serious foot rubbing before Paul could get to sleep. While he talked nonstop about his day at school, I found that after just a few minutes of rubbing his feet, Paul would be out cold. It got to the point where as soon as I would walk in his room he would immediately ask, “Daddy, can you rub my feet tonight?”

  I remember thinking this might have to do with all the therapuetic touching Amy did when Paul was in the hospital for his first operation; all the times she held him through the wires and the tubes—rubbing his hands and feet as she sat with him in the chair next to his medical bassinet. I thought, “Now it’s my turn!”

  Some nights when it was impossible to make it home before bedtime, Amy would tell Paul that she could perform the foot rubbing until Daddy got there. I got a big kick when Amy reported to me one night that Paul matter-of-factly informed her, “You can rub my feet, but Daddy’s really the best at it.”

  Before the foot rubbing would begin, bedtime prayers would normally be said, with us remembering each member of our family, then all the other people Paul’s six-year-old mind decided needed the Lord’s help. We’d thank God for all the blessings he had given us, and then we would ask for a peaceful and restful night of sleep. Not wanting to focus too much on the upcoming surgery, I would try to steer the prayers in the direction of asking God to keep us all healthy. Before long, Paul could see through that and started adding, “And Lord, please help the doctors fix my heart so I can run faster and jump higher.” Eyes closed in the darkness of Paul’s bedroom, I would smile as I said, “Amen.”

  With Paul’s surgery set for early Thursday morning, I debated whether to take off work Wednesday. After talking to Amy, we decided it would be better for me to work since Paul would be busy with presurgery appointments and friends stopping by throughout the afternoon to visit. I compromised and spent the morning and part of the early afternoon at Children’s while Paul had his blood drawn and X-rays taken. On the night before the surgery, my plan was to slip out of the bureau the second we were done with Special Report.

  Late in the afternoon we learned the network had secured an exclusive interview with Syrian president Bashar al-Assad on the topic of chemical weapons and his country’s ongoing civil war. That interview, fed in from Damascus very late in the day, quickly became the basis for an extended, two-hour edition of that evening’s Special Report. Instead of being able to leave right at 7:00 p.m. as planned, I had to stay in the bureau well into the evening. So much for my plans to skip out early that night. The days leading up to Paul’s third open-heart operation were extremely busy to say the least.

  Paul was scheduled to go into Children’s early Thursday mor
ning, and given how social media communication had changed from the days of Paul’s first open-heart surgery five years before, during the week I sent out several tweets about Paul’s operation. Those short messages instantly generated hundreds of prayers and good wishes for our family, which was touching, inspiring, and completely humbling.

  I still intended to send out a longer, old-fashioned e-mail to our family and friends so I could give all our prayer warriors more details about what was going on. But because I had been so backed up with the news of the week, it took me forever to get around to it. Eventually I wrote the e-mail as I sat in the hospital waiting room just as Paul’s operation was beginning. After five years, I felt like one of the Blues Brothers trying to get the band back together for a big comeback concert just as the stage lights were coming up.

  September 19, 2013, 12:07 PM, Thursday

  Subject: It’s been a while

  Family and friends,

  It’s been a while since I have written one of these e-mails. Some of you already know today is Paulie’s third open-heart surgery—his last was five and a half years ago. Since that time, he’s added a brother, Daniel, who is his best buddy and playmate. And Paulie, who now tells all of his friends he likes to be called Paul, has become a real character.

  Last night we laughed hysterically as we had a dance party in his bedroom before bedtime. But the real belly laughing happened when he blurted out, “Daddy, you have a big booty!” He’s right, of course, and he could have said whatever he wanted to as far as I was concerned. This morning he gave his brother Daniel a kiss and a hug before leaving for the hospital. Daniel, who is usually talkative, too, was a little quiet and looked a little sad. At three, he knows what’s going on with his big brother.

  On vacation in Florida a few weeks ago, Daniel took a plastic stethoscope and gave Paul a pretend checkup. He said, “Paulie, I know your heart is broken, but I will fix your heart right here so you don’t have to go to surgery, okay?” Daniel proceeded to give Paul a thorough exam.

  Just before I started writing this e-mail, the pager I’m wearing beeped: “Surgical update: Paul was placed on bypass at 10:31 a.m. He is doing fine.” That means we are about three hours away from seeing Paul in the Cardiac Intensive Care Unit.

  Dr. Richard Jonas, one of the best pediatric heart surgeons in the world, is replacing what’s called a conduit, a donated aorta that connects his right ventricle with his pulmonary artery. Long story short, it doesn’t grow with Paul and he is growing like a weed—100th percentile in height, 70th percentile in weight (the stats pediatricians use to compare kids to the average). So it’s time to get a new one. It’s the third family that has lost a loved one and donated the organs so Paul could live. Think about that for a minute.

  Paul has been a real trouper this surgery. He’s embraced it. We talked to his kindergarten class the other day about what this surgery is all about and how long Paul will be gone. We were really fortunate that his cardiologist, Dr. Deneen Heath, came in as well to explain things to the kids. By the end of our little talk, Paul was taking questions from his classmates.

  Q: “Do you have to get shots?”

  A: “Yes, and I cry a little, but not much.”

  Q: “Do you have to take medicine?”

  A: “Yeah, and it’s pretty yucky, but I take it.”

  Perhaps sensing the discussion about taking medicine might have been a bit of a downer for his five- to six-year-old audience, Paul decided to switch it up a little when he said to the class: “So, do you want to see my scar?” At which point, he lifted up his shirt and showed the entire class his scars from the first two surgeries.

  Then he said, “Last question.”

  Paul was essentially running his own press conference! One little girl raised her hand. Paul called on her and she asked, “When can we eat the donuts that your mom brought in for us?”

  That question was a big hit and pretty much ended the news conference.

  The pager just beeped again: “Surgical Update. Paulie is still on bypass and doing fine. Please be around the waiting room in one hour for another update.”

  So far, so good.

  This morning Paul was consumed with the movie he was watching on an iPad—the animated flick Hero. With headphones on, he was oblivious to a lot going on, which was good. The anesthesiologist gave him some medicine to drink (which Paul accurately described to his classmates as “pretty yucky”).

  Eventually, we coaxed him to drink it, in what I’m sure sounded to the other presurgical bays as a fraternity party where members are trying to get a pledge to drink a shot of something. But the promise of a new bike as a reward when he’s all done with this probably doesn’t pop up in too many fraternity parties.

  The medicine eased him. Then I held Paul on my lap with my arms around him, and he sucked in the anesthesia. He slowly went to sleep. I laid him on the table, we gave him a kiss, and then we walked out. Amy and I shared a few tears, took some deep breaths, and came here to the waiting room, waiting anxiously for the next beep or buzz for some update.

  The last time I wrote an e-mail like this was for Paul’s seventh angioplasty in December. During the overnight stay after that, I was sleeping on the couch next to Paul’s bed. He woke up in the middle of the night, and out of the blue he asked me, “Daddy, why do I have to do all of these things? All of these heart things—and all of my friends in school don’t have to do it?”

  That question hung there in the air for a little while…and I scrambled to think.

  I said, “Buddy, because God has a plan for you. You are going to do amazing things in your life. He’s got big plans for you. But he wants to test you first to see if you’re up for it. And you’re passing the test. You’re doing great!” He just looked at me and said, “Okay, Daddy. I love you” and then turned over and went back to bed.

  I do a lot of ad-libbing on air, but that was one of my better efforts. Now, as we wait for the next beep, we know God DOES have a plan and we’re trusting that Paul, the fighter, is fitting right into it.

  Thank you all for your prayers and good thoughts.

  Bret and Amy

  * * *

  Based on all the tweets and e-mails coming my way throughout Paul’s surgery, the prayers and good thoughts from all over the country seemed to have the effect we’d hoped for. After several hours Paul emerged from his third open-heart surgery like a champ and was resting in his room in the Cardiac Intensive Care Unit. Once again Paul was receiving some pretty amazing care from the doctors and nurses looking after him in the CICU.

  One of the things that has really helped us through our experiences at Children’s over the past six years has been the fact that so many of the same doctors and nurses tending to Paul have been there the entire time. That kind of continuity of care is unique and has been a total blessing in our lives.

  Dr. Richard Jonas has performed all of Paul’s heart surgeries going back to July 2007. Dr. Michael Slack has done six of Paul’s seven angioplasties. Dr. Gerard Martin, the cardiologist who first showed up at Sibley to check on Paul when he was one day old, was still the head of Children’s cardiology department. Dr. Kurt Newman, who performed the surgery on Paul’s stomach in the summer of 2007, was now CEO of the entire hospital and has been a tremendous help to Amy and me over the years. Dr. Deneen Heath has been Paulie’s cardiologist from almost the beginning of our time at Children’s. In fact, on that first day at Sibley when Dr. Martin diagnosed Paul, the first person he called at Children’s to get ready for Paul’s transfer was the cardiologist on call that day, Dr. Heath.

  Those five, and any number of other doctors and nurses at Children’s, have been with us the entire journey, all vital and essential parts of Team Baier. That we know them personally and they are all plugged in to the intricacies and nuances of Paul’s heart always gives us an extra level of comfort whenever we are at Children’s.

  Not only do they have institutional knowledge about Paul’s case, they are, without a doubt, all to
ps in their field. They are also wonderful people to deal with and have sincere compassion, sensitivity, and affection for our son, which is icing on the cake.

  By the time of Paul’s third surgery, Amy and I had started helping Children’s with a few charitable events now and then. The folks at Children’s even asked me to MC the hospital’s annual fund-raising gala a few times, which I was thrilled to do. Along with Amy’s folks, the Baier-Hills family had also been privileged to assist Children’s with a few financial gifts along the way. What other response could we possibly have to the people who gave us our son back and offered our entire family a new lease on life?

  To show our appreciation for all they had done for us, we had no choice but to join Children’s team and be available to them whenever, wherever, and however they needed us. They had been such a vital part of our family for the past six years, we were compelled to become part of the unofficial team at Children’s for the rest of our lives—or at least until someone told us to go away. And not just part of that team; we were all in.

  Fighting heart disease is much more like running a marathon than a sprint; it is almost as if we are all part of the same relay team making our way around the track, handing the baton off to the next runner as we make our way to the finish line, and combining our efforts to battle pediatric heart disease. Also part of that great team effort over the years have been all the great folks outside the hospital who have been with us every step of the way:

  Dear family and friends,

  Thank you for your prayers and good wishes. They worked—and then some!

  The last e-mail I sent you was written from the surgery center waiting room as Paul was heading into his third open-heart surgery. Postsurgery, there were definitely some sleepless nights in the Cardiac Intensive Care Unit, with beeps from the monitors triggering more heavy medicine; more beeps and concern about his lungs and shallow breathing; more beeps and worries about his high blood pressure.