Our patients’ stories: Hunter’s heart journey

By Wendy Paulin

Hunter as a baby

As a parent, when you look at your newborn, it’s hard not to get swept up by all the possibilities that lie ahead. Your child has the world ahead of him—you can’t help but wonder what life’s adventures have in store. That feeling of unlimited potential is why Dr. Seuss’s, “Oh, the Places You’ll Go” is such a big hit in our family, both for my four boys and myself. But when I read “Oh, the Places You’ll Go” to my youngest son, Hunter, the words took on a whole new meaning. As I read him the story and shared the bright, beautiful artwork with him, I couldn’t help but feel a knot inside when I came to the part where things don’t go as planned.

As Seuss so wisely writes, “There are some, down the road between hither and yon, that can scare you so much, you won’t want to go on.” As a mother you do everything in your power to protect or guide your child away from the road Seuss describes, but in some cases you just can’t. That was very true for Hunter.

Hunter gets a little laugh therapy from Boston Children's Clown Care Unit

Hunter was born with a series of congenital heart defects. When he was just 3 days old he was diagnosed with coarctation of the aorta, a narrowing of the aorta that can restrict blood flow. I have vivid memories of my husband and I sitting down with a pediatric cardiologist and having him tell us that Hunter needed heart surgery as soon as possible. As waves of emotion crashed over me, I remember the doctor telling us it was normal to mourn the life our baby may have had—it was highly unlikely that Hunter would ever be a football player or star athlete—but because of the treatment available, there were plenty of other things he could succeed at, and he assured us that Hunter would be OK.

At the time, I chose to focus on those last couple of words: “He will be OK.” In time it became a mantra I would say in my head each time Hunter faced a new obstacle.

Hunter had his first surgery at 5 days old. I wish I could say it was his last, but his heart journey was far from over. A few days after his surgery it was clear that Hunter wasn’t recovering as well as he should’ve been. More tests were administered and Hunter was diagnosed with Shone’s complex, a rare congenital heart disease affecting the left side of the heart. They also found problems with his bicuspid aortic valve, as well as mitral valve stenosis, an atrial septal defect and endocardial fibroelastosis. All were treatable, but the defect of his mitral valve proved to be a real problem.

Hunter at Boston Children's

We learned early on that Hunter’s treatment wouldn’t be typical—his heart was too small to replace a valve—and the only option he had was to have a balloon valvuloplasty. Through a catheter, doctors would take a tiny balloon and insert it in his valve. Then they’d inflate the balloon a tiny bit, forcing the valve open and improving his blood flow. We immediately began researching the procedure and all roads seemed to lead to Boston Children’s Hospital, the hospital with the most experience treating kids like Hunter. We placed a phone call, and with the guidance of a nurse, we were quickly connected to Dr. James Lock, Boston Children’s cardiologist-in-chief. Dr. Lock discussed Hunter’s case with us and the very next day we found ourselves on a road trip from Maryland to Massachusetts.

Over the next few months we traveled back and forth between Maryland and Boston Children’s, and the hospital quickly became our home away from home. The ultimate goal was to get Hunter big enough to be fitted with a new mechanical valve. Hunter’s cardiologist at home worked with his team in Boston to reach this goal. After several valvuloplasties, open-heart surgery to repair his mitral valve and a prolonged stay in the heart ICU, we were finally able to reach that day.

In July of 2003, Hunter had his second open-heart surgery, this time to have his pesky mitral valve replaced with a working mechanical valve. Thanks to the steady hands of Dr. Pedro del Nido, Boston Children’s chief of Cardiac Surgery, the operation was a success and Hunter had a functioning mitral valve for the first time in his young life.

Seven years later, when Hunter had outgrown his “baby mechanical valve” a bigger version was put in. In all, my son has had five heart surgeries, four of which have been open-heart surgery. Like many heart parents, my husband and I know congenital heart defects can be unpredictable, and we know there is more treatment in his future, but unlike when he was a baby we now have Hunter’s age and

Hunter at the Super Bowl

his strong resiliency to ease our worries.

In fact, Hunter is so strong he was recently awarded the honor of being named the NFL Play 60 Super Kid for 2012-13! Hunter entered the competition describing how he is unable to play contact sports due to the blood thinners he takes, but finds other ways to stay active, like the 26-mile bicycle ride our family took last year. As the NFL Play 60 Super Kid, Hunter opened the ceremonies at Super Bowl XLVII, running the football out on the field to hand to the officials. He even starred in a video that aired during the pre-game.

We owe so much to Hunter’s doctors and others for making this possible. Without the wonderful medical care he received and the guidance and support offered to us, none of this would have been possible.

Now if I were to read “Oh, the Places You’ll Go” with Hunter, that knot in my stomach wouldn’t be quite as tight as it once was. I know Hunter has traveled that twisty road, but he is able to navigate it with the help of amazing doctors. Hunter’s journey has not been easy, but the twists and turns have taken him to some incredible places, including Boston Children’s and the Super Bowl.

Of course no two journeys are the same, but if you are a parent of a child with a serious medical condition I hope you can find some comfort in Hunter’s story, and also in the words of Dr. Seuss, who assures children (and their parents) that “KID, YOU’LL MOVE MOUNTAINS…”

Trust me, in some shape and form, they will!