Catching up with a dragon-slayer

20140729_George-32-199x300Last summer we introduced you to William St. George Hunter, aka George, a little boy from South Carolina born with a congenital heart defect. Named for the mythical slayer of dragons, George was one of the earliest children to have a Melody valve—a replacement heart valve that can be expanded as a child grows—implanted into his heart to replace his mitral valve (which helps manage the flow of blood out of the heart to the rest of the body).

We checked in with his mother Elisabeth to see how George, now almost three years old, is doing. Here’s what she told us.

When last y’all wrote about our little dragon slayer, he had just become the twelfth child to have his heart’s mitral valve replaced with a Melody valve by cardiac surgeon Sitaram M. Emani, MD.

Once home, George immediately started gaining weight—something he’d not been able to do in months—and in just a couple months had caught up to where he should be. (It made this mother’s heart happy for him to have “respectable thighs” when I put him in bubble suits.)

The biggest difference was in his appetite. Before his Melody valve, mealtime was a nightmare. He had been a vigorous eater as a baby, but as a toddler started rejecting more and more foods. By the time he showed other symptoms of cardiac distress, he was basically surviving on PediaSure, and throwing up much of that.

The Melody valve changed all of that immediately. His appetite returned, his color was rosy, and he looked—and, you could tell, felt—much better.

His dragon returns

Early this summer, exactly one year after his surgery, I noticed George’s appetite was very subtly declining. He still had unmatched energy, wasn’t sweating (at least no more than the rest of us at the beginning of a Southern summer) and seemed like himself. But over the next month mealtime became a struggle. All day long I tried to feed him, and most of the time he resisted.

We already had a cardiac check-up—one of the many George has had over the last year—scheduled for June 20, but on the 18th I took him in for an emergency appointment. An echocardiograph showed that his Melody valve, while still functioning perfectly, had shifted, and was creating high pressures in his heart. We were admitted to our local hospital the following day, and a few days later we were Medflighted to Boston, the second emergency flight of his short life.

Once at Boston Children’s, his Heart Center team found that the valve had indeed shifted and needed immediate attention. He went to the cardiac catheterization lab, but the cardiologist, Boston Children’s cardiologist-in-chief James Lock, MD, felt the valve was too unstable to dilate. So we opted for surgery to replace George’s Melody valve with a new one.

On Monday, June 30, St. George successfully battled against his dragon again, with Dr. Emani by his side. We celebrated July 4th from the new recovery wing on the 8th floor, watching the tops of Boston’s famous fireworks. We headed back south a few days later.20130516_ThrivingEmani-28-300x189

Battle #3

Once home, George seemed to feel great but his appetite didn’t pick up as much as I felt it should. I kept telling myself that he’d had major surgery, been on bypass, had been discharged in nearly record time and that his body was still recovering. But still, a small voice wouldn’t let me shake the feeling that something was wrong.

His appetite continued to go down and his coloring became pale. I followed my instincts and scheduled an appointment with George’s local cardiologist. That day, two weeks after he’d been discharged, George’s echo showed that his new valve had shifted again, and more dramatically than the last one.

We were on another Medflight the following morning.

To say that everyone was disappointed is a huge understatement. We were so sad to find out that George was likely facing his third open-heart surgery. We love our local cardiologist, but we were relieved to be going to the hospital that first gave him a fighting chance before he was even born.

When we arrived, his team at Boston Children’s decided cardiac catherization was too risky. So on Thursday, July 24, we handed George over to the anesthesiologist for the second time in three weeks.

When George went into surgery, we didn’t know the exact plan for his mitral valve. We knew, though, that another Melody valve wasn’t an option. It had given him a year’s growth, for which we were so grateful, but its awkward shape no longer fit with the structure of George’s left ventricle.

Our favorite option was for Dr. Emani to replace it with the smallest adult tissue valve available. But we knew he had to be extremely careful not to damage the electrical circuitry of George’s heart.

Surgery started around 7:30 in the morning. Five and a half hours later, George was off bypass and had done very well. Dr. Emani told us that he had fit the smallest adult valve, and that we could see George in an hour or so. George’s recovery was quick, and by Saturday evening he was running around in the hospital’s Prouty Garden.

We were discharged five days after surgery, but stayed in Boston for two weeks to make sure everything stayed in place this time.

On August 9, we high-tailed it home. George has barely stopped running since we got back.

melody-valve-patient-George-Hunter-199x300Looking ahead

George is doing great now, but we know full well that his fight isn’t over. He has a valve that is not his own, so we have to remain vigilant for signs that scar tissue is impeding it or that he has outgrown it. He has a lifetime of “tweaking” ahead of him, and certainly more surgeries. While we don’t look forward to those times, we are so grateful for them as the alternative is no St. George.

We know the dragon will return, but we are confident in our armor and army.

Keep up on George’s adventures by following his mother Elisabeth on Instagram.