Out of the Mouths of Babes

October came quickly, and November fast on its heels, notwithstanding that my duties kept me in Charleston for several weeks in November while Elisabeth and Henry settled in Boston. In an act of true chivalry, Elisabeth’s father drove all of our winter clothes that Charleston weather rarely necessitates but which we anticipated needing to brace ourselves against the cold New England winter.

On Friday, 18 November, I drove to Charlotte and stayed overnight. The next morning, as Elisabeth's mother and I headed to the airport, I was as giddy with excitement as a child at Christmas in anticipation of being reunited with my family. The flight was uneventful, and when I finally made my way to the pick-up point, I thought Henry, who had just turned three the previous month, would have to be pried apart from me with a crowbar.

I had notions of exploring a bit of the city with Henry, but Baby Hunter, apparently sensing the family was finally intact, had other plans.

William St. George Hunter, weighing 8 pounds, arrived on November 22, 2012, at 11:27 am at Brigham & Women’s Hospital. What happened from there that day is a bit of a blur. Elisabeth got to see George all too briefly before I accompanied him over for a quick bath and checkup in the critical care nursery before wheeling over to 8 South—the Cardiac ICU at CHB. Before whisking George off, though, the staff at B&W bent the rules a bit by sneaking Henry in to meet his new brother. Having been prepared that we might not get to bring our baby home to Charleston, Henry looked up at me with worlds of expectation in his blue eyes and whispered, “Daddy, can we keep him?”

The next several days were fraught with worry. One moment we seemed on top of the world (“You may have hit the jackpot,” one doctor told us), only a day later to hurry back up to CICU after grabbing a quick breakfast from the ubiquitous Au Bon Pain in the lobby (I think I will mark each of George’s birthdays with a ham and Swiss croissant) to find a medical team hovered over George. “We've observed some subtle signs that eating is putting too much strain on George’s heart, so we’re inserting a feeding tube through his nose.” Nosedive. We quickly discovered that Kipling’s stoic approach served best:

“If you can meet with Triumph and Disaster
And treat those two impostors just the same.”

Nevertheless, George’s general outlook continued to improve.

8 South is quite a close-knit family, thrown together into shared circumstances none of us would have dreamed possible. I found myself in awe of a family who had been there with their six-year-old since May. A single mother next door watched ceaselessly (I won’t say “tirelessly,” because we could read the exhaustion in her eyes) over her son, who had been in and out (mostly in) of 8 South since he’d been born 16 months earlier.

We had much to be thankful for on Thanksgiving Day, two days after George’s arrival. He beat his initial prognosis just by being born, and he seemed to get better each day. A group of volunteers, not just a few of whom were local parents of heart babies, cooked and delivered a full-course Thanksgiving feast for the families of 8 South out-of-towners. My parents, who arrived in time for George’s birth, along with Elisabeth’s parents, spelled each other, and Elisabeth and I, between bites to sit with George.

The weather had been unseasonably warm, but Thanksgiving broke clear and cold. Sensing that Henry needed to get out, and desiring some one-on-one time with him, I bundled us up and took a late afternoon walk with my oldest boy.

CHB, a teaching hospital of Harvard Medical School, sits adjacent to the austere and venerable campus. As we walked across the “Great White Quad,” I explained to Henry, “This is where students go to learn to become doctors.” He mulled a moment and answered, “Daddy, when I grow up I want to be a doctor.”

“Why, Henry?”

“So I can make George’s heart better.”

Although I’ve been knocked cold, I’ve never fainted in my life, but those words sent stars and planets whirring around my head. Here was a three-year-old who had been uprooted from his home and dog and friends and all else familiar and dragged off to a foreign land for to live for what must have seemed forever to him out of a suitcase in a hotel room, and on Thanksgiving his thoughts were for the wellbeing of his brother who had abruptly interjected himself into our heretofore tranquil family life.

We moved from 8 South to “The Floor,” and after thirteen anxious days and nights we were finally allowed to head home … before Christmas, which we had hardly dared hope. Before George, out of the 139 babies who had received successful fetal cardio intervention, only two had been discharged from the hospital without further treatment. George was the third.

Although we had to return for a second balloon catherization the day after Christmas, since then George has done incredibly well, showing steady and incremental improvement. We realize there are no guarantees (are there ever?), but so far George seems to have somewhat astounded his doctors. St. George is famous for slaying the dragon, and our wee St. George has certainly had his dragons to face (though not alone)—and likely yet has more to face. But so far the Great Physician has in his providence seen fit to bless us with a happy, thriving boy, a gift the size of which our gratitude can never measure.

Thanks be to God.

One Forty

Our sliver of hope expanded slightly, like a waxing crescent moon. Once home, the door hardly shut behind us before we began researching Children’s Hospital Boston. We weren’t surprised to learn that CHB ranked first in the nation in six out of ten specialties. Of course, most important to us, CHB leads the pack in researching and treating congenital heart diseases. It did surprise us to learn that the Advanced Fetal Care Center (AFCC) is the only place in the world that developed and performs groundbreaking intervention on the fetal hearts.

We braced ourselves for an excruciating wait after sending all the records and images of Baby Hunter’s heart to Dr Wayne Tworetzky in Boston, so we were shocked to hear back the next day. Dr Tworetzky’s initial impression indicated that Baby would be a good candidate for intervention. Then the wait began. But one week later we got the call we were waiting for: “Pack your bags and come to Boston. If we’re going to do this, we need to do it within the next two weeks.”

The window for attempting an effective fetal cardiac intervention doesn’t remain opened long. At 21 weeks, Baby’s condition had been diagnosed just in time. At 25 weeks, we touched down in Boston. The hardest part was leaving behind then two-year-old Henry in Charleston with his Aunt Annie and Cousin Oliver.

Beginning at 8:00 a.m., Monday, August 15, was a blur of activity: a sonogram followed by a consultation followed by an echocardiogram followed by another consultation followed by a facility tour followed by yet another consultation. Feeling like we were actively doing something boosted our spirits (besides, I can’t begin to describe the kindness and compassion of everyone— top to bottom—at CHB), but the last consultation brought us crashing back to reality.

Good news/bad news: Baby’s heart was not yet hypoplastic left heart syndrome (a complex domino effect which cumulatively leaves both left chambers of the heart severely underdeveloped), but we learned that the aortic valve was completely closed and the mitral valve was leaking badly as a result of the blood sloshing back and forth between the left atrium and ventricle with no place to go other than back to the lungs whence it had just arrived. Equally worrisome, the constant unrelieved pressure on the left chambers had left the left ventricle stretched and weak. The only option was for the intervention team to stick a hollow needle into Elisabeth’s womb, through Baby's chest and into the heart, which at that time was roughly the size of my thumbnail, and into the left ventricle. The target: thread a catheter through the needle into the tiny aortic valve and dilate it with a balloon to allow blood to flow in the right direction. Before our arrival, the team had done 139 fetal interventions. By Tuesday afternoon, we would be 140.

Thank God the procedure was scheduled early Tuesday morning. The intervention team allowed me to walk beside Elisabeth as far as those ominous double doors leading to surgery, but I was allowed no further. Then, more than ever, the reality of how helpless I was in the situation hit me full force. I understand the anguish of David in Psalm 140 (Eripe me, Domine) as, encompassed on every side by his enemies, he pleads the hopelessness of his situation. But admitting that his own strength has failed allows him the freedom to embrace the real source of his deliverance: “I know that the Lord will maintain the cause of the afflicted.”

Left alone in the room, I did two things to while away the time and distract myself: I prayed and I translated a poster from Spanish (which I don’t speak) into English. The poster extolled the virtues of making skin-to-skin contact with newborns.

I wondered if we’d ever even have an opportunity to hold Baby Hunter.

The first attempt was unsuccessful, but while the Chief of Pediatric Cardiology, James Lock, and the Dream Team stood around the surgical table deliberating the risks of trying again, Elisabeth (who was awake during the procedure) overheard Dr Tworetzky say, “They came from Charleston to give this baby a chance. They know the risks.We have to try again.” The team decided to make a rare and risky second attempt to thread the cath into the valve for dilation. It worked beautifully. The next day, we learned that while the procedure was a technical success, we were far from out of the woods. Only time would tell. Nothing left to do now but to wait three months while closely monitoring the heart. And praying, like King David in Psalm 140, “Deliver us, O Lord,” knowing that He would maintain the cause of number 140.

To be continued.