New Heart

One seldom meets with heroism, and rarely in a mere child. Ethan Lindberg was just six months shy of seven years old when my family first had the privilege of meeting him last fall at Children’s Hospital of Boston (CHB). We were newcomers. Ethan had been there since May. Members of the incredibly dedicated medical staff were pulling every trick they had up their sleeves in an effort to conjure the multiple complications resulting from congenital heart defects. What Ethan’s heart lacked in physical strength it more than compensated for in courage.

I learned about Ethan before actually meeting him as his family was so gracious to take the time, despite the stressful situation they found themselves in, to reach out to us to show us the ropes before we ever arrived in Boston. They’ve always been an incredible encouragement as well as indispensible guides for navigating the rough waters between the Scylla of living with congenital heart disease and the Charybdis of risky treatment.

Ethan was one of those patients who before you meet them you torture yourself trying to think of some clever way to cheer them up and brighten what you assume must be a very dull day, only to find yourself walking away from meeting them with a big smile on your own face and an extra spring in your step. For Ethan, despite the very trying circumstances God saw fit to throw his way, there was rarely a dull moment—at least not for those who had the pleasure of making his acquaintance. Much of Ethan’s exuberance was derived from his love of music. If I didn’t know better, I would think that Ethan was born with earbuds, so ubiquitous were they.

I don’t mean to make light of Ethan’s situation. He spent many a long day piled upon day in hospital and was often in great physical discomfort, even in little ways. For example, certain medicines he took forced him to limit his liquid intake, leaving him with constant thirst. Yet Ethan refused to allow his physical condition and surroundings to defeat his spirit.

One morning when our George was in CICU, Elisabeth returned to the room after a short break and reported, “I happened to walk by Ethan’s room and he was having a dance party with his nurses.” Later that day we ran into Ethan’s mom, Jessica, who said, “Oh yeah, he starts every day that he feels physically up to it with a dance party.” Isn’t it amazing that God often instills those whom he plans to call home so early with wisdom beyond their years? Wouldn’t it soothe so many of the world’s ills were we all to take Ethan’s prescription of starting off the day by dancing?

It became painfully clear that Ethan’s condition was deteriorating and that without a heart transplant he would not be long for this world. But it was not a simple matter of finding a suitable heart. His body had to get itself just right before successfully receiving a new heart. And the heart he was born with would have to sustain him in the meantime.

Despite the astonishing efforts of his parents and the medical staff at CHB, it was not to be. The Lindbergs and the CHB medical staff have officially set a new standard for the phrase “They did everything humanly possible.” I would be remiss not to add that much of what Ethan and his family has endured over the past seven years has forged the path for so many heart babies who have come after him, both now and for generations to come. Great strides have been made in treating congenital heart disease, and we all owe an eternal debt of gratitude to Ethan (and the entire Lindberg family), as well as others like him, for his heroic courage and steadfast, indefatigable pioneering spirit.

Other than an all too brief stay at home punctuated by visits to a local hospital, Ethan would remain in CHB for more than a year before going home for good—but not home to the Midwest to await yet another procedure. This time he left the hospital completely whole and with his new heart. You see, on Tuesday, June 12, 2012, at around 6:30 in the morning, Ethan went home to be in Heaven with his Lord , where there are no more needles, no more painful surgeries, no more respirators, no more prescriptions, no more uncertainly, but where I’m sure there is endless music and dancing.

Praise the Lord! Sing to the Lord a new song,
his praise in the assembly of the godly!
Let Israel be glad in his Maker;
let the children of Zion rejoice in their King!
Let them praise his name with dancing.
Psalm 149:1-3

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.

Fear and Trembling

Now that ten months has passed, I wish there had been a camera in the room to record the expressions on our faces as we sat feeling as if our very souls were being sucked out of our bodies. At the time, of course—July 17, 2011—I remember thinking that a good case of permanent amnesia didn’t sound bad at all. Of all the odd thoughts that crossed my mind was, “What does it look like from his perspective, this doctor who just looked us in the eyes and uttered the words, ‘Probable fetal demise.’ ” My mind’s eye envisions us both—my wife, Elisabeth, and I—looking like mirror images of Edvard Munch’s The Scream.

“Probable fetal demise.”

The words bored into us like an assassin’s bullet.

I vividly remember while getting my tonsils removed when I was in kindergarten experiencing what I can only describe as an out-of-body experience. It was as though I was hovering face down directly above the operating table at about ceiling-height watching the surgeons as they bowed intently over me. July 17, 2011, felt similar, although the circumstances were vastly different (despite the odd coincidence that both events involved doctors).

We were almost euphoric going into the ultrasound. Fresh off a trip to the Bahamas, which extended to a long visit to Elisabeth’s parents’ beach house in North Carolina, we were excited about hunkering down for the last half of the pregnancy, awaiting the arrival of our second child. This was our 20-week ultrasound—the one where the mass of rapidly dividing cells we’d seen on previous visits was suddenly metamorphosed with arms and legs—and “plumbing,” which for the second time we’d decided to keep secret from ourselves. How silly it seems in retrospect that we were so adamant about the medical staffs of two hospitals not blurting out the sex of our baby after the doctor had said, “Your baby is suffering from severe congenital heart defects.” Emerging hypoplastic left heart syndrome (HLHS). Funny how a term we’d never heard before in one moment came to nearly define our existence throughout the remainder of the pregnancy.

No surprise we’d never heard of it. Of the just over four million babies born in the U.S. each year, only 1,000 are born with HLHS—in other words, we’d had about a .02 percent chance. With that kind of luck, we should have left the hospital and bought a lottery ticket. The doctor left us one sliver of hope—about the size of a pinkie nail clipping. He mentioned, “You might contact Children’s Hospital of Boston. They’re doing some cutting-edge procedures … with limited success.” At the time, it seemed every bit as promising as watching your house being ravaged by fire and a passerby suggesting, “You might try spitting on it.” But it was all we had to cling to.

I honestly don’t remember the drive to pick up our then 2 1/2 year old son from his godparents' house, other than the following verse from Genesis 22 running through my head in continuous loop: “Take now thy son, thine only son Isaac, whom thou lovest, and get thee into the land of Moriah; and offer him there for a burnt offering upon one of the mountains which I will tell thee of.”

To be continued.

Résumé

PROFESSIONAL SUMMARY
More than a decade of professional experience as a writer, editor, and marketing specialist.

RELEVANT EXPERIENCE
Writing
Author of more than 100 articles in dozens of magazines and newspapers, as well as numerous technical documents and online training guides for government agencies.

Editing
Served as both a staff and freelance editor for numerous industries.

Marketing
Developed both print and Web content for clients in various industries ranging from financial institutions to medical equipment.

PROFESSIONAL HISTORY
Freelance Writer and Editor
August 99-Present
Wrote and edited for both print and electronic media for numerous market sectors, including magazine publishing; marketing/economic development; manufacturing; medical equipment; financial; construction; contract elicitation; and lifestyle and entertainment. Projects have included feature articles for both national and regional magazines and newspapers, Web site content, government contracts, new-product brochures and product descriptions.

GeoLogics Corporation
April 09-Present
Charleston, SC (Headquartered in Alexandria, VA)
Senior Technical Writer / Editor (Clearance Level: SECRET)
Government contractor assigned to the Department of Navy Space and Naval Warfare Systems Center Atlantic (SPAWARSYSCEN Atlantic) on a major enterprise computer program being developed for the Department of Veterans Affairs (VA).

Charleston Magazine
June 2006-March 2009
Charleston, SC
Associate Editor
Managed editorial content for various departments, including homes, food and wine, business, outdoors, natural history and neighborhoods. Scouted and planned stories for departments under my responsibility and assigned stories to freelance writers.

Assistant Editor
June 2006-June 2008
Writing and editing assignments included features and columns for subjects ranging from food to outdoors to business to the arts. Oversaw editorial internship program.

Southern Progress Corporation (A Division of Time-Warner)
March 2003-September 2005
Birmingham, AL
Copy Chief, Southern Accents and Entree magazines
Managed copy desk for an international shelter magazine (Southern Accents) with circulation of more than 2.6 million as well as a lifestyle-and-entertainment magazine (Entree) custom published for Neiman Marcus. Also managed the magazine's editorial internship program.

Vulcan Publications
March 2001-March 2002
Birmingham, AL
Managing Editor, Construction Site News
Managed all editorial operations for national B2B trade magazine serving the construction industry with nationwide circulation of 33 thousand.

The University of Virginia
January 2000-December 2000
Charlottesville, VA
Graduate Instructor Fall Term, 2000
ENSP 106, Public Speaking and Forms of Rhetoric

Teaching Assistant Spring Term, 2000
ENMD 326, Chaucer and the Visual Arts