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Jackson took his first trip to Costco the other day. He sat in the cart wide-eyed, an explorer drinking in the lights and color and motion. He paid no attention to the stares, the whispers and pointing fingers.
His mother, Traci Holbrook, could not ignore them. People came up to her and wanted to know why her kid had tubes taped to his face, snaking to an oxygen tank. A few ignored the sticker on his car seat, which asks people not to touch his hands before washing their own, and pawed and poked and cooed at him, marveling at his rock-star-worthy long eyelashes. Well-meaning, maybe, but still. Traci met the stares with glares, told the touchers to back off, tried to answer rude questions with something like patience.
"I'm sure it must seem strange to people, seeing him for the first time," she says. "But the mama bear in me comes out and says, 'Bring it on. That's my child you're pointing at, and I will kick your ass.'"
Eighteen months ago, Traci would have counted herself among the clueless. Heart trouble was something she associated with old people. The idea that her own son could be born so different, at risk of dying from a heart attack or stroke or even a bad case of the flu before he ever saw his first birthday, was unthinkable. But then came the fetal ultrasound, confronting Traci and her husband, Chris, with the hardest decision they had ever faced — followed by her introduction to the unofficial sorority of "heart moms" raising kids with congenital heart defects. It's a world of round-the-clock feeds and meds and oxygen monitoring, tests and operations and baffling setbacks, grueling hospital stays and ferocious hope — a gauntlet of surgeries and aggressive medical interventions that not every child will survive.
The gawkers at Costco have no idea how fragile Jackson Holbrook is. Or how tough. Peel off his top, the one declaring that he's DADDY'S LITTLE MONSTER, and you'll find a Frankensteinish track down his breastbone from having his chest cracked open three times. There's an angry red scar from a lung biopsy across his right side, a port for a feeding tube on the left side of his abdomen. Other marks and bumps dot his torso, souvenirs of past blood draws and drains and catheters. Weighing in at a mere sixteen pounds, he's small for his age, but the doctors at Children's Hospital Colorado call him Samurai Jackson. He's a warrior who's scrapped his way through more life-or-death battles in his first twelve months than you'll see in a Kurosawa double feature.
Despite all the tests and prodding and poking, he remains a surprisingly unfussy baby, with a smile that can blaze up a room. His smile receives frequent mention in the frank, often poignant e-mails Traci sends to a long list of family, friends and supporters, updating them on his progress, as in this report from last May:
Jackson almost died twice in a matter of days. But he didn't give up the fight. The surgeon and the doctors and the nurses did their part to help him, but Jackson also had to step up and do his part.... Every time they knocked him out with drugs, they did it because he was fighting them, telling them he wanted to do it himself, for himself. He is amazing. I am truly in awe of him. Everything that has been done to him, and when he sees us, he still smiles....
Impressed as they might be by the samurai, some staffers at Children's are even more in awe of his mother, who shows up for appointments with detailed notes and questions and has been a vocal champion for Jackson. "Traci is a pretty phenomenal woman," says Dr. Adel Younoszai, director of fetal cardiology at Children's. "She puts some people in the medical system back on their heels a bit. What she feels is what you get. All moms, to some extent, have that kind of intrinsic caring. For her it's a very rich, very deep emotion. She loves that child."
Traci says she's grateful for the support and resources that Children's offers to parents at its Heart Institute, from sleepover rooms to social workers and "child life specialists." Staffers have helped her with logistics and insurance issues and encouraged her to be actively involved in Jackson's treatment. "I am absolutely a member of his medical team," she says, "and I seek out the people who are going to talk to me, not at me."
The Holbrooks have also learned from sharing information with other heart moms and dads in person or online, a vast network of families struggling with daunting medical challenges. Around 40,000 babies are born each year in the United States with a congenital heart defect, or CHD — roughly 1 percent of all live births. It's estimated that nearly a third of CHD babies have some degree of neurological or developmental disability, too, and heart defects remain the leading cause of death in infants. According to the Children's Heart Foundation, twice as many children die from CHD each year than from all forms of pediatric cancer combined.