Finding a Heart
The story begins when Victoria, who was pregnant with twins, went for her 20-week checkup. The doctor discovered that the left ventricle of Baby A's heart, the major pumping chamber of blood to the body, had stopped growing. The condition was so severe that no one knew whether the child would make it through the pregnancy. If he died in the womb, his twin was likely to die from the physical shock. Victoria, who lives in Stamford, Connecticut, was referred to New York–Presbyterian Hospital in New York City and put on drugs to help her baby's struggling heart.
On a hot August morning, at 36 weeks, Sean and his sister, Delaney, were born. By that afternoon, Sean was having an emergency cardiac catheterization to relieve the pressure in his heart. Six days later, he had his first major surgery to reroute his blood and turn the right side of his heart into the main pumping chamber.
It was a long and challenging operation, but Sean pulled through, just as he'd pulled through the pregnancy. There were intestinal troubles, feeding difficulties, and he had to spend another seven weeks in the hospital getting strong enough to go home. Victoria and her husband, Patrick, rotated shifts so one or the other could be by Sean's side. Though they lived 40 miles away, had a 3-year-old son, Ian, in addition to Delaney, and Patrick had a stressful job in finance, "we wanted Sean to know we were there for him," Victoria says. "And by the way," she adds, smiling, "he did."
Sean finally went home at the end of September, just shy of 2 months old. He didn't smile. He didn't coo. The skin around his mouth was purplish from inadequate oxygenation, and his eyes had the worried look of an old man. But he was rocked, bathed, serenaded with baby songs, dressed as Mickey Mouse for Halloween. Within a month or two, Victoria says, "you could see him start to think, 'Hey, maybe I'm not going to be poked or prodded every two days.'" The smiles started. And then the laughs. Almost all the typical baby behaviors but the whining. "If the twins were hungry and I fed Sean first, Delaney would cry," Victoria says. "But if I fed Delaney first, Sean would stay calm and watch. His attitude was, 'If this doesn't hurt, then what's the big deal?'" By Thanksgiving he was kicking his legs. By Christmas he had meat on his bones. In January he went back to the hospital for his second surgery.