Heidi Schlagheck walks into the living room holding her sleeping son in her arms. Austin, wearing sage-green flannel pants decorated with dragons, looks like most toddlers—until the now 15-month-old yawns and wakes up. His right arm hangs limp, and he suddenly throws up, dislodging a small yellow feeding tube from his nose. Calmly, Heidi takes him into his room, places him on the changing table and expertly puts the tube back. Austin screams the whole time. "You just feel like you're torturing your own child," Heidi says. "It's completely against what you want to do as a mother."
Not that she's complaining—especially after the rough ride little Austin has already endured. In July 2007 a doctor told Heidi, 28, and her husband, Chris, 28, that Austin, then just a few weeks old, had a fast-growing brain tumor and would most likely die within months. That followed a prenatal diagnosis of another potentially fatal problem: hypoplastic left heart syndrome, in which the child's aorta, aortic valve, left ventricle and mitral valve are underdeveloped.
One condition was rare enough—only 2,000 babies are born each year in the U.S. with the heart syndrome—but the combination is almost unimaginably unique, says Dr. Leslie Sutton, Austin's neurosurgeon at Children's Hospital of Philadelphia. "I pretty much laid it out: 'This is a bad deal, but let's follow it. We'll fix the heart, and we'll deal with the tumor,'" Sutton says. The news was almost more than the couple could bear. "Heidi was screaming, a full-blown, echoing scream, and cradling Austin," Chris, an Air Force captain from Cincinnati, recalls. Says Heidi, a homemaker and former Air Force lieutenant: "I couldn't hold him and believe he was going to die. It didn't make sense."
But from the start, Heidi and Chris, who met at the Air Force Academy in Colorado Springs, had been determined to battle for their baby. Heidi was 13 weeks pregnant when she went for a routine ultrasound in Orlando, not far from their Rockledge, Fla., home, and learned of Austin's heart defect. The couple researched their unborn child's disease and decided to have Austin undergo a three-part heart surgery that had been pioneered at Children's Hospital 20 years earlier that would reroute blood flow to compensate for the absence of the left side of the heart.
The first, reconstructing the heart to use the right side to deliver blood to the body and the lungs, would be when Austin was 3 days old; the second, connecting blood-delivering top veins directly to the lungs, when he was 6 months; and the third, more new connections, when he was 3 years old. "Patients who had the surgery are now in their 20s, and the vast majority are doing well but some are experiencing heart failure," says Dr. Jack Rychik, a CHOP cardiologist who laid out all the options for the Schlaghecks. "We're not curing this." Still, all the Schlaghecks were asking for was survival.
The waiting was almost the worst part. Heidi did not have a baby shower, and she and Chris did not decorate the nursery, knowing there was a chance they might not be bringing their baby home. "It was like walking around the world with the pregnancy glow, while simultaneously dying a bit inside," says Heidi.
On June 14, Austin was born at the hospital of the University of Pennsylvania, weighing 5 lbs. 10 oz., and he was immediately whisked next door to CHOP. Three days later doctors performed the first operation (which has a 90 percent survival rate). Then, just as Heidi and Chris were beginning to relax after their months-long ordeal, Dr. Sutton told them Austin had a brain tumor and it was most likely malignant.
That night Chris, who'd begun keeping a journal, because in his moments of hope, he says, "I wanted Austin to know his story," wrote, "Today is the hardest day of my life. Today is the hardest day of your mom's life. This is cancer. And you are going to die."
Follow-up MRIs showed the tumor growing quickly. But in late October a scan showed it had stopped growing. Doctors agreed to remove it but warned that Austin still only had a 50 percent chance of surviving the procedure. To prepare their child for surgery, his parents dressed Austin in the Superman costume he'd worn for Halloween just days earlier. Afterward they received incredible news: The tumor was benign. "God has answered our prayers," Chris wrote in his journal that night.
Since then the days have become easier—and their boy has begun to flourish. He babbles and loves watching football with his father. He has occupational therapy and other exercises several times a week. Doctors hope they will bring back the use of his right arm, which became paralyzed when the brain tumor was removed, and expect him eventually to crawl and later walk. On his first birthday—a day his parents had barely dared to dream of—they held a small party, just the three of them. They opened presents, let him taste the vanilla cake and rejoiced at their good fortune.
"I no longer have to think about burying my son," Chris wrote in his journal Nov. 7, the day of Austin's brain surgery. "My son can bury me when the time comes. And that is how it should be. Well done, Austin. Well done. I am so proud of you."