CHRISTOPHER COBUN WAS BORN WITH HIS HEART OUTSIDE OF HIS CHEST. HE WASN'T EXPECTED TO LIVE EVEN A DAY, BUT HE HAS FLOURISHED, THANKS TO ONE TOUGH MOM WHO REFUSED TO LET HER SON'S CONDITION HOLD HIM BACK
By Christina Tapper
Photographs by Mary Ellen Mark
A sight rarely seen: Christopher without his chest protector (at his Blackshear, Ga., home in December). “I take precautions with some stuff I do,” he says. “But other than that, I’m okay.”
Christopher Cobun sat at his dining room table in Blackshear, Ga., flipping through the pages of his new WWE book "There they are!" the bespectacled 12‑year-old exclaimed at his first sight of his favorite wrestlers, John Cena and Triple H. And yep, Christopher would love to body‑slam the bad guys the way his heroes do. There's just one problem: The chest protector he wears, a hard plastic shell that safeguards his heart, would get in the way.
Christopher doesn't mind, though. In fact he's downright cheerful, likely because he's already beaten incredible odds. Born with an extremely rare congenital condition known as ectopia cordis, where his heart is exposed due to an undeveloped breastbone , Christopher wasn't expected to live 12 minutes, let alone 12 years. Yet the rambunctious sixth grader who swims, bikes and plays saxophone in his middle school band has not only survived, he's thrived. His success is a testament to his tenacious mother, Stacey Wehmann, who decided almost from the moment she learned about her baby's fragile condition that she would do things her way. No, she would not terminate the pregnancy. No, Christopher would not be tethered to a ventilator for the rest of his life. And yes, she would put him on roller skates when he was barely out of diapers. "She worries like any mom," says Christopher. "But she doesn't stop me from being me and having fun."
“HE HAS NOT ONLY SURVIVED, BUT THRIVED. HE'S A REAL MIRACLE"
Thirteen years ago Wehmann was in the glow of her first pregnancy. She never had morning sickness, and "I always felt good," she says. All that changed after her first ultrasound. Instead of giving her a clean bill of health, the technician left the room. She came back with the doctor, who delivered the shocking news that the baby's heart was beating outside its body. "It was devastating," recalls Wehmann, 42, a homemaker who at the time lived in Ravenna, Ohio.
His mom, Stacey Wehmann, encouraged Christopher (at his school gym) to play basketball. "I wanted him to enjoy himself and didn't let any worry get in the way," she says.
Her happiness soared the moment Christopher took his first breath, on July 14, 1997. "I was so happy to hear him cry," she says. "I knew he was alive." But a moment later, doctors whisked him away to the operating room, where they positioned his heart and liver — which was also exposed — and covered his chest with cadaver skin. Wehmann and Smith weren't allowed to hold their son that day, or the next, or the next. Christopher stayed in the intensive‑care unit at Cleveland Clinic Children's Hospital, enduring a tracheotomy to fit his ventilator and a bevy of powerful antibiotics to fend off infections. "They poked him so many times with IVs and catheters," Wehmann says. "It was hard to see as a mother." When Christopher was a month old, doctors told his parents that he had contracted an infection that could kill him. "I bawled my eyes out," she remembers. "But Christopher as a baby was a fighter."
So was his mom. Wehmann, the older of two sisters who grew up in northeastern Ohio, said she is naturally optimistic — and feisty. At one point doctors had exhausted all the veins on Christopher's body, so they announced their plan to shave his head to find one. "I fought them all day," she recalls. "I did not want them taking my baby's hair." Finally convinced there was no alternative, she relented, and, of course, "his hair grew back." Her strength was rewarded three months after Christopher was born. She gently, carefully, lovingly held her tiny baby for the first time. "It was," she recalls, "the greatest day."
During the next 10 months, Wehmann and Smith, a chef, made the hour‑long drive to the hospital every day. They hung a Winnie the Pooh mobile over Christopher's bed and sang lullabies while rocking him to sleep. "Every day we'd wake up and were eager to get to the hospital," says Wehmann. They learned to do everything the nurses did, like clearing Christopher's ventilator tube or suctioning mucus from his throat. The routine was exhausting, but Wehmann and Smith were committed to their son. "There was no time to sit and really think about the situation," she says. "It was all about just making sure we get Christopher through the day and on to the next." (She and Smith broke up in 2001; he is not in regular touch with Christopher.)
Christopher (showing his chest protector)reports to the school nurse each morning to make sure he has it on.
'COMFORTABLE IN HIS OWN SKIN'
Friendly and outgoing. Christopher Wall never lets his ectopia cordis slow him down. Sure, after having surgery to create his own breast plate, he cant be too reckless. But Wall, 34, a host at a Philadelphia restaurant, is always ready for karate or a game of hoops. "It's a life‑threatening condition, but it's a part of who I am.' says Wall, who lives with his mother, Teresa. He's so self‑assured that he doesn't hesitate to go shirtless at the beach, though his pumping heart is visible. "People will stare, and he's aware of why they're staring,” says. “It doesn't bother him, though. He's comfortable in his own skin,"
“SHE WORRIES LIKE ANY MOM, BUT SHE DOESN'T STOP ME FROM BEING ME"
“Caring for him has never become tiresome or tedious,” says mom Stacey (at home). “This I my child and I love him.”
Fortunately Christopher kept getting better. His skin regenerated after a few months. He sat up at 7 months. He greeted his parents every day with smiles. Finally, at 13 months, he went home. Stacey fought for him," says Jackson. "She wasn't going to let the doctors' outlook discourage her."
Wehmann weaned Christopher off his ventilator when he was 14 months old, far earlier than doctors expected; she just knew he would be able to breathe on his own. She also put an end to the mandatory round‑the-clock nurse care (which, like everything else, was paid for by the state of Ohio) when he was 6. "We didn't need her," she says. "Even with the nurse there, I was still hands‑on. If there was crying, I was rocking him."
And she didn't envelop her son in bubble wrap either. Wehmann buckled roller skates onto Christopher's feet when he was 3, and away he went. Today they Rollerblade together. Married to vascular surgeon Tom Wehmann, 57, since 2005, she and Christopher also love to play Monopoly and Sorry! and swim in the pool at their three‑bedroom home on a golf course. "What she did for me means a lot. I love her for that," Christopher says. "She makes sure I have the most normal life possible."
For his part, Christopher — who wears hearing aids, the consequence of the powerful antibiotics he took as a baby — has a complete understanding of his condition and can get artificial ribs in a few years. Wehmann explained his situation to him in detail about four years ago, and he'll give the short version of the story to the occasional classmate who asks about the Velcro straps peeking out from under his shirt. During a recent gym class, he skipped push‑ups because it required him to touch his chest to a ball each time he lowered his body. But "for the most part, he's right there with all the other kids," says gym teacher Dde Jordan.
Mission accomplished, says Mom. Wehmann, who had faith her only child would beat all odds, continues to have the highest hopes for him. "I want him to just live life like a normal person and not be bound by his condition," she says. "And he's doing that right now as a kid."
A RARE DISEASE
No one knows what causes ectupia cordis, though one study estimated it occurs in 8 out of 1 million births. Regardless, odds of survival are grim: More than 90 percent of newborns die within a year, says Dr. Larry Latson of the Cleveland Clinic. And survivors often suffer from pulmonary problems and infections.
“Though on a ventilator for 14 months. Christopher always smiled,” says Stacey.