Boy Born With Heart Outside Body Defies Odds

Aug. 4, 2009— -- Christopher Wall came into this world with all the right parts, except that one of them was in the wrong place. His heart was beating outside his body. This was more than a medical rarity. It was a mystery.

In the summer of 1975, Teresa Wall was enjoying her first and relatively uneventful pregnancy. She recalled being in perfect health while carrying her baby, not even suffering from morning sickness. Indeed, when it came time to give birth, Wall was only in labor for two hours. She said there was an air of relaxation at the hospital.

"Everyone was all joking and laughing," she said. And the doctors and nurses teased her, asking, "This is your first baby?"

But the joking suddenly stopped when doctors delivered Christopher Aug. 10, 1975. "It was like a cloud of doom came over," she recalled. "Christopher was born and everything got really quiet, really quiet. The nurses started hustling around."

Watch Christopher's story and more medical mysteries on "20/20" Friday at 10 p.m. ET

Doctors feared the newborn would not survive even one day. Born with an extremely rare heart condition known as Ectopia cordis, Christopher's heart was exposed outside of his chest. His doctors said it is a condition so rare that out of every 1 million babies born, only about 5 to 8 of them will have Ectopia cordis. Many babies with this condition die within their first 16 days, and some do not even survive the birth process. Doctors are still unable to explain why some babies are afflicted and others are not.

"A number of these conditions are caused from genetic and inherited causes but we don't know exactly why some children may carry a particular gene and others don't," said Dr. Victoria Vetter, a pediatric cardiologist at the Children's Hospital of Philadelphia, who was on staff at the time of Christopher's birth.

Wall was immediately warned that Christopher was born with a severe case of the condition and he may never survive. Her newborn son was rushed to the hospital's neonatal intensive care unit. Without the enhanced medical procedures used today, Christopher's condition came as a "complete surprise."

"Women, unlike today, did not get ultrasounds or sonograms during the pregnancy, and ultrasound was just in the early stages of development, particularly as far as the heart was concerned," Vetter said. "So the doctors did not know Christopher had this condition until the moment he was born. It was a complete surprise."

Surgeries Attempt to Tilt Heart Into Anatomically Correct Position

A team of doctors immediately stabilized the baby, putting him on a ventilator and checking for other abnormalities.

"The heart was made perfectly normally, other than the wall between the two lower chambers hadn't completely formed," Vetter said. "It just simply was outside the chest and pointing straight out."

Since Christopher's heart developed outside his chest cavity, there was no room inside his body for the tiny organ. Combined with the strain that surgery would place on the heart's blood vessels, this made it impossible to reinsert Christopher's heart into his body. Nevertheless, the baby surprised his doctors by surviving his first few days and, then, his first few weeks.

During his initial 18 months of life, Christopher endured 15 surgeries, all of which were attempts to place his heart into the anatomically correct position. But each surgery posed a greater risk to the blood vessels, with the potential to dangerously restrict blood flow and cause the heart to stop beating. Doctors had no choice but to cover the heart with skin and let the chest cavity grow.

Christopher's small chest was also weak and unstable. He breathed with the help of a respirator because his lungs could not successfully function on their own. He was a medical rarity and, yet, despite all his complications, he was very much the apple of his mother's eye.

"I thought he was adorable," Teresa Wall said. "The tubes were in his nose so his face was all taped up, you really couldn't see him too much. But I only saw him. I blocked out the tubes and anything else that was going on."

Christopher quickly became a hospital favorite. Nurses said they strategically placed Christopher at the front of the beds so he could wave at visitors.

"He was Mr. Personality," said Janet Boyce, a nurse in charge of his care. "We always had him in an area, so he was the meeter and the greeter. He was very social."

Soaring Past Expectations, Christopher Leaves the Hospital

Throughout his three-year stay at the Children's Hospital of Philadelphia, his mother remained optimistic, shaking off the dark prognosis from doctors. Instead, Wall held onto an unwavering belief about her son's chances.

"I was never in doubt," she said. "Maybe it was a motherly instinct, but I just always knew Christopher would be OK."

In 1978, two days before his third birthday, Christopher was able to leave the hospital and go home for the first time.

"At that time he was still ... like an infant in a lot of ways." his mother said. "He was just so gentle, so it was really like bringing my baby home."

Still, doctors remained uncertain about his survival. At home, Christopher still required delicate round-the-clock medical care. His parents learned a host of emergency procedures, including CPR, just in case Christopher's respirator failed. They were also instructed to pound on their baby's back every four hours, 24 hours a day, just to keep his weak lungs clear.

To accommodate his weak lungs and protruding heart, doctors continued to try to build Christopher a breast bone in the next few years, but everything failed. In total, it took 21 surgeries but doctors successfully created the chest support needed for Christopher to become free from his respirator. At 6 years old, he underwent an operation that transplanted a portion of his hip bone into his chest to create a proper breast bone.

"It was sort of like finally ... finally," Wall said. "He just grew and progressed in leaps and bounds."

Because Christopher's delicate heart sat just beneath his skin, doctors fashioned a plastic breast plate out of the same material used for hockey masks, which he could wear under his clothes to protect his heart.

Christopher was able to live life like a normal kid, riding his first bike and playing sports such as karate and basketball. Teresa Wall made a point of letting her son take risks.

CLICK HERE to see photos of Christopher through the years.

33-Year-Old Christopher Refuses to Sit on Sidelines

"I just brought Christopher up saying that there are so many things out there to do, we don't have time to be sick, we don't have time to worry," she said. "I guess that was my encouragement, that don't be afraid, there are a lot of fun things out there to do."

As a result of Christopher's many surgeries, he suffered from hearing loss, and is learning-disabled. In 1995, he graduated from high school. Because of his hearing impairment, his speech is often slurred, or can be difficult to understand.

"Right now I play sports with my family, I used to take karate when I was younger," he said. "I like a good fight."

On the streets in his hometown of Philadelphia, friends said, he greets everyone like they're family, for which he's earned a special nickname: Mayor of South Street.

"He was introduced as the Mayor of South Street because that's what everyone called him," friend Ashley Andrien said. "I thought he, like, owned South Street or something."

On the basketball court, Christopher, who'll turn 34 Monday, doesn't sit on the sidelines, making three-pointers and rising to the challenge of competition.

"He's gotta be one of the toughest people I know," friend Jaime Carr said. "Everything he's been through and he hangs out with us and plays sports and hang out and party it up like a normal person. It's shocking."

Although Christopher recently lost his job of 12 years at a pipe/tube construction company because of layoffs, he said he wants to give back, volunteering at the same children's hospital that helped him survive.

"I just wanna be a good person," he said. "I just wanna work and help out with my family."