Dalakerman06
08-12-2009, 12:05 AM
Christopher Wall, 33, Survives Rare Condition
While pregnant with her son, Christopher, Teresa Wall had no reason to be worried about the health of her baby. Her pregnancy and even delivery had all gone smoothly, but after Christopher was born Teresa found out something was terribly wrong with her son: The tiny newborn's heart was beating outside of his body. Now 33 years old, Christopher had been born with a congenital condition called ectopia cordis -- he had never developed a sternum, so his heart had grown outside of his chest cavity. The condition is so rare that only five to eight babies out of 1 million are born with it, and the survival rate is so poor that many infants are stillborn or die within their first 16 days, according to researchers from the University of Illinois at Chicago. The rare nature of ectopia cordis means most doctors still don't understand its causes or origins. Because of advancements in sonogram and ultrasound technology, this kind of defect can often be identified before birth. However, because Christopher was born during a time when this technology was less advanced, his parents and doctors had no idea he suffered from the condition until the day he was born. In circumstances of ectopia cordis, the heart can be positioned within the neck, abdomen or between the abdomen and thoracic cavity. In Christopher's case, which is most common, his heart protruded out of his body and was totally exposed. Outside of its placement, however, the organ itself had developed properly. "The heart was made perfectly normally, other than the wall between the two lower chambers hadn't completely formed," Dr. Victoria Vetter told ABC News. Vetter, a pediatric cardiologist at the Children's Hospital of Philadelphia, had been on staff during Christopher's birth. After being rushed to the hospital's neonatal intensive care unit, Christopher was stabilized and put on a ventilator. Because ectopia cordis often occurs with both cardiac and non-cardiac abnormalities, including pulmonary atresia, Tetralogy of Fallot, cleft lip or palette and spine malformations, doctors checked the newborn for other complications. When no more congenital defects were found, doctors investigated whether they could insert Christopher's heart into his chest. However, they soon discovered the procedure would be impossible. There simply was no room in his chest cavity or a breast bone to support and enclose the heart. Because most children with this condition survive only a matter of days after birth, Christopher's next 18 months were nothing short of a miracle. During that time, 15 surgical attempts were made to build an artificial breast bone and place his heart into an anatomically correct position, reports ABC News. However, because Christopher's heart had been put through the stress of more than a dozen surgeries, doctors were concerned that it would not be able to recover from even one more. They were forced to cover the heart with skin to allow the chest cavity to grow. Three years later, Christopher was still a patient at the Children's Hospital of Philadelphia. It wasn't until shortly before his third birthday that he was finally able to go home for the first time. For his parents, Christopher's homecoming meant learning how to pound on his back every four hours, 24 hours a day, to drain mucous from his lungs, clear his throat and check for infection, according to People magazine. In addition, they were taught how to properly perform CPR if his respirator failed. Although he was home and no longer in the hospital, Christopher was still tethered to his respirator due to the weakness of his lungs. It took doctors three years and 21 surgeries to finally create enough chest support for his lungs by removing a portion of Christopher's hip bone and transplanting it into his chest to serve as a breast bone, according to ABC News. At six years old, he was finally free to breathe on his own. Today, Christopher's heart can be seen beating through his chest. While he may still suffer from hearing loss and a learning disability due to the operations he endured as a child, he not only holds the Guinness World Record for the oldest living person with ectopia cordis but he also has been able to live an active life thanks to a specially-made plastic breast plate he wears under his clothes to protect his heart. Through all the challenges, Christopher's family is grateful for every day. "We've learned so much from Christopher -- patience, love of life. Every day we're with him is a thrill," his father tells People magazine.
While pregnant with her son, Christopher, Teresa Wall had no reason to be worried about the health of her baby. Her pregnancy and even delivery had all gone smoothly, but after Christopher was born Teresa found out something was terribly wrong with her son: The tiny newborn's heart was beating outside of his body. Now 33 years old, Christopher had been born with a congenital condition called ectopia cordis -- he had never developed a sternum, so his heart had grown outside of his chest cavity. The condition is so rare that only five to eight babies out of 1 million are born with it, and the survival rate is so poor that many infants are stillborn or die within their first 16 days, according to researchers from the University of Illinois at Chicago. The rare nature of ectopia cordis means most doctors still don't understand its causes or origins. Because of advancements in sonogram and ultrasound technology, this kind of defect can often be identified before birth. However, because Christopher was born during a time when this technology was less advanced, his parents and doctors had no idea he suffered from the condition until the day he was born. In circumstances of ectopia cordis, the heart can be positioned within the neck, abdomen or between the abdomen and thoracic cavity. In Christopher's case, which is most common, his heart protruded out of his body and was totally exposed. Outside of its placement, however, the organ itself had developed properly. "The heart was made perfectly normally, other than the wall between the two lower chambers hadn't completely formed," Dr. Victoria Vetter told ABC News. Vetter, a pediatric cardiologist at the Children's Hospital of Philadelphia, had been on staff during Christopher's birth. After being rushed to the hospital's neonatal intensive care unit, Christopher was stabilized and put on a ventilator. Because ectopia cordis often occurs with both cardiac and non-cardiac abnormalities, including pulmonary atresia, Tetralogy of Fallot, cleft lip or palette and spine malformations, doctors checked the newborn for other complications. When no more congenital defects were found, doctors investigated whether they could insert Christopher's heart into his chest. However, they soon discovered the procedure would be impossible. There simply was no room in his chest cavity or a breast bone to support and enclose the heart. Because most children with this condition survive only a matter of days after birth, Christopher's next 18 months were nothing short of a miracle. During that time, 15 surgical attempts were made to build an artificial breast bone and place his heart into an anatomically correct position, reports ABC News. However, because Christopher's heart had been put through the stress of more than a dozen surgeries, doctors were concerned that it would not be able to recover from even one more. They were forced to cover the heart with skin to allow the chest cavity to grow. Three years later, Christopher was still a patient at the Children's Hospital of Philadelphia. It wasn't until shortly before his third birthday that he was finally able to go home for the first time. For his parents, Christopher's homecoming meant learning how to pound on his back every four hours, 24 hours a day, to drain mucous from his lungs, clear his throat and check for infection, according to People magazine. In addition, they were taught how to properly perform CPR if his respirator failed. Although he was home and no longer in the hospital, Christopher was still tethered to his respirator due to the weakness of his lungs. It took doctors three years and 21 surgeries to finally create enough chest support for his lungs by removing a portion of Christopher's hip bone and transplanting it into his chest to serve as a breast bone, according to ABC News. At six years old, he was finally free to breathe on his own. Today, Christopher's heart can be seen beating through his chest. While he may still suffer from hearing loss and a learning disability due to the operations he endured as a child, he not only holds the Guinness World Record for the oldest living person with ectopia cordis but he also has been able to live an active life thanks to a specially-made plastic breast plate he wears under his clothes to protect his heart. Through all the challenges, Christopher's family is grateful for every day. "We've learned so much from Christopher -- patience, love of life. Every day we're with him is a thrill," his father tells People magazine.