With pacemaker, tiny boy finds new lease on life

The doctors knew what they had to do to keep the newborn's heart beating, but they had never done it on a baby so small.

The boy, Angel Castaneda, was born one month early by caesarean section after doctors noticed that he had not grown in two weeks. His mother, Anna Castaneda, 28, of Providence, has lupus, a disease in which the immune system attacks the body.

The disease had begun to attack the baby's heart; doctors needed to implant a permanent pacemaker in the baby's tiny body to prevent his slowly beating heart from stopping.

On June 11, hours after Angel was born at Women and Infants Hospital in Providence, he was transferred to Children's Hospital Boston. He would become the smallest newborn to have had a permanent pacemaker implanted; at the operation the boy weighed just 2.2 pounds. His doctors say that he is the smallest baby ever to have had the procedure.

''We did what we had to do," said Dr. Mark Alexander, Angel's cardiologist at Children's Hospital.

The previous low-weight mark involved a baby at the University of Virginia Heart and Vascular Center, who weighed 2.8 pounds at birth, Alexander said. At Children's Hospital, the procedure had been performed on a few babies who had weighed about 3 pounds.

Implanting a pacemaker in a newborn is similar to the procedure done in adults, except that special considerations are made for the placement and size of the device that generates electrical impulses to the heart and to stimulate the muscle to beat regularly.

Normally, permanent pacemakers are implanted in the abdominal wall. But because Angel was so small, Alexander said, he returned to a technique used 30 years ago and implanted the device, which is about the size of a quarter, on his diaphragm, the only muscle large enough and strong enough to hold it.

Angel now weighs 3 pounds, and ''looks like he's doing pretty well," Alexander said.

The baby was transferred to Children's Hospital Boston hours after he was born so that he could get the care he needed immediately, and so that his mother could continue to be monitored close to home, Alexander said.

The hospital specializes in cardiac care for newborns. More than 1,000 cardiac operations are performed there for babies and adults born with heart trouble. Angel was transferred back to Women and Infants Hospital on July 4.

One morning a few days before he left, nurses buzzed around the incubator where Angel lay, tightly wrapped in several layers of clothing to keep him from getting cold, and bound to machines that monitored his blood pressure, breathing, and heart rate. His body looked tiny enough to fit snugly into a pair of loosely cupped hands.

Occasionally the infant raised his forearm as if waving, then moved it to cover his large dark eyes, as if he did not want to be bothered with the people crouching around him and disturbing his nap.

''He's a quiet, sweet baby," said Jen Clough, one of his nurses. ''He never makes any noise."

This experience is not new for Angel's family, who went through the same thing when Angel's older brother, Alex, experienced similar complications.

A permanent pacemaker was implanted in his abdominal wall three days after his birth, said Alexander, who also was Alex's cardiologist.

Though the family is financially strapped and worried about their newborn, Louis Morales, Angel's father, voiced confidence that Angel would grow to be a rambunctious toddler, just like his older brother.

Brother Alex ''runs around the house and climbs on things like nothing is wrong," Morales said in a telephone interview from the family's home in Providence. ''Then you lift up the shirt and see the scar."

There will be some limitations on the boys' lives, Alexander said, but they can still take part in regular activity, except certain sports that could damage the pacemaker.

''I am going to have to sit down with their teachers and tell them that they can't do this or can't do that," Morales said. ''I want them to get into music or art -- no contact sports. I am afraid that any impact will stop their hearts, even though I still have to worry about bullies."

The pacemakers, Alexander said, are robust enough to withstand roughhousing. The main stress, he added, will come from regular movements, such as reaching to grab something or moving the arms; such efforts make the heart beat faster and creates more wear on the pacemaker's battery.

''Small, daily movements will put more stress on the pacemaker than falling off the monkey bars," Alexander said.

Morales said that he was eager for Angel to be transferred to Women and Infants, which is closer to his job, and that he was amazed that doctors at Children's Hospital had been able to save his son with the procedure.

''I am so proud of the doctors and the staff," Morales said. ''When I look at my son, I just thank God for these people."