A generation ago, surgeons did not operate on children's hearts. Too little was known about the procedure, and there was doubt that a child with a serious heart ailment could withstand such major surgery.
Today, however, open heart surgery on children is commonplace. Children who would have died in another era now recover in a matter of weeks. At Children's Hospital, open heart surgery is performed on a child approximately every third day. Most of the time, the child recovers, the parents are eternally grateful and the surgeons are all smiles.
But sometimes the patient does not recover. How does that affect the surgeon? And how does it affect the way future heart surgery patients are treated at Children's Hospital?
To answer these and other questions, my associate, Michelle Hall, sat in on an open heart operation last month with the chief of such surgery at Children's. Later, they discussed the ethical and medical questions posed by heart surgery that doesn't work. Michelle's report:
It looked like just another anteroom. Walking in, outfitted in scrubs and mask, I was surprised to learn that I was already in the operating room. The anesthesiologist instructed me to step onto a foot stool and look over a blue curtain. Inches away was a human heart, laid bare for surgery. It belonged to a 5-month-old girl.
A real-life drama was going on before my eyes. Catching my breath, I said hello to Dr. Frank Midgley, the chief pediatric cardiovascular surgeon at Children's Hospital, who was performing open heart surgery.
The operation was fascinating: calm surgeon, deft assistants, vital signs flashing on monitors. And amid everything, a tiny body covered with surgical towels, lying still on the table.
Dr. Midgley and his surgical team were repairing a hole in the little girl's heart, which was preventing the proper flow of blood. The operation was her second. The first had removed a major obstruction from the aorta just beyond the point where the blood vessels lead to the brain. At the same time, a restricting band was put on the girl's pulmonary artery to limit the blood flow to her lungs and buy time until the hole in her heart could be repaired.
A couple of days later, I went back to talk with Dr. Midgley in his small office at the hospital. The face beneath the surgical mask proved care-worn; the eyes gentle. In a soft voice, he informed me that although the girl responded well to the surgery for the first few hours, an abnormality in the heart's rhythm developed, which caused the heart to pump ineffectively. The girl died the next morning.
"The initial human response is 'Geez, was it my fault? Did I do something wrong?' " Dr. Midgley said. " . . . Yes, you operated and that was the identifiable thing that caused the patient to die. That's not saying they weren't going to die anyhow. So that aspect of things doesn't give you much consolation.
"It is a very consuming thing in terms of one's psychic energy. And if we're talking about doing 125 procedures per year , even though the mortality is 6 percent, that still represents eight or nine patients that aren't surviving. And you don't think too much about the 119 that are. It's the six that don't, or the eight or 10 that don't, that you think of. And that serves as a stimulus to learn and do things differently, and research, and talk to people and go to meetings and see how other people do things -- to try to deal with things differently the next time.
"There's no question about it; there's a part of you that goes with every patient you lose. I like to think that there's also a stimulation to the part that remains to work all the harder to keep that from happening again. But it gets to you . . . ."
With the hospital's six staff cardiologists, Dr. Midgley developed a program that has made Children's a regional center for pediatric heart surgery. The mortality rate for heart patients under 1 year of age was a daunting 60 percent when Dr. Midgley came to Children's 10 years ago. It is now down to about 5 percent.
"So that keeps you going, in terms of the opportunity to be part of this," Dr. Midgley said. " . . . We press on and are continually realizing that, though we've got a long way to go, we've been a long way. And the program, we like to think, has been one of the five or 10 major ones in the country in terms of not only the quantity of work but the quality of work."
The program works this way:
Using models, Midgley shows each family the problem before surgery. He explains why there is a problem, what needs to be done, what would happen if it weren't taken care of and what risks are involved. Nurses reinforce the explanation by showing the family picture books and dolls, and visiting the Intensive Care Unit with them.
If a child does not survive surgery, the hospital forms a network of support for the family. According to Dr. Midgley, "Our team is particularly able to do this because of multiple contacts by the social workers, by the cardiologists, by the Intensive Care Unit. As often as not the letters come back -- 'Thank you for helping us' -- despite the outcome.
"Just because the patient doesn't survive doesn't mean the wrong decision was made," said Dr. Midgley. But although a doctor must accept that a certain percentage of his patients will not make it, "to a parent it's only 0% or 100%."
Dr. Midgley finds the rewards of the job great, however.
"A little Vietnamese boy went home today who had a major reconstruction last Thursday, and was blue beforehand. Was pink and happy and went home with a big smile. His father had him all primed this morning to say good-bye to me. This 5-year-old boy put out his hand and said, 'Thank you very much.' "
Dr. Midgley recounts the story with an appreciative laugh. "And that's worth a couple of weeks of staying up all night. A mother's smile and a crying little baby that stays pink with crying, and lots of things like that are signs of success from all our efforts."
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