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Lots of fascinating moral, ethical, and medical issues involved here. Like most American women who give birth to a severely handicapped child, Donna Branca became pregnant with A.J. well before the age of 35. Had she been older, her doctors would almost certainly have recommended amniocentesis to screen for genetic disorders. But she was 31, so they did not, despite the fact that she had an unusual pregnancy. Branca bled during her first trimester, a possible indication of birth defects, and at her midterm sonogram, when she was 20 weeks pregnant, her fetus looked smaller than it should have based on when her doctors originally presumed she conceived. Branca had not gained much weight, either, but her doctors — whom she is barred from identifying, by a legal settlement — saw no cause for alarm. "Looking back now, of course, it's easy to say I should have asked more questions or maybe been a little more concerned," she told me last fall, sitting in her grassy backyard in Orangeburg, 20 miles north of Manhattan. Branca is a pretty woman, dark and compact, with a winning suburban New York accent. She glanced at A. J., a 6-year-old with a head of dark curls and the mental capacity of a 6-month-old. Her 3-year-old twins from a subsequent pregnancy ran around collecting acorns.
On April 22, 1999, when Branca was 28 weeks pregnant — four weeks past the legal window for terminating a pregnancy in New York — she saw her regular doctor (for what would be the last time) and was reassured that her baby was fine. But three weeks later, while on vacation on the Jersey Shore, Branca began to bleed again. Her husband, Anthony, drove her to the emergency room at Southern Ocean County Hospital in Manahawkin, N.J. Anthony Branca, like his wife, is compact and mild-mannered. When the obstetrician arrived, the doctor got out a tape and measured Donna's belly, a standard procedure to gauge a fetus's size. Although such measurements are a routine part of prenatal medicine and require only a few seconds, Donna had never had her belly measured. The obstetrician on duty that day asked Donna if she had had any prenatal care at all. Then he told her, based on his calculations, her fetus appeared to be only 24 weeks old, not 31.
An emergency sonogram confirmed that the fetus was indeed abnormally small, and an amniocentesis later performed at Westchester Medical Center in Valhalla, N.Y., revealed much worse news: Donna Branca's fetus had both a gene duplication and a gene deletion on his fourth chromosome. (It was not until after birth that it would became clear that her baby had Wolf-Hirschhorn syndrome, which commonly includes mental retardation, physical disfigurement, inability to speak, seizures and respiratory and digestive problems.) After two weeks of bed rest, during which doctors tried to delay labor, Donna delivered A.J. Branca on June 11, 1999, about six weeks before her due date. He was 15 inches long and weighed two and a half pounds, and he didn't cry when he came out. "One of the first things the attending doctor said to me," Donna told me, "was, 'It's not hereditary, so you should just have another child right away."'
What happened next — the years in which the Brancas came to love A.J. deeply and also to file a multimillion-dollar lawsuit claiming that Donna Branca's obstetrician's poor care deprived her of the right to abort him — sheds an uncomfortable light on contemporary expectations about childbearing and on how much control we believe we should have over the babies we give birth to. The technology of prenatal care has been shifting rapidly: sonograms became standard in the 80's; many new genetic tests became standard in the 90's. Our ethical responses to the information provided has been shifting as well. As in many other realms, from marriage and its definition to end-of-life issues, those ethics and standards are being hashed out in the courts, in one lawsuit after another. And what those cases are exposing is the relatively new belief that we should have a right to choose which babies come into the world. This belief is built upon two assumptions, both of which have emerged in the past 40 years. The first is the assumption that if we choose to take advantage of contemporary technology, major flaws in our fetus's health will be detected before birth. The second assumption, more controversial, is that we will be able to do something — namely, end the pregnancy — if those flaws suggest a parenting project we would rather not undertake. http://www.nytimes.com/2006/03/12/magazine/312wrongful.1.html?_r=2&oref=slogin&oref=login |
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