Academic journal article The Hastings Center Report

The Ethics of Caring for Cojoined Twins: The Lakeberg Twins

Academic journal article The Hastings Center Report

The Ethics of Caring for Cojoined Twins: The Lakeberg Twins

Article excerpt

The ethical problems associated with caring for conjoined twins are perplexing and complicated. They involve questions of medical and clinical uncertainty as well as problems ranging from the role of the family in decisions for impaired newborns to issues of social justice. Because these births are extremely uncommon, medical and ethical discussion about the care of conjoined twins rarely takes place.

Conjoined twins have always fascinated the public. They are exceedingly rare, with an incidence of about one in 250,000 live births. Sixty percent are stillborn. They can be joined at the head, chest, abdomen, or hip. Though the majority (70 percent) are females, the most famous so-called Siamese twins were Chang and Eng Bunker, who lived to the age of sixty-three and died within five minutes of each other. They fathered twenty-two children between them. Since 1100 A.D., when the first conjoined twins were recorded in England, there have been 190 attempts to separate the various types.

The Lakeberg twins were born on 29 June 1993 at Loyola University Chicago Medical Center. The family and twins' plight became the focus of national media attention from duly 1993 to 9 June 1994, when the surviving twin, Angela, died shy of her first birthday. She became the longest living survivor after surgery of this type of conjoined twinning. The ethical questions about their care and the decision to separate them persist.

The Lakeberg Twins

Mrs. Lakeberg, a twenty-four-year-old white female, was sixteen weeks into her second pregnancy when an ultrasound examination revealed twins joined at the chest, prompting referral to Loyola's Perinatal Center. The parents had a healthy five-year-old daughter. There was no family history of congenital anomalies or twinning. Ultrasound evaluations demonstrated a common six-chamber heart and one liver. No other obvious anomalies of either of the twin's heads or extremities were noted.

At seventeen weeks, the perinatal staff told the Lakebergs that if the pregnancy was brought to term, there was a very significant likelihood that both twins would die. The mother considered other options, but eventually the Lakebergs decided to carry the pregnancy to term. The babies, named Amy and Angela, were born at thirty-seven weeks gestation by caesarean section. Their initial combined weight was 4,200 grams. The Apgar scores for both twins were normal for their gestational age at birth.

The initial workup confirmed that the twins shared one common complex six-chambered heart and one liver, although there were separate lungs, kidneys, and GI tracts. They had normal brains. The babies became ventilator dependent by six hours of life. The way in which the chest was joined did not allow full inspiration and expiration, resulting in respiratory failure. They remained stable on the ventilator for the first three weeks. This stability was critical in deciding to proceed with catheterization and to define their complex anatomy.

Preoperative Discussions

The first ethical dilemma came at six hours of life when the twins were placed on the respirator. The question was what the goal of treatment would be. Would either or both ever live off the respirator once it had been started? Should the intubation be seen as a temporary measure for stabilization until a complete workup was performed and then later withdrawn after the dismal prognosis was confirmed? Why start it at all if the twins were not going to be separated? Should it be used if the likelihood of living without it would be almost zero?

At eleven days the twins were still ventilator dependent. Critics later said that at this very point we "sentenced" Angela to life. What was meant by this claim was that neither twin, even when separated, would ever live off a respirator and oxygen, and that this kind of life arguably might be worse than death.

An ethics consultation meeting was held to discuss the medical and ethical issues. …

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