4. SIAMESE TWINS
Joey Lakeberg learned when she was five months pregnant that her twins would not be normal. The two girls were joined at the chest, and they shared a single liver and a single heart. The heart had six chambers instead of the usual four.
The babies?Angela and Amy?were born on June 29, 1993, at Loyola University Chicago Medical Center. They were immediately put on a respirator, because their conjoined chests made it impossible for their lungs to work properly.
The medical staff advised the Lakebergs that there was little chance that the twins could be separated and survive. In the 900 years since the first known set of Siamese twins was born, doctors have attempted to separate 190 pairs. In the nine cases in which twins were attached in exactly the way Angela and Amy were attached, no twin lived more than three months after the operation.
But Mrs. Lakeberg said that she "could not live with herself if she did not at least try to save one life." And, so, despite the advice of the medical team, the twins were transferred to a hospital in Philadelphia where doctors were willing to try a separation. The twins were almost two months old at the time of the operation. The plan was to try to save Angela and let Amy die.
The operation took five hours, and Amy died when her blood supply was cut off. Angela lived eleven months, thereby holding the record for the longest survivor of a separation of this type. But, Angela never left the hospital, and most of the time she was linked to a breathing device that was similar to an iron lung.
The nurses and other members of the staff became her family: they cared for her, held her, played with her. Her mother only held her three times during her life, her father did not hold her at all. In fact, her father was in jail for seven of the eleven months that Angela was alive. He was an alcoholic and drug abuser, thief (he stole a truck), ruffian (he stabbed his cousin and even got into a fist fight at Amy's funeral), and parole violator. He used money that people had sent to the twins to buy himself a truck and drugs.
- Time, 1993, August 30, 142(9):43-44.
- Time, 1994, June 27, 143(26):61-62.
- Hastings Center Report 1996, Jul-Aug:4-12.
- NY Times, 1997, December 23, C1.
- NY Times, 1997, October 17: E1.
Students should understand the following:
- Aberrant embryological development that results in conjoined twins
- What defines conjoined twins
- Criteria used to determine if surgery is a possibility, and what outcomes can be expected
- Basic philosophical principles for determining "the right thing to do"
- The role of the media and the "spotlight" in the Lakeberg case and particularly how they affected the negotiations among the doctors and the parents
- The effects of family dynamics on decision making
Suggested questions for discussion
- Do you think that a record of nine unsuccessful attempts at separating Siamese twins is enough to establish that such an operation could never be successful?
- Some critics said that the decision to put the twins on the respirator "sentenced" Angela to life. They argue that, by putting the twins on the respirator, it was then not possible to halt the process, even though medical opinion held that the twins or even one twin could never survive off the respirator. Should this first step have been more fully evaluated before it was taken or do you think it was the right first step to take in the Lakeberg's case?
- If you were confronted with a situation like this one, would you opt, as Mrs. Lakeberg did, to try desperate measures to save one life or would you let nature take its course, as others advised her to do?
- The Lakebergs lived in a trailer and had financial and marital problems. Do you think the instability of the Lakeberg home should have been taken into account when the decision was made to try to save Angela? Would this home environment have been adequate to meet Angela's (perhaps heavy) medical needs had she been able to leave the hospital? When, if ever, do you think it is appropriate for medical decisions to be made for nonmedical reasons?
- One of the TV networks handed Mr. Lakeberg money and a video camera and asked him to take pictures of the twins in the NICU. Then they showed the footage nationwide. One analyst holds that this media attention put the doctors and the hospital on the spot and stopped the doctors from sticking to their plan not to operate on the twins. Do you think the media attention was helpful or harmful for the twins?
- Do doctors have an ethical obligation to try to save every baby?
- Were the words and the actions of the medical team inconsistent? That is, the team advised the Lakebergs that the babies could not survive but immediately put them on a respirator. What was wrong here? Should they have spoken differently or acted differently?
- Should the money?estimated at around one million dollars?spent on the operation and on Angela's post-operative care have been spent instead on other babies who had a better chance of survival?
- Not all parents of Siamese twins opt for separation. Reference 4 above describes Siamese twins who are now 36 years old. How does the description of their lives affect your thinking about Siamese twins and the lives they lead?
- Would you make different decisions for Siamese twins whose brains are normal than for those whose brains are not?
Topics for discussion/written assessment
- How does the initial use of a technological intervention (e.g. the use of a respirator) affect the continuing use of that or other machines? Does that first step necessarily make continued interventions the natural course? If so, why? If not, what criteria/factors determine "enough?"
- For any type of very sophisticated medical intervention, what familial, economic, and social factors ought to be weighed in deciding if the patient is an appropriate candidate for intervention? What other types of factors could play into the decision?
- What should policymakers (both in medical institutions and legislative bodies) consider when choosing to use resources for sophisticated interventions? (For example, how do policymakers justify the allocation of $500,000 in post-operative care for a separated conjoined twin when many children in the United States do not get basic vaccinations that cost approximately $260 per child?)
- What types of data do surgeons consider when they try to determine if conjoined twins can successfully be separated?
- The most famous set of Siamese twins and the ones who gave the condition its name are Chang and Eng. They lived to age 65, were married to two women, alternated living with one wife or the other, had 22 children, and died within five minutes of each other. Find out more about their lives.
Topics for teacher preparation
- The biology of twinning
- The biological causes and development of conjoined twins
- The rates of occurrence of conjoined twins
- Other cases of Siamese twins
- The costs of caring for conjoined twins
- Social issues associated with twins