The twins decision: One must die so one can live Reprinted witl, permission from tf?e Pflifadefphia Inquirer Sunday, October 16, 1977 The twins decision: One must die so one can live At Children's Hospital, a surgical team separates the Siamese twins, who were joined at the heart The surgery: An agonizing choice Parmts, doctors, ra,bbis By Donald C. Drake ,,rau,rer fifedErr 1rritnr It was a very low-key press confer- ence, and only half a dozen reporters had come out to hear the doctors tell how they had just separated Siamese twins. Sitting behmd a long table on the stage of a mostly. empty auditorium, the doctors explained that one of the girls had died because the twins together had only one-and-a-half hearts. Some questions were asked, and then the conference was over - an anticlimactic ending to one of the most Intense dramas ever played out at Philadelphia's world-famous Children's Hospital. No one in the audience realized it, but the operation had probably pro- voked more debate, more soul-search- ing on the part of the staff and more concern about the law than any other surgery at Children's in recent years. At issue was one painful fact: The surgeons knew that in an at- tempt to save one of the twins they would have to kill the other. The one-and-a-half hearts were strong enough to support only one child. Thus the doctors knew that one twin would die soon anyway, and that without the surgery this would lead to the death of her sister. During the weeks preceding sur- gery: o Several rabbis and other learned men met four to five hours every night for 11 days discussing the ethical issues. The parents, who are deeply religinus Jews, refused to allow surgery without rabbinical sup- port. o Nurses and doctors at Children's brooded about the certain death of one of the twins. A few. refused to participate. o Dr. C. Everett Koop, the hos- pital's ihlef of surgery, was so con- cerned about being prosecilted for ;-f:-emeditated murder tbat he ob- tained a court order for protection. For all, It was a time of the most intense self-exammation. No other surgery could more dramatically ,lemonstrate the growing number of noral and ethical dilemmas con- `ranting the medical profession as science extends its control over life Ind death. B:rn only hours earlier at a distant :lmmunit)r hospital in New Jersey, le twms looked surprising!y strong nen lhey arrived by helicopter Sept. They were joined at the chest, and `ley seemed to be hugging each oih- r w1t.h their wizened, newborn faces thy a few inches apart. Their res- ,ration rate and their color were Tmparatively good, indicating that +eir blood was getting adequate uygen. But Dr. Paul Weinberg, a cardi- rll,sgi?t summoned from home late at ..iaht, knew that something was des- .Wrately wrong the moment he look- -d at the twins' electrocardiogram + ERG) and listened to their chests with a stethoscope. 0n.e heartbeat He could hear only one heartbeat. Anti the EKG tracing suggested that there was only one heart. Special X-ray studies the next day howed that the twin designated as %by Girl B had an essentially nor- :nal. four-chambered heart that was `.lsed to the stunted two-chamber ireart of her sister, Baby Giri A. The hearts were joined along the walls of the left ventricles, the main pumping chambers that push the blood through the body. The connecting wall was only one- tenth of an inch thick-far too thin to be neatly divided in order to give each twin what belonged to her. And even if this were possible, the ctunted heart of Baby Girl A would not be able to support the child for Inng. `The doctors felt that they could not leave the babies the way they were either. They knew it WOUND be nnty a matter of time before +ho in dilemma overworked 1% hearts wctuld start tir fail, killing both babies. NO twms loined at the heart like this had ever lived more than nine months. But separating the twins was a job fc,r the surgeons, not a cardiologist. Dr. Kaop is a large man with a Lincolnesque beard and the domi- nating bearing of an Army general. He also has unique qualifications to deal with the medical and ethical dilemmas posed by the twins' lethal union. Twice befare he had separated twins--a rare operation few pedi- atric surgeons do even once -but neither case involved a shared heart. Moreover, Dr. Koop, a Presbyterian, IS a deeply religious man who has Yequently spoken out nationally about the sanctity of human life. The growing publfc acceptance of abortion is a source of outrage to Dr. Koop, and he is concerned about the growing trend in medicine to let, or even help, defective newborns die. In a speech to the American Acad- emy of Pediatrics entitled "The Slide to Auschwitz," Dr. Koop said: "Perhaps more than the law, I fear the attitude of our profession in sanc- tioning infanticide and in moving inexorably down the road from abor- tion to infanticide, to the destruction of a chrld who is socially embarrass- ing, to you-name-it.n It was ironic that such a maa should be called upon to do this oper- ation - an operation that would, with certainty, leave one child dead. But as soon as he examined the twins, Dr. Koop knew that had to be done. Without waiting, he placed a call to the twins' father and arranged a meeting. The twins had been born to a deeply religious, Orthodox Jewish family of rabbinical scholars. The fa- ther himself is a rabbinical student to whom nothing matters more - not even life itself - than God, the teachings of his religion and biblical ethics. One axiom of biblical ethics is the infinite worth of human life. A difficult question Since this ethic implies that all human life is equal - that one life is worth no more or less than another - would he consider it moral to kill Baby Girl A so that Baby Girl B could live? This was much too difficult and im- portant a question For the young rab- binical scholar, only in his early 20% to try to answer on his own, so he consulted the rabbis in his commu- nitv and the rabbis in his and his wiiee's families. Soon Rabbi Moshe Feinstein, dean of Tifererh Jerusalem seminary in New York City, was called in. The S&year-old Rabbi Feinstein has for many vears served as final arbiter in questions of Jewish law and ethics. Scholars throughout the world have sought his counsel in ethi- cal dilemmas. I& written responses to these questions are periodically printed in a series of books entitled "The Letters of Moshe" to guide all JPh?s. No less a man could be called upon to try to solve the dilemma con- fronting the parents of the rwins. SO Rabbi Feinstein agreed to consider the question. Word spread through Children's Hospital that surgeons were planning to sacrifice one of the Siamese twins. The ho.wital had said little, SO the rumors were sometimes inaccurate. i~#s. Jan'e Barnsteiner, who is Catho!ic and the associate director ,?or clinical nursing, was asked about the twins bv head nurses as she went about `the hospital each day on her rounds. The Catholic nurses, of whom there are man:], were particularlv con- cerned' that the surgeons might be doing something that violated the teachings of thmeir church. The word "sacrifice" was used SO much by the nurses in discussing the matter that Mrs. Barnsteiner herself became concerned and de- cided to consult a priest. .4t the same time, the nurses in the operating room were becoming particularly uneasv because they knew that they would be called upon to ,participate in the surgery, if it took place. Winifred Betsch, assistant director of the operating room complex, was also conculted by her nursks. Odd as it might seem, operating room nurses rarely witness death - only two or three of the 5,700 patients onerated on each year at Children's Hnspita! die in the operating room. X?ediL:i:le has developed such effec- tive life-ynpport systems that doctors are almost always able to get the patient at least to the intensive care unit. So the nurses were very disturbed by the prospects of beginning surgery in which it was already known beforehand that one of the patients would be taken out of the room dead. Miss Betsch said that she would consult a priest. A Catholic herself, she would not want to participate in the surgery if it went against her churah. The ttin's father and rabbis met with Dr. Koop on Sept. 20. And then, three days later the rabbis met agai,n witi Dr. Koop, but tiis time alone. Rabbi Feinstein did not, himself, attend the conferences but instead sent his son-in-law, Rabbi M. D. Ten- dler, a noted Jewish authority on medical ethics, a professor of Tal- mudic law and chairman of the de- partment of biology at Yeshiva Uni- versity in New York. One or two lives? Time and again Rabbi Tendler put the same question to Dr. Koop in dif- ferent ways because the answer would be so important to the rabbini- cal discussion that would ensue. Are the twins one baby or two ba- bies? If rhe twins were only one baby with two heads, then it would be ethi- cal to remove Baby A as an uruneces- sary appendage. If there were two babies with dis- tinct nervous systems, however, then that would require more scholarly discussion. Each time Rabbi Tendler asked the question in a different way, Dr. Koop would come back witi the same une- quivocal reply: With the exception of the chest con- nection at which @heir livers were joined, as well as their hearts, the girls were separate human beings with their own separate brains and nervous systems. 10 fact, the nurses in the intensive care unit, who were quickly develop- ing affection for rhe twins, could see their different personalities develop- ing even at this early ag. Baby Girl B was much more con- tented and calm. Baby Girl A tended to be irritable. But they were both alert and made eye contact when someone ca.me near. Dr. Koop told the rabbis he felt strongly that the twins should be sep- arated and las soon as possible be- cause the hearts could fail at any moment. He said, however, that be would not seek a court order to force the parents to agree, because the chances of saving both babies, even with surgery, were very slim. Only a h.alf-dozen times before, as far as was known, had Siamese twins been connected wirh their hearts fused like this. So far, none of the ba- bies separated has survived for more than a few days. But with surgery, there was at least a theoretical chance of saving one of them. Without surgery there was no hope at all. The rabbis listened and said they understood. They were impressed by this big doctor with the beard, sur- prised bv his knowledge of the Bible and medical ethics. They had not expected to Find a surgeon who read the Bible before work every morning. It was getting late and it was Fri- day. The rabbis wanted to get home before sundown, the beginning of the Sabbath. So they got up and said good-by, saying they would discuss the matter and make their decision as soon as possible. The surgeons, cardiologists and other medical people were not at all happy about the prospect of delaying surgery any longer than necessary. It would take several days, if not weeks, to get together the complex surgical team, do the necessary preoperative tests and make the other plans. Concerned that the babies might take a sudden turn for the worse, Dr. Koop ordered elaborate planning for the operation, even though the par- ents had not agreed to it. If the parents should say no, noth- ing but professional time would be lost. But if the babies' health should suddenly fail, at least the team would be ready to move immediately if the parents approved. Dr. Henry L. Edmunds Jr., chair- man of the section on cardiothoracic surgery, was uneasy about all the un- knowns in the case, and he said so when the 20 doctors and nurses as- sembled in the third-floor meeting room on Sept. 30 after many infor- mal conferences in the past several days. When a surgeon prepares to do heart surgery, he usually has a fairly good idea at least of what the heart will look like. But Dr. Edmunds had no idea what he would find. Dr. Weinberg's slpecial X-ray mov- ies showed only parts of the heart chambers and little about how much blood was going into the heart mus- cle - viatl iaformation Dr. Ed- munds would need before he dared tie off any blood vessels. Because it would be too dangerous to sever the heart of Baby B from the heart fragment of Baby t\, Dr. Edmunds decided to put all six chambers into Baby B's chest. Dr. Edmunds is the type of surgeon who feels uncomfortable unless he has all the facts, and in the case he faced a wealth of unknowns. The unknowns Would Baby B's chest be large enough to accommodate such a large heart? What would happen when Dr. Ed- munds cut the section from Baby A off from its natural circulatory Sys- tem? Would it die, like a gangrenous leg without a blood supply? Or would it be nourished by Baby JYs circula- tion through some unknown circula- tory connection? And what about the electrical con- duction that caused the heart to beat? Cutting the A heart section off from its natural nervous system might cause it to beat wildly, throw- ing the B heart into a lethal condition called fibrillation. Dr. Koop shared Dr. Edmunds' concern about the chest cavity being too small. Last summer he had been consulted on a similar Siamese twin case in Switzerland in wh'ich the chest appeared to have been closed too tightly to allow the six-chamber heart to beat unimpeded. The res- cued twin died shortly after surgery. Dr. Koop told Dr. Edmunds, how- ever, that he thought they could solve the problem by surgically building a large enough chest cavity, using the ribs of Baby A as grafts if necessary. There were other concerns of equal importance, and they all were exa- mined at the meeting. Dr. Weinberg tried to describe to the doctors all that be knew about * the heart from his X-rays. He used a colored, clay model he' had con- structed as a visual aid. Pointing to the model, he said he thought Baby B's circulation was partly supplying the stunted heart of Baby A by passing through a hole be- tween the ventricles where the two hearts touched. This blood from Baby B might be enough to nourish the muscles of Baby A's section of the heart, keeping it healthy. If so, this would make it possible to cut the heart off from Baby A's circulatory system and give Baby B a healthy six-chamber heart. But he could not be certain. More x-rav studies, called arrgiog- raphy, in wfiich dyes are injected di- rectly into the heart's chambers, would be needed. Dr. Weinberg would also find out, if possible, more about the coronary arteries feeding the 1% hearts. Dr. Edmunds would need to understand this clearly in case he had to graft vessels from the coronaries of the B heart to the A section to provide an extra blood supply. Two pediatric anesthesiologists, Drs. John J. Downes and Russell Raphaely, were worried because the twins' airways were of a con- figugration that would make it dif- ficult to insert anesthesia tubes. The anethesiologists were con- cerned also about the surgeons' plan to turn the babies over durinrg sur- gery to get `at both sides. This would make it difficult to keep the 13 blood monitoring lines and tubes connected to the twins from getting tangled up. The meetina ended at 5 o.m. They wouib need timk for Dr. Weiaberg to IUI his studies and for more planning sessions. Dr. Koop tentatively decided to do the surgery in 11 days. That would be Oct. 11. Eleven days would be ample time to finish the medical preparations. But would that be enough time for the rabbinical scholars to complete their meditations? On Oct. 3, the intensive care unit nurse assigned to tie twins noticed changes in the heart rate, respiration and electrocardiograph tracings to suggest that Baby Girl A might be going into heart failure. This was an ominous sign - one that the cardiologists ;lad been pre- dicting would come eventualIy and one that everyone hlad been dreading. The nurse summoned the physician on duty and the decision was m,ade to start administering digitalis, a drug used to strengthen heart activity. Because of the strange physiology of the heart, the doctors could not be certain rhat the twin was in heart fai- lure, but the signs were disturbing enough to justify the drug. Dr. Koop was notified of the change in the twins' condition. He did not think it serious enough to put the surgical team on alert. The rabbi cdZs Besides, he still bad heard not'hing from the twins' parents or the rab- binical scholars. The only contact since rheir meeting the week before had been a telephone call from Rabbi Tendler. who asked two somswhcat odd questions. If the surgeons wanted to, Dr. Ten- dler asked, could they give the six- chambered heart to Baby A instead of Baby B? Dr. Koop could not understand why he was being asked +lch a question, but he told them no. The circulatory system was set up in such a way that the transfer could be made only to Baby B. Then Rabbi Ten&r asked whether Dr. Koop was certain that Baby Girt B would also die, even with the sur- gery. Dr. Koop said that Baby B prob- ably would die regardless of what was done, but that it was not a certainty. Rabbi Tendler thanked Dr. Koop for the information, said that they hoped to make a decision shortly and then hung up without explaining the reasons for the questicns or where the rabbis stood. Dr. Koop held three meetings with the nurses and other personnel dur- ing tihe week to offset the growing concern about the surgery. Many of the nurses who attended tie meetings were from the operat- ing rooms. At each session Dr. Koop described how both babies were doomed if not;hing was done alnd how there was a remote possibility of saving at least one if surgery was attempted. Since Baby A was being kept alive through the extra work being done by Baby B's heart, he viewed Baby A as a burden - even a parasite - and as such it was morally right to save Baby B by removing the parasite. The nurses were pensive at these meetings, but they did not seem out- raged or disapproving, especially after Dr. Koop got through his expla- nation. Most of ahe questions were techni- cal rather than ethical. Dr. Koop said they asked him what could be done if the twins started to die before surgery could begin. They also asked whether the child's chest would be normal after surgery, and whether there would be closed-circuit television to show the operation to the hospital staff, as there was in 1974, when Dr. Koop separated twins born in The Dominican Republic. Only one person - an operating room nurse - confronted Dr. Koop with the difficult question: "How do you feel," she asked, sternly looking at him, "as a Chris- tian and a doctor, to do an operation like the one you're planning?" Dr. Koop stared back at the woman just as sternly and, after thinking for a moment, replied with a low, measured voice. "I can watch two babies die slowly over the course of several months," he said, "or I can watch one die swiftly and the other possibly live." The nurse did not seem satisfied, so Dr. Koop continued. "No one likes to say `I'm going to kill one baby so that the other can live.' " Dr. Koop finished the meeting, which was attended by about 20 nurses, checked on the twins' condi- tion and found that they seemed stronger. Then he met with a lawyer from the firm of Dechert, Price 8~ Rhoads. His concern Dr. Koop was becoming increas- ingly worried that he might be prose- cuted for premeditated murder. It was not a farfetched concern; under Pennsylvania law any citizen can bring a criminal complaint. and any number of legal agencies on the city, state and federal levels could decide to respond. Dr. Koop said he did not seek pro- tection from a civil ,malpractice suit. He was convinced that the parents were not the kind of people to sue after giving permission to do the sur- w-y But he was concerned about a criminal action and said fIatly that he would not do the surgery without adequate legal protection. It was a difficult legal question thalt would in- volve time-consuming searches for legal precedent. Time was short, so Rechert, Price & Rhoads immediately assigned four lawyers to the case. The rabbis had been discussi~ng the twins for almost a week. Rabbi Fein- stein had even moved into the house of his son-Saw, Rabbi Tendler, for tie duration of tie discourse. Every night after dinner he would meet with Rabbi Bndler and his three sons - one a physician and rabbi and the other two rabbinical students - to discuss ethics. Speaking only Yiddish or Hebrew, they would talk late into the night un- til they reached an agreement. As soon as this happened, one of them would take the opposite position and they would turn around and argue or discuss in that direction. "Two men jump out of a burning ariplanc," Rabbi Tendler said in one Large medical team and a vast array of apparatus were required for the operation dbcussion, using an analogy, "The parachute of tihe fir.st man opens and he falls slowiy and safely to earth. "The parachute of the second man does not open. As he plunges past his friend, he ma,mges to grab onto his foot and hold on. But the parachute is too small to support both of them. Now bhey aare both plunging to their death. "It is morally jmtified," Rabbi Tendier concludes, "for the first man to kick his friend away because they would both die if ihe didn't, and it was the first man who was desig- mted for death since it was his para- chute that didn't open." Another andogy "Ah, yes," replies Dr. YRCOV Ten- dler, the son who is a rabbi and phy- sician. "Rut take the case of tie baby who is being born. Something goes wrong iust as the babv's head come.s crut of the vagina. It `is stuck and the baby cannot be pulled out. "The choic- would be to either kill the baby and dismember jt to get it out of the mother's body, or let them battle it out to se-e who wins. Biblical erhics demands that you take a hands-off policy. You have two human beings in conflict with each orher. Neither is guilty of a crime. You have no right to select the life of one over the other. "It is only in tie unique situation in which the child is in the uterine world. tutally dependent on the mother for sustenance, that the moth- er's !ife takes precedence over the fetus. "In the case of the twins," Dr. Yacov Tendler argues, "you have a situation where both heads have come into the world, each one mak- ing an independent claim to life. >'OU have no ri&t to forfeit one for the other." ,411 of the heads in the room nod solemnlv, then a third person speaks. "But then there is the case of the caravan surrounded by bandits. If nhe bandits demand that the caravan surrender a hostage for execution or else everyone would be killed, it would be wrong to sacrifice someone. "But on the other hand, if the ban- dits named a particular member of the caravan, it wfiuld be nioitally justified to give up this person be- oause he had been designated for dea?h and then it would be f&i.& to give up the lives of all along rrlit?i the life of the one designated for death. So iZ is with the twin who has been designated for death "Bat wait!" insists one of the oth- ers in the room. "Has one of #e twins been designated for death?"' And so a phone call is placed to Dr. Koop. "Could Baby A survive if the hart was given to her? Is Baby B also iesignated for certain death or ti here a possibility - remote oW& t might be - that Baby B ? cou d m- dive with surgery?' The word had come down indepen- jently from different Capholic priests :hat the surgery would be ethical .mder chur:ch baw, and Mrs. Barn- ;teiner and Miss Betsch passed the Arord to the wrses under them. "God expects us to act where we Dan act," concluded one priest, the Rev. Francis C. Meehan, associate professor of moral theology at the Seminary of St. Chlarles Borromeo in Overbrook. "Not to choose is to choose to allow both of the babies to die," Father Meehan told the nurses. "It was not the doctors who would be killifig the baby, because they would save the girl if they could, but the terminal event that had already started for her. Death may come sooner -- not because they chose it for the child but as an indirect result of th& at- tempt to save the other child." Father Meehan's words and those of the other priests were reassuring, but as the time approached for SW gery rhree anesthesiologirrts and two Catholic nurses asked not to be put on the case. Six of the seven nurses who would participate in the surgery, i@u+g ~~`lietsch, however, wo& be On Oct. 6, only five days before surgery was scheduled, word reached Dr. Koop that the rabbis had finished their deliberations. They were in favor of the surgery. The father had agreed to it. The body of Baby Girl A, however, would have to be returned home for buriai before sundown on the day of surgery. Dr. Koop gave assurauce that this would be arranged. The final planning session came an Oct. 7. The new X-ray studies by Dr. Weinberg indicated that holes of un- known size did connect the left ventri- cle in Baby Girl B with the left ven- tricle in Baby Girl A. This suggested the possibility that Baby Girl B's cir- culation might be able to susttiu this section of heart. Dr. Weinberg had also been able to obtain the preserved specimen of a similar, six-chamber heant that, had been flown down from Harvard Uni- versity. Dr. Edmunds spent several hours with the specimen, examining how the heart chambers were conneca and where the blood vessels fed into the muscle. During surgery, he would not have time to examine the throbbing heart of the twins. He might have to make quick decisions under much pressura, so he wanted to know as much as possible beforehand. The most important tactical ques- tion confronting the surgeons was when to cut off the circillation of Baby Girl A. This would immediately kill the child and possibly threaten the heart. No one knew how the heart would respond to the sudden drop in the vo- lume of fluid it must push and to the ~CLSS of the entire circulatory system of Baby A. I%,-Edmunds wanted to cut off the blood sltpply of Baby A from the cir- culation system of Baby B as soon as / possible during surgery. This would kill Baby A, but it would also protect Baby B's heart from the poisons that would start pouring into the blood the (moment Baby A's tissue started to die. When tissue dies, it releases lactic acid and potassium into the blood. These hiochemicals shut down the heart if they reach sufficiently large concentrations. The surgeons decided to simultane- ously tie off the carotid artery and the jugular vein, which take blood to and from the brain, t&e vena cavae, which supply the top and bottom parts of the body, and the aorta, the principal artery from the heart. When they did this, would the heart start beating wildly and inef- fectively in the lethal frenzy of fiibril- lation?. Or would it adapt quickly w&hour any threat to Baby B? The surgeons would find out on Tuesday, Oct. 11. Former District Attorney Arlen Spectm, who represented the hospital in t&e case, felt that the only way to insu!re adequate protection for Dr. Koop was to get a court order au- thorizing him to do the surgery. Similar position8 A three-judge panel of the Family Court bard Dr. Koop and the law- yers wesent their arguments in an empty courtroom on C&t. 10, which was Columbus Day, a holiday when g,bu;~~~g would otherwise have The. argiments presepted by the lawyers were surprisingly similar to the positions taken by tie rabbis dur- ing t&t. 11 days of discourse. Common law in Pennsylvania states that death comes after the heart stops, the lawyers argued. Since there is only one complete heart, the twins constituted one per- son and to remove one would be only to remove an appendage, like a gan,greacus leg. The judges dismissed this attempt at logic, which probably was just as well as far as the lawyers were con- cerned, since modern medicine tends io define death as the cessation ot brain ratirer than cardiac actiLitp. The lal.vyers then went to their sec- ri:ld line of reasoning and judicial precedent, which said that what might appear to be a crime is not a crime if a court rules that the good outweighs the bad and accordingly hands down a court order. Because there is greater good served by saving one child instead of iosing both of them, the court would be justitied in issuing such an order, the lawyers insisted. Then they cited a legal treatise on two mountain climbers, a survival story almost identical in principle to Rabbi Tendler's analogy about the parachute-jumpers: A mountain climber who falls from his perch is saved from instant death by a rope attached to a partner who has a more secure hold. Rut the hold is not so secure that he can keep both himself and his friend from plunging to their dea!hs. Because under such circumstances both would die, the climber with the more secure hold would be justified in cutting the rope. The court apparently agreed with this logic. After a few minutes of de- liberation it authorized Dr. Koop to proceed with the surgery. It was scheduled to begin at 6 a.m. the next day. It was a cold, black morning and the sun had not yet risen. The streets outside Children's Hospita! were des- erted and quiet. It was still too early for the bustle of traffic. Inside the hospital, brightly lit Op- erating Room Three was hectic with the activity of a dozen people prepar- ing the room for surgery. At 6:OS a voice yelled out, "They're here." All faces turned to see a white-coated aide wheel in an isolette from the intensive care unit. It contained the twins. Tears in the hallway It had been an emotional parting from the intensive care units. Several :~f the nurses touched the twins and