They knew that Ari, who until 48 hours before had been a perfectly healthy 16-month-old, was brain dead, killed by some mysterious and sudden illness that shut down his metabolic system.
"Part of our reason for doing it was a sense that maybe something good could come out of this horrible thing," says Ullendorf of those wrenching days 12 years ago. "We also had a feeling that if somebody else had something of his, it was a way of keeping him more alive."
So they held Ari while he was still on a respirator and said goodbye to him. Then Rabbi Neil Gillman, a family friend, helped the young parents do kriyah, tear their clothing in the Jewish symbol that marks the onset of mourning.
He also assured them that donating Ari's organs was a mitzvah.
"We weren't sure what the Jewish position was, but our rabbi said if there was anything that could save a life, we should do it," says Ullendorf, who now has three healthy children.
Like many other Jews, Ullendorf had had a vague preconception that Judaism would not support organ donation. And yet the affirmation she received from her Conservative rabbi is the same answer she might have gotten from any rabbi -- Reform, Conservative or Orthodox.
While halachic debate still surrounds the donation of some organs, there is growing consensus that donating organs is not only permissible within Jewish law, but fulfills the positive imperative to save a life.
Several new educational initiatives have emerged in the Jewish community to spread that idea and to counter a very disturbing fact: The Jewish community has one of the lowest rates of organ donation among ethnic groups.
For despite rabbinic decisions, at a grassroots level, there persists in all segments of the Jewish community -- traditional and liberal -- a reluctance to discuss the topic, and an assumption that Judaism forbids organ donation.
An Urgent Need
Twelve people die every day waiting for an organ. There are currently about 68,500 people on the waiting list of the United Network of Organ Sharing, and that number is expected to quadruple in the next few years, according the Division of Transplantation of the federal government's Department of Health and Human Services, which sponsors National Organ and Tissue Donation Awareness Week the third week in April.
In 1998, about 5,800 people who died donated organs and tissue -- about a third of the number of potential donors. An additional 4,300 people were living donors, mostly of kidneys. One cadaver can supply a heart, kidneys, pancreas, lungs, liver, intestines, cornea, skin, bone marrow and connective tissue. Some of those on the waiting list can survive for several years without a transplant. Many will die waiting.
The situation has been particularly dire in Israel, where donation was chronically low, and Israel was consistently a net drain on the European organ sharing network, endangering the Jewish state's status in the network. Israelis have often had to travel abroad to procure organs.
The situation has recently taken a turn for the better, as several major rabbis, most recently Shas leader Rabbi Ovadia Yosef, declared it not only permissible but a mitzvah to make your organs available. Still, Israel's remains among the lowest rates of organ donation in developed countries.
Dignity of the Dead vs.
Saving a Life
Given the high stakes, what is holding the Jewish community back?
Partially, the same things that keep the number of organ donors so low in the general population.
"Part of it is people don't want to contemplate death altogether, and part of it is when they do contemplate death, they have trouble thinking of themselves minus some organs," says Rabbi Elliot Dorff, a bioethicist who is rector and professor of philosophy at the University of Judaism and chair of the Committee on Jewish law and Standards of the Conservative movement.
About five years ago, Dorff participated in an interreligious project that looked at the psychological, folklorist and literary issues that prevent people from making their organs available.
He said aside from a general aversion to death, what also came into play were people's fears of surgery and notions about resurrection.
According to many doctors and educators who deal with the issue, Jewish audiences -- of whatever denomination -- consistently bring up the idea that in order to be resurrected, one needs to have all her body parts.
Rabbi Eddie Reichman, a physician and professor at Yeshiva University's Albert Einstein College of Medicine in New York, says the idea stems from some obscure references in midrashic sources. But he points out that if one believes in resurrection, that must come with a belief that God will restore decomposed bodies.
At a panel on end-of-life issues at B'nai David-Judea Congregation a few months ago, Reichman countered with another midrashic idea.
"There is a rabbinic tradition that there is one bone called the luz bone from which resurrection will take place," he said, "so we will have a connection to the original body in which we lived. Rabbi Aryeh Kaplan has translated this midrash into contemporary understanding, saying one simply needs one strand of DNA."
But there is also more solid ground for the perception that Judaism would frown upon organ donation: the very real halachic concept of kavod hamet, preserving the dignity of the body that housed the departed soul.
Cadavers are treated with honor, so that modesty is retained even during the ritual washing. The body is never left alone, and it is buried as soon as possible. Every effort is usually made to bury a person with all her body parts, even amputated limbs or spilled blood.
It is no surprise, then, that harvesting organs would seem to violate these precepts.
But everyone involved in the halachic debate surrounding organ donation agrees that all those laws must be overridden if it is a matter of pikuach nefesh, saving a life -- considered one of the greatest mitzvot in Judaism, surpassing most commands.
The real debate revolves, then, around the halachic definition of death. All organs from cadavers are harvested when the donor is brain dead, but machines are keeping the donor's heart beating and blood flowing, since organs begin to deteriorate as soon as they are deprived of oxygen.
The classic Talmudic definition of death is when a feather held below the nose doesn't move, and when an ear pressed to the chest does not hear a heartbeat. The question then becomes how those criteria work into today's medical technology.
In 1969, at the early stages of transplantation, the Conservative movement accepted cessation of brainstem activity as meeting the halachic criteria for death.
"The only reason why traditional criteria were the criteria was that was the state of medical science," says Dorff, who discusses the topic in his book, "Matters of Life and Death: A Jewish Approach to Modern Medical Ethics" (Jewish Publication Society 1998).
In 1997 the Conservative movement passed a resolution declaring it a positive obligation incumbent upon Jews to sign a donor card and make their wishes known to family members.
The Reform movement likewise encouraged organ donation starting in 1968, and has made available extensive educational and programming material (see sidebar page 16).
In the Orthodox movement, the questions surrounding organ donation remains one of the most heated contemporary halachic debates, involving the top thinkers in the Orthodox world.
In 1991, the Rabbinical Council of America, an Orthodox umbrella group, weighed in, issuing a healthcare proxy form saying that brainstem death met the halachic criteria for death, and therefore making one's organs available for donation was permitted and strongly encouraged. The RCA, under the scholarship of bioethicist Rabbi Moshe Tendler, relied on the positions of the late Rabbi Moshe Feinstein and the findings of the chief rabbinate in Israel, which in 1989 declared organ donation permissible.
But the Agudath Israel of America, another Orthodox umbrella group, denounced the document, saying there were still too much debate to issue such a definitive answer. An article in the Jewish Observer in response to the RCA proxy cited several noted halachic authorities -- including, they say, the late Rabbi Moshe Feinstein -- who have held fast to the idea that a beating heart renders a person living, and thus removing organs from a patient on a respirator constitutes murder.
Agudath issued its own proxy that designates the patient's personal rabbi to make the decisions, and it makes no declaration about organ donation.
There is more rabbinic consensus on live donation of kidneys, where halacha -- much as secular bioethics -- requires that the donor not be putting herself into mortal danger. Discussion still surrounds live donation of lobes of the lung or parts of the liver, which are newer to the medical field and have higher mortality rates than live kidney donations.
But most people who assume that organ donation is not within Jewish practice aren't referring to the halachic debate, but rather to the deep-seated, very personal qualms inherent in the issue.
That is where several new educational initiatives are taking aim, trying to dispel superstitions, to move people toward dealing with an issue that can save lives.
Alan Septimus, a securities analyst in New York whose life was changed by a kidney transplant five years ago, founded Operation Pikuach Nefesh in 1997 to make organ donation a topic discussed in Jewish institutions.
He says he hasn't run into anyone who is unwilling to host a speaker or run a program, but "it only becomes a priority if I find an institution that has been personally touched by the issue."
Irving Goldberg founded Transplant for Life, an educational group that operates out of Temple Kol Tikvah in Woodland Hills, after his son underwent a successful pancreas and kidney transplant four years ago. Its primary mission is to encourage Jewish participation in the Department of Health and Human Resource's National Donor Sabbath, a Friday, Saturday and Sunday set aside in November for organ and tissue donation awareness in churches, synagogues and other religious communities.
With Goldberg's help, participation went from 14 Los Angeles area shuls a few years ago to 85 in 1999. Goldberg, who gets calls from all over the country, supplies written materials for Jewish program-ming for Donor Sabbath -- or any other day -- and a five-step process to ensure that organiza-tions and individuals can get involved (see sidebar below).
The topic is also gaining some high-profile support in Los Angeles, with the help of some Wexner Heritage Foundation alumni, a class of 20 leaders in the Jewish community, including several entertainment industry machers, who spent two years together studying Jewish history and culture. As a class project, the group is developing a discussion guide for the hundreds of powerful members of the Wexner network nationwide.
"Our hope is if we keep talking about it people will be challenged in an intellectual and personal way," says Beth Comsky Raanan, a member of the class.
Discussion materials will also be available through Pikuach Nefesh, a new program Hadassah will launch at its international conference in Los Angeles in July.
"We will address the specific need for people to have a discussion with their families, so that everyone is on board," says Nancy Falchuk, co-chair of Hadassah's convention.
While the law does not require doctors to consult family members if a donor card is signed, most do, out of respect for survivors. But since so many people don't discuss the issue with loved ones, in almost half the cases the family refuses to let the procedure go through.
Temple Beth Am, which has been touched personally by a member who donated a kidney to his wife, will hold a half-day seminar on the topic Sunday, June 11, starting at 9 a.m. (for information call 310-652-7353, ext. 223).
Septimus says the initiative for changing these facts must come from within the religious community, because that is where people turn for end-of-life issues.
For Septimus, who for years before his transplant was tethered to a dialysis machine 12 hours a day, transplantation is very much a religious issue, where the physical and the spiritual merge.
"Many of the prayers we say daily take on tremendous new meaning," says Septimus. He quotes the part of the "Amidah" that praises God as a "supporter of the fallen, healer of the sick, liberator of the imprisoned."
"I never thought of myself as a shackled slave, yet I had to be hooked up to a machine and have a needle in my arm to draw out my blood and have it cleaned. Our lives are very fragile," Septimus says.
"Whether you believe God is Mechayeh HaMetim (Resurrecter of the Dead) or Mechayeh Hakol (Who Gives Life to All), whether you take it literally or figurative-ly," Septimus adds, "certainly there is a greater understanding of what those prayers mean after we've seen ourselves become so vulnerable, and because of this phenomenal late 20th century innovation, restored back to a semblance of health."
While organ donation remains a topic of sensitivity, all denominations agree that it is a mitzvah incumbent on healthy Jews to donate blood on a regular basis and to enter their names into a bone marrow registry. With American blood banks experiencing dangerous shortages, the mitzvah becomes even more urgent.
To make an appointment to donate blood, call the Red Cross at (800) GIVE-LIFE.
To enter a bone marrow registry, (800) MARROW-2, www.giftoflife.com.
A Godly Act
By Michael Gotlieb
Shortly after I graduated rabbinical school, I received a phone call. At the other end of the line was the voice of a woman wanting to donate an organ. Feverishly, my thoughts turned inward as I began rehashing the material taught to me in my biomedical ethics courses: when life stops, what Jewish law says, how to comfort the bereaved... "Rabbi," she went on, " would you send someone over from your congregation right away to pick it up?" That's when I realized she had been referring not to her kidneys or corneas, but to her somewhat neglected, 30-year-old Wurlitzer.
As happy as I was to receive a Wurlitzer -- and that the women was in fine health -- I do wish more congregants would call me to discuss donating the other kinds of organs. It is, to be blunt, nothing short of a godly act.
Inexcusably, most people do not donate their organs once they pass away. Some refuse to donate out of the fear their body will be disfigured when the organs are harvested. But according to the U.S. Department of Health & Human Services, the procedure takes place in an operating room, guided by the hand of a skilled surgeon. When completed, it leaves the deceased donor neither disfigured nor altered in appearance.
Others, who wish to donate their vital organs after they die, often fail to properly inform their family and physician of their final request, thereby invalidating a potentially life saving contribution. Meanwhile, 64,000 Americans are included on an organ recipient waiting list; a list which grows larger every year. One-third of those listed will die before they receive a heart or liver.
If everybody eligible would routinely and clearly stipulate that his or her vital organs may be donated upon death, the waiting list for those in critical need would diminish significantly. Unless medically ill-advised, everyone has a moral obligation to be an organ donor.
Giving of one's vital organs upon one's death is an unsurpassed expression of love, precisely because the donor will never know the recipient. Furthermore, organ donation has the power to transcend ethnic and racial boundaries. The recipient is not concerned about whether the compatible donor lived life as a Jew, Christian, Muslim, or secularist; whether he or she was rich or poor; black or white.
Ever since the courts ruled on Roe vs. Wade, our nation has debated the important moral question of when life begins. But in order to help save the lives of those who are in precious need of an organ transplant, it is also in our nation's moral interest to address the question, "When does life end?"
Most major religious groups approve and support the principles and practices of organ donation based on the definition of brain death. Such a definition is an accepted medical, ethical, and legal principle. It is the standard by which our own Jewish religion determines life's cessation; one that crosses most Jewish denominational boundaries.
According to a recent Gallup poll, fewer than 10 percent of Americans are aware of their own religion's doctrines regarding organ and tissue donation. If that survey is correct, places of worship throughout the land must better inform their congregants of their religious duty to donate their organs. Though religions may differ on many issues, most agree: Organ donation is one of the highest forms of preserving and caring for one's fellow human being.
While the Bible makes no specific mention of organ transplants, its timeless content alludes to it in principle. The story of creation portrays God taking a rib from Adam, and thereby creating Eve. No doubt, the story is allegorical and not intended for a literal interpretation. Nonetheless, it suggests that God both gives and enhances life, in essence, by transplanting one part of a human being into another. As God does, so ought we.
In the final analysis, the good that comes from organ donation is that which it teaches humanity the world over: All of us are made of one flesh, all of us are truly children of God.
Michael Gotleib is senior rabbi at Kehillat Maarav in Santa Monica