Story by Joel Swerdlow
Three key moments helped make Julian Byrd's donation possible. The complexity and emotions of these moments - and the countless ways in which they could have gone wrong - also help explain what is perhaps the greatest mystery about transplantation in America. Public opinion polls consistently show that more than 90 percent of the American people would like to donate their organs at the time of death, yet as many as half of the families say "no" to organ donation when a loved one dies.
One key reason why families decline to donate was clear in Susan's question to Scott: How could Julian be dead when he feels and looks alive?
Doctors at St. Mary conducted a wide range of tests over several days before they declared Julian brain dead. But, common sense demands, if people are brain-dead, are they then dead, dead, and if so, why not just call them dead?
Told during the course of five days that her son's "minimal brain activity" had become "no brain activity" and that there was no way this could change, Susan quite logically asked, "If he's dead, why do all of the numbers on his machines keep changing?"
Howard Nathan, president and CEO of Gift of Life, says that families are likely to refuse to donate if they do not understand brain death and that the discussion of donation should not take place until it's clear that the family understands that their loved one is, in fact, dead.
"All people who die, including people whose hearts have stopped, are dead because eventually their brains die. All death is really the irrevocable destruction of all parts of the brain," says Nathan, adding that the concept of brain death is difficult for many to understand.
The determination of brain death is done by a physician - typically a neurologist or neurosurgeon - who, by law, cannot be involved in organ transplantation. Included among the tests for brain death are a search for a gag response and a response to light or pain; x-rays or scans of the brain to confirm the absence of blood flow; an EEG to identify loss of all electrical activity in the brain; and other tests that may be required by the hospital. Doctors will often allow families to observe some of the tests, which may be conducted on two separate occasions over a period of several hours.
Given time, support and answers to her questions, Susan was able to come to terms with brain death, enabling her to take the next step to consider organ and tissue donation.
This call, which brought in transplant coordinator Scott Demczyszyn to talk to Julian's family, occurred because experience over the past two decades has shown that families are most likely to donate when the request comes from someone trained in transplant-related issues and is not involved in providing care for the person who has just died. Thus, federal regulations require that hospitals notify their area's organ procurement organization whenever someone dies.
But the calls about Julian involved far more than obeying laws or regulations: the Gift of Life Donor Program and area hospitals have a relationship that involves training sessions and continuous communications. In fact, less than a week after Julian's death, Scott and other staff members from Gift of Life are back at the St. Mary's ICU meeting with everyone who had worked so hard trying to save Julian.
The ICU staff members all look tired and a bit worn as Jennifer Wax, hospital services coordinator at Gift of Life, begins to speak. "We know that helping with donation meant a lot of extra work for you," Jennifer says. "There were lots of extra tests of arterial gases and lung function. We also recognize how emotionally difficult it is to lose a patient, especially one who was so young."
Jennifer then passes out a description of what happened to Julian's organs: heart to a 12- year-old girl, right lung to a father of three children, left lung to a local minister, liver to a 31-year-old mother who was near death, pancreas and right kidney to a father of three and left kidney to a father of four.
One nurse, who has seemed too tired to pay close attention, looks at the paper and exclaims, "That's awesome."
Perhaps the most vital relationship that made donation possible was between Susan and the transplant coordinators. Strangers who met during one of life's most stressful circumstances, they quickly formed a bond of mutual openness and trust.
And yet, Julian himself helped create this relationship by his decision to register as a donor when he got his driver's license three years earlier.
Clear memories of a conversation about organ donation with Julian enabled Susan to know with absolute certainty that organ donation was the best and only option. Thus, Julian had given her a gift - an opportunity to focus on something positive in the midst of immeasurable grief.
Not everyone who decides to be a donor has such a conversation with their family members, and the results could be seen at Gift of Life's office on a board that tracks referrals of potential donors. Several notations read "family thinking about it" and "family declined."
People age 18 or older can legally donate their organs and tissues by signing a donor card or by registering as a donor through the driver license program. To maximize the chances of actually becoming a donor, everyone must do what Julian did - talk to family members about your wishes. Conversations with family members are crucial because the medical community, giving priority to emotions that bind families together, is unlikely to pursue donation if a family objects.
A few days later at Julian's funeral, many of his friends and classmates nod in agreement as a local priest says, "Julian continues to give, even in death."
Standing outside afterwards, these young people talk about how they, like Julian, signed up as donors. Most, however, have no memory of ever discussing this with their families.
Listening to them, some of the students insist that they would never agree to be donors. "They'd want your organs and they wouldn't do everything possible to save you," one says. Others insist they know this to be true.
Lots of work, obviously, still needs to be done.