Gift Of Life: Part Two
GRMC Director of Pastoral Care Jeremy Roy remembers the situation well.
The woman was brain dead and was on a ventilator, but otherwise, her heart and other organs were fine. She was one of 2.3 million Americans who died that year, but in death she was very unique because her family consented to allow her to donate her organs for transplant. The state of Texas requires hospitals to contract with non-profit organ procurement agencies, and GRMC has agreements with the South Texas Blood and Tissue Center, Lions Eye Bank and the Texas Organ Sharing Alliance (TOSA) for tissues including blood, skin and bone, eyes and other vital organs. Whenever someone dies who might be a candidate to donate, the hospital is required by state law to contact the appropriate procurement agency. Hospital officials spoke to the young woman’s family and informed them at one of the darkest times in their lives that there was something good that could come of her death.
The knowledge was transformative.
“We were in the midst of this very hopeless situation, and we were able to come to the family and say she was a candidate for donation,” Roy said. “It infused a little hope that she wouldn’t die in vain — without purpose. It changed the whole event from a dark, dark thing to one where someone was being helped — one where someone’s life was being saved.” The girl’s father waited outside the hospital, and stopped the surgeon who came to Seguin to get his daughter’s heart for transplant into an Oklahoma boy. “Dad sat by the back door, and they walked out carrying an ice chest that contained his daughter’s heart,” Roy recalled. “He told the surgeon, ‘Tell them that we loved her. Tell them what a wonderful girl she was.’ You talk about ripping your heart out.”
In his years at GRMC, Roy remembers two cases where such donations have occurred here.
“It’s not that common to donate organs because an organ donor has to be on a ventilator and has to have a diagnosis of brain death,” Roy said. Only 2 percent of all people die in a condition where their organs are suitable for transplant. And even then, the number of people who end up actually donating their organs is only a small fraction of 1 percent. “The percentage of people who would ever meet the criteria is miniscule,” Roy said. “That’s why it’s important for people to register so when it is a possibility, there’s no question. It’s a great thing. I’m definitely a proponent, and I’m a registered donor. It’s easy to do.” TOSA sends health care professionals called Organ Recovery Coordinators to the hospital to review the records, the lab work and other available information to determine if indeed a person is a candidate to donate. If so, they contact the family. “The procurement agency is very sensitive to the family’s emotional well-being. They don’t want to upset them,” Roy said. “They’re consummate professionals. I take the representative from the agency to the family, introduce them and what they do and say, ‘They want to talk to you.’” Esmeralda “Mela” Perez is manager of Communication and Community Development for TOSA, one of 58 federally designated procurement agencies around the country and the one that serves 117 hospitals in 56 counties of south and central Texas.
Perez’s career has taken her full circle. Prior to joining TOSA, she worked for the Christus Transplant Center helping people in end stage disease, which means people who need a transplant and will die without it. Now, she educates people about the importance of donating organs and of registering as an organ donor. “It’s a very unique gift, not one everyone can give, but one so valuable it needs to be honored,” Perez said. “It’s a second chance.”
TOSA works with hospitals and provides education about becoming a donor.
“We encourage everyone to talk about donation, learn about donation and register on the Glenda Dawson Donate Life-Texas Registry, www.donatelifetexas.org. It was created by the state of Texas and is run by the state, and it’s simple to do. It only takes a minute,” Perez said. Anyone who doesn’t have Internet access can call Perez at 210-614-7030, and she’ll send the forms, she said. Many Texans believe they’re registered donors when in fact they’re not, Perez said. There are less than 700,000 registered donors in this state, which has an estimated 24 million residents. “If you do not have a heart shape on the front of your driver’s license, you’re not a donor,” Perez said. “Carrying a donor card does not mean you’re a registered donor — it just means that you intend to do so.”
To remove any doubt, register on donatelifetexas.org, she said.
TOSA works to educate people about registering as donors — and about the importance of registering in advance to make your intentions known. “It takes the burden off the family at a time when it’s difficult to even see past what’s going on to helping someone else,” Perez said. “They’re dealing with loss and shock and all these emotions of, ‘Oh, my God, I’m losing a loved one.’ It’s a difficult time.”
At the time of brain death, TOSA works with the hospital and then with the family.
“It’s a grieving process, and it begins with letting go of the body,” Perez said. “Once they have realized that their loved one is really not here anymore, they’ll determine when the machine is turned off. Hopefully, they make the decision to save someone else’s life.” Eight organs can be considered for donation, including the kidneys, eyes, heart, lungs and liver. In the majority of people, three or four organs are donated, at best. “Sometimes, not all organs are medically suitable,” Perez said. “The last thing we want to be responsible for is donating organs that are not suitable.”
Once TOSA reviews the chart and talks to the medical team, the coordinator meets the family to see if they’ll decide to make the donation. “We assess the information and answer all questions,” Perez said. “We’re there the whole time, and we never leave.” For some families, the decision is a quick one. Others want to talk about it and learn about donating. Sometimes, they come down somewhere in the middle. “Some start the conversation, then say, ‘Give us time,’ and then they’ll ask to meet with us again, we’ll answer one or two questions and back off,” Perez said. If the family says yes, the transplant team and TOSA’s clinical coordinators work together. The entire process costs a donor family nothing.
“We’re responsible for the costs of recovering the organs, and we’re responsible for paying the staff. If a donated organ goes to another state, we incur the expense,” Perez said. The body of the deceased is not unduly defaced by the surgical procedures involved. “We prepare the body for the mortuary to prepare it for viewing, and it can be viewed in an open casket,” she said.
In most cases, few people actually end up donating organs.
In 2009, in TOSA’s service area, there were 3,500 calls from hospitals reporting potential donors. Only 88 of those calls resulted in actual donations. “The donation rate is way, way lower than 1 percent,” she said. “Sometimes, people say no, and sometimes, they’re not medically suitable. In Texas, we have 10,000 people awaiting transplant, most of those for kidneys, and in our service area, there are 4,500.”
Nationally, the numbers are even more daunting.
“An estimated 106,000 people are waiting across the country. We say ‘estimated’ because they’re adding names every day, and people are dying every day while waiting, as well,” Perez said.
TOSA, the South Texas Blood and Tissue Center and other agencies don’t just drop the donor families once they’ve secured organs from a loved one. Donor families receive a sympathy card, and then TOSA follows up with a call or a letter to provide them with information about the recipient, including their age, their gender and other information. Later, if the families on both sides decide they’re ready, TOSA will help bring them together. “It’s not easy at first. There’s a lot of happiness and a lot of tears, and so many emotions come back,” Perez said. “I’ve had the honor of facilitating that over the phone. The beautiful part of it is we have several families a year who meet.”
Roy didn’t say whether the family of the young woman named on the plaque in the GRMC intensive care unit ever contacted the recipient’s family up in Oklahoma.
The boy who got the heart lived another few years. “You say, ‘Gosh, he only lived four or five years,’” Roy acknowledged. But think about it, Roy said. “He was able to finish high school and go off to college; he was able to have a girlfriend,” Roy said. “It was four or five years he would not have had with his family. If you think about that, it was worth it.”