Deanna Santana had signed up to put the little pink dot on her driver’s license when she was 16 years old, but she didn’t really give it much thought until 27 years later, when her son Scott Santana sustained life-threatening injuries in a car accident.
That’s when she and her husband, Rich Santana, heard from an organ-procurement organization asking whether they knew that their son was a registered organ donor.
“The hospital followed the national protocols and notified the organ recovery agency that a brain-dead declaration was impending for him,” Santana said. “I had no recollection at that time that Scott and I had talked about donation. I can remember now that we talked about it, but when a family is in crisis, they don’t always remember those kind of things.”
The Santanas could have overruled their minor son’s decision, but they chose instead to honor it. Scott’s gift in 2011 inspired Santana to learn more about organ donation and to help others do the same at first as a volunteer with Sacramento-based Sierra Donor Services and now on its staff as senior public education coordinator.
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Santana, a Placerville resident, also recently won a seat on the board of the national organization that oversees organ procurement and transplant, the United Network for Organ Sharing. It operates the Organ Procurement and Transplant Network. Based in Richmond, Va., the nonprofit UNOS board sets policy on organ transplant, administers the donor registry and patient wait list, and polices transplant centers and organ procurement organizations. Its board is composed of 42 doctors, nurses, hospital administrators, survivors, donor relatives and others.
Betsy Walsh, the incoming board president for the organ-sharing network, is a living donor. She donated one of her kidneys to her sister, Judy Jones Tisdale. Walsh, an attorney, is the first non-clinician to lead the board.
“At my first board meeting,” Walsh said, “I was terrified when I had a position contrary to one that a physician had just expressed, but I told myself, ‘You’re here for a reason.’ So I went ahead and spoke, and guess what? We had a dialogue … There is debate on tough questions, but it is all very respectful and with the right end in mind: more access to transplantation and taking good care of people.”
Santana said she wants to make sure that the voices of donor families are heard. She also wants to increase outreach to people from diverse communities and cultures.
“We need to make sure we’re providing information … in ways that are programmed for different communities to receive them and in the languages they speak,” she said. “The story really has to be told by people from that community who have been touched by donation.”
At Sierra Donor Services, Santana works with roughly 300 volunteers to raise awareness of the organization, to ensure that local families’ first contact with the agency isn’t when they are in crisis.
Recently, students at Franklin High School organized a drive at their school and registered roughly 186 donors, Santana said. Typically, the organization registers only 20 to 25 people at events. In California, only about 5 percent of organ donors register in such drives. Roughly 95 percent sign up when they obtain a driver’s license. Their licenses have the little pink dot.
Santana said that her family tells people, “‘On the worst day of our lives, five families got the best news of their lives.’ And, I would like it, if every day, five families didn’t get the news that their son or their daughter or their husband is not going to survive because an organ was not available.”
She and Walsh both emphasize that 21 people die each day because of the dearth of organ donors.
“Something good can come out of a tragedy,” Santana said. “I want to make sure that I pave the way so that, whenever possible, more families can have the opportunity to understand about donation and then to make that decision for their loved ones.”
Call The Bee’s Cathie Anderson, (916) 321-1193. Follow her on Twitter @CathieA_SacBee.