The first thing Kim Ricci did was put her hand on Brian’s chest. She felt it immediately, the diligent thump. Lub-dup, lub-dup, lub-dup. It was the heart of her daughter, Heather Ann Ricci, a smart, mischievous 10-year-old from Bel Air, now living inside a sturdy teenager from North Carolina named Brian Avery.
“It was so strange, so surreal,” says Kim. “I felt like I had to touch him.”
The first annual Heather Ann Ricci Memorial Golf Outing, held at White Hall’s Greystone Golf Course in 2004, took place on one of those summer days that make meteorologists look incompetent: The sun came, then left, then it rained, then it didn’t. That was the day Louis and Kim Ricci were meeting Brian Avery for the first time. In 2001, their daughter died in a car accident on her 10th birthday, and Brian was one of five individuals who received Heather’s organs. One of the other recipients was also at the charity tournament that day.
After Kim found her daughter’s heart, there were hugs and tears. Then Brian and his father joined Louis for a round of golf.
“Brian was just 11 when he received Heather’s heart,” says Louis Ricci, whose athleticism was handed down to Heather, an avid swimmer. “To be honest, when we made the decision to donate Heather’s organs, I can’t say I knew it was a positive thing to do. But now I look at this young man and think, ‘Heather saved his life.’”
In each case, however, Brian and the other recipients have not just Heather to thank, but The Living Legacy Foundation, a Maryland-based nonprofit that has organized more than 7,000 highly complex organ transplants since its inception in 1983. And on that day, the 60-odd golfers and their families at the inaugural golf event raised $11,000 for the Foundation.
There are currently 98,422 men, women, and children nationwide in need of a life-saving organ transplant, including 1,998 Marylanders. Every 12 minutes, another name is added to the waiting list. But supply has yet to meet demand: An average of 18 people die every day from the lack of an available organ.
Helping change those statistics is The Living Legacy Foundation. The 99-employee nonprofit is dedicated to organ and tissue procurement, family support, and public and private education in 21 counties in Maryland, an area that includes 35 hospitals, two transplant centers, and 3.1 million people.
“Our job is so important because, as Americans, we have access to great health care,” says Charlie Alexander, president and CEO of the foundation. “People with end organ failure have services within their reach. But a lot of dying people don’t even look for help. We need to change that culture of thinking.”
The one-story foundation headquarters is located in an inconspicuous industrial parcel on Twin Springs Road in Lansdowne, neighbor to a trucking company, a Mr. Mattress store, and a smattering of middle-class homes.
Inside, the building has the feel of a hospital (long hallways, antiseptic waiting areas). There are bullpens for each department: family advocacy, clinical staff, and donor services. There are multiple suites dedicated to organ and tissue recovery, which is where the critical work is done. A single donor can affect 100 recipients: Not only are there eight major organs (heart, kidneys, liver, lungs, pancreas, and intestine), but also bone, cartilage, tendons, heart valves, cornea, middle ear, veins, and skin. In 2007, the foundation coordinated more than 645 transplants, a record number for local patients.
There was a time when organ transplantation wasn’t so complex. In fact, it was downright quaint. The first successful transplant didn’t require a nationwide search for a match; it required a look into the top bunk. In 1954, Richard Herrick successfully received a kidney from his identical twin brother Ronald at the Peter Bent Brigham Hospital in Boston.
Dr. Melville Williams, former chief of transplant surgery at Johns Hopkins and Living Legacy Foundation board member, was particularly impressed with this new medical field.
“I was at Harvard Medical School just as the first transplants were being done, and I saw a great opportunity in that field,” Williams says. “I wanted to be on the cutting edge of medicine. From the science to the social issues, it was new in every way.”
Williams remembers the awe he felt seeing those possibilities firsthand.
“Early on, I was present for one experiment where the doctor took out a heart and attached it to a pump,” Dr. Williams says in an academic tone. “Well, I was shocked out of my socks when I came in the next morning and found that heart sitting on a bench going wacka wacka wacka, beating by itself.”
But a bigger dilemma was creating a standardized approach to matching donors and recipients, and that wasn’t adopted until 1981. Called 24 Alert, it was, according to Alexander, “an automated voicemail machine where you would enter a social security number and blood type. The machine would run an algorithm, and print out any matches.”
More than two decades later, OPTN (Organ Procurement and Transplantation Network) is the de facto database. It is a complex matrix that cross-references blood type, immune status, degree of medical urgency, length of time on the waiting list, and distance between donor and recipient.
This kind of streamlined connectivity has made the seemingly impossible possible. Consider the headline that scrolled across the newswires on April 5: “Surgeons perform first six-way kidney transplant.” That was when Johns Hopkins surgeons transplanted a half-dozen kidneys simultaneously. It took six operating rooms, nine medical teams, and 10 hours of surgery.
But even though many people have already—and often unknowingly—been transplant recipients (knee and hip reconstruction, skin grafts, blood transfusions, stem cell research, even dental reconstruction), the public generally has no idea of the vast operation behind transplantation: the surgeons, the family advocates, the helicopter pilots, the recipients, the donor families, the little girl from Bel Air.
Even though Heather Ann Ricci was turning 10 that day, it was still an August day like any other. So before the balloons and birthday cake, there was a regular kid’s life to be lived. Heather, a cheerful girl with a mouthful of braces and hair the color of ripe wheat, was to enter fifth grade the following month at St. Margaret Elementary School. Heather and her younger sister, Nicole, were attending half-day classes to get acclimated. When classes were over, their 16-year-old babysitter picked them up.
After lunch at home, the babysitter drove Heather and Nicole to the dentist. A half-mile from their front door, a tractor-trailer ran a red light and broadsided the car. Heather was on the side of impact, and suffered a massive head injury. She was first rushed to Harford County’s Upper Chesapeake Medical Center, then flown to Johns Hopkins Pediatric Trauma. Heather held on for 30 hours, with her father at her side.
“At 3 a.m., I was with Nicole,” says Louis. “I said to her, ‘Do you remember anything about the accident?’ She leaned over and said, ‘Daddy, when the truck hit Heather, she went to sleep.’ That’s what the doctor was trying to explain to us, but it took the 6-year-old’s point of view to really understand it.”
It’s at this point that a representative from The Living Legacy Foundation steps in and asks about the possibility of organ donation. Marcus Walker is a family advocate with The Living Legacy Foundation. The 35-year-old’s experience with braving tough situations began early: He lost part of his leg to bone cancer as a teenager.
“Donation can’t justify losing a loved one,” says Walker, who is also a staff director at Camp Sunrise, a summer camp for children who had or still have cancer. “But it does give meaning to an otherwise senseless tragedy.”
For the Ricci family, the decision was swift. Kim works in the medical field as a sonographer and understood the importance of donating. “She said yes without hesitation,” says Louis. “I was numb at that time, so I went along with her decision.”
Once the decision is made, time becomes critical. For end-of-life patients like Heather, the donor body can be very unstable, making organ removal a difficult task. Once removed, the organ is flushed with a perfusion solution infused with electrolytes and nutrients, and then packed in a cooler or cardboard box. Meanwhile, a donor services representative like Doni Bell, herself a recipient (she received a kidney and pancreas eight years ago), searches OPTN for a match while managing the donor’s critical information on LifeLogics, database software created specifically for the transplant community. “It’s a real balancing act,” says Bell. “You have to keep up with lab numbers, diagnostics, bloodwork, and attending surgeons. And that’s just one donor. Sometimes you can be juggling seven at one time.”
Once a match is found, the organ is transported to the recipient, which can get tricky. The patient isn’t always one I-83 exit away, and organs can expire quickly. A heart must be transplanted within four hours. The liver can be preserved for eight to 10 hours. The most durable are the kidneys, which can last up to 48 hours. Brian Avery, Heather’s heart recipient, was bedridden in North Carolina. His new heart was at Broadway and Fayette. The answer: helicopter transport.
Guy Barber is the principal of Baltimore Helicopter Services, a full-service helicopter transport that’s become a favorite for local VIPs. But Barber, a former flight paramedic, saw an opportunity to help the organ-donor community. He’d spent a lot of time coordinating donor flyouts with MedEvac helicopters, and found that they weren’t made for the job. “So I met with our investors,” recalls Barber. “I said, ‘I have an idea. Hear me out.’”
Now Baltimore Helicopter Services’ cherry red Bell 407 not only transports local CEOs, celebrities, and professional athletes, but surgeons, medical teams, and organs. When a request comes in, the chopper takes off from its heliport on South Clinton Street and meets surgical teams on hospital roofs across the Mid-Atlantic. The Bell 407 can carry five people comfortably (unlike MedEvacs, which are crammed with stretchers and other trauma equipment), and has a designated space for organ coolers.
Even though the Living Legacy Foundation is a $22 million operation—most of that from private and public donations and recovery fees paid by the hospitals and transplant centers—and even though it coordinated a record number of transplants last year, there are major hurdles ahead. But the challenges aren’t medical, they’re social. One of them is mistrust of organ donation in the black community, who recall the Tuskegee Experiments, in which government researchers until 1972 essentially used unsuspecting sharecroppers as lab rats for a syphillis study, with no intention of curing them. The irony is not lost on Dr. Williams that Johns Hopkins, one of the nation’s leading transplant hubs, is surrounded by one of the nation’s most prominent black communities.
“However, the number of black transplant recipients is astonishing,” notes Dr. Williams.
In an effort to reach the people directly, the LLF partnered with the Afro-American Newspaper last year to help produce Myths and Miracles, a brochure aimed at debunking misinformation and encouraging the community to donate. Its table of contents highlights such stories as “Getting the conversation going” and “Some die while waiting.”
Williams adds that The Living Legacy Foundation’s board of trustees includes Mayor Sheila Dixon, WBAL anchor Stan Stovall, and Morgan State University president Gloria Marrow.
In late April, seven years after Heather’s death, and five years after the first golf charity in her name, Aberdeen’s Beechtree Golf Club hosted this year’s Heather Ann Ricci Memorial Golf Outing. In addition to Brian Avery, who is headed to East Carolina University this fall, recipient Charlene James, who has Heather’s right kidney, was there. Adelheid Roakes, a 69-year-old woman who received her lungs, was there, too. Families met and talked, cried, and hugged.
The past four events have raised $86,000 for The Living Legacy Foundation. This year, a check was written for $30,000.
“I believe this was Heather’s plan,” says her mother, Kim. “To help people and promote giving. That was her mission.”
When the field of 136 players took golf carts to their respective tee boxes, James and Roakes drove to the nearby cemetery where Heather is buried.
After paying their respects they left the gravesite, taking a piece of the smart, mischievous 10-year-old with them.
